Not-So-Healing Touches

Two weeks ago, I talked about how sounds can be translated into pain when one has FTD. Today, I would like to talk about the sense of touch, which can have the same effect.

I hear all the time about the "comfort of touch." It is not uncommon for me to hear or read of someone praising the "healing touch." Another one I see often is that if you are dealing with an agitated person, "try a gentle touch" to help calm them.

I am the opposite. I often pull back when someone touches me, even from a gentle touch to calm me, This touch does not calm me, it does the opposite. It magnifies the aggravation or stress rather than easing it.

Just as explained that sounds can sometimes be translated into pain, touching can do the same thing. I did a little research while preparing to write about this. Turns out, there is even a scientific terminology for this, tactile dysesthea" which is defined as an unpleasant and distorted sense of touch". It actually made me feel better to know that there is a name for it which reassures me that I am not the only one who experiences it.

The absolute worst time to try to touch me is when I am stressed or agitated. A normal reaction for someone observing the signs of this stress is to reach out and touch. Often this is just an easy pat to the shoulder or arm or, the most horrible, an attempt to give a hug. My reaction can lead to truly hurting the feelings of a loved one. Here they are, trying to help me settle down or to reassure me that everything is okay, and I react like they have slapped me.

While, the support is appreciated, the touch brings a total sense of pain to my body. Like with sound, it is not a specific place or area that is painful, it seems to be more like nerve pain. Every bit of my body is feeling it. The best thing, in an instance like this is to, rather than touching me, is to calmly ask me if I am okay, if there is anything they can do to help or if I would rather be left alone. If you want to offer a hug, ask first.

This can happen anywhere, anytime. It can cause me to appear as though I am totally socially inept. If a casual acquaintance or someone I just met attempts to give me a hug or even just a touch, I can freeze up or jerk away. It is difficult to explain to someone that I am not rejecting them and that it is just a fear of being touched. As soon as I react like that, they are already shying away from me before I can say a word. So, on top of the sensation of pain, I have the embarrassment of someone walking away from me.

It is difficult for a loved one to understand that, when they try to give me a reassuring hug or pat on the shoulder, that I am not rejecting them. It is the touch that I am rejecting. It is pretty close to impossible for most people to understand that it is pain that I am feeling, not comfort.

I had an experience with this a couple days ago. I needed to buy a new printer and was determined to install it myself. Before FTD, it would have been ten minutes to get the darned thing out of the box and less than that to get it working. This time, it was a disaster. Of course, the more time it took, the more frustrated I got. The more frustrated I got, I took it out on the printer, the computer and my poor husband who attempted to help. It literally took me five hours until I had it up and running. When I finally got it, my thought was "Of course, I knew that's what I needed to do!"

I did have a wonderful feeling of accomplishment, that I did it myself. It's just that when I was done, I had to clean up all the papers and wires I had thrown around the room. I also had to apologize to my husband and explain, again, why I screamed at him and rejected his reassuring touches as well as his offers to help.

I wish I could say this is a rare incident, but it is not. I am an equal opportunity offender. It happens with anyone, anytime, any place. It is just one more way that this disease leaves me with a feeling of embarrassment and worthlessness.

This pain from being touched is not the only touch-related issue with FTD. Another totally different issue that affects many is a need to constantly touch things. It can be something like repeatedly tapping, rubbing or stroking something. It is an obsessive compulsion, another symptom of FTD. While this most likely does no harm, it can be extremely frustrating to the people around them. It can also be frustrating to the one with FTD because they often realize they are doing it but cannot stop.

An even worse touch-related symptom is the intense desire to touch others in a sexual manner. This stems from the symptom of hyper-sexuality that is, unfortunately, pretty common to those with FTD. This symptom can be extremely embarrassing on both sides of the touching. It can also destroy marriages and relationships.

Fortunately, not everyone, with FTD or not, reacts the way I do to touch. To many, that reassuring touch or healing touch is a very effective tool. Touch can do wonders. It can also hurt. The important thing to the one with FTD is to know they aren't the only one. Likewise, the important thing to know for the loved ones is that it isn't deliberate.

FTD - The Horror Story

It is nearly impossible for those without FTD to fully understand that our questionable actions are almost always caused, or at least triggered, by our FTD. With no impulse control and no empathy or sympathy or even just thinking about others first, we have done things that we would have never done before the disease took over.  I keep saying "we" because I know that it is definitely true for me and have talked to or read about enough others who have said the same thing.

Sometimes, after the fact, I will realize what I have done and be appalled at my actions. When that happens, I am able to apologize, but most of these things are so repulsive that no apology is going to make much difference. Unfortunately, this part of FTD is difficult to explain and for the people around us to fully understand.

I can remember a few movies that involved someone's body being taken over by something or someone extremely evil. Most of the movies have been horror stories. These movies give me the best way that I can explain FTD and the ways I behave. When I am aware of the things I have done or said, I understand that I would have never, ever, done these actions before I had FTD.

It truly is like someone else has taken over my body. I never spoke so vulgarly or meanly before. I never disregarded other peoples' feelings, I rarely put myself first. I always thought about how my words or actions would affect others. This even included strangers, not just my friends and family.  I know I have used this example before, but one day in the crowded grocery store, I yelled out "What the f**k are all these people doing here?" After we got home and when the stress of shopping was over, I realized what I had done. To this day, when I interact with the employees of that store, I wonder if they heard me. I wonder how little they must think of me. I absolutely had no control over what I yelled, but there is no way to explain it to anyone who doesn't understand FTD.

It isn't just speaking the horrible things, it is also actions. I compulsively purchase things that I do not need. I am obsessed with Thirty-One bags.  I have a a 30" x 24" x 12" box overflowing with them. All the bags are still in the folded state they are shipped in and still in their original packaging. If our entire neighborhood decided to go on a picnic, I  have enough thermal bags to pack everyone's food and enough tote bags to pack everything else.  These bags are high quality and very attractive, but, come on, how many do I think I need? "Think" is the operative word in that statement. I don't think, I just buy. Some good comes from it because I end up donating them to charities and the VFW for raffle prizes and such things.

Now, I will finally get to my point. Today, I read someone's post on Facebook about how dastardly her spouse with FTD has become. All the things she describes are totally FTD. She seems to truly believe that all this is deliberate and he should be able to control himself. In fact, she stated that she avoids the support groups because the other members kept telling her that he "doesn't know what he is doing" or that "It isn't him."

I somewhat agree with her assessment of those two phrases. The one I really don't like is, "It isn't him, it's the FTD." While in essence this is true, I am still responsible for what I do, even though caused by a disease. Of course it is me doing unforgivable things and since part of my brain enables me to do what I am doing, I know it is me doing them. The other side of the coin is that I do not understand that it is wrong to say or do those things. Fortunately, I do not threaten the safety of those around me. I merely make their lives a living hell. I should know, I dragged them there right along side of me. I didn't have to go to any effort and certainly had no thought about the inherent risks or offense. The FTD demon that has taken over my brain, and killed some of the most important parts in the process, pushed me all the way there. The dead and missing parts of my brain are no longer there to filter good from evil.

I try to reduce the risks. I made the conscious decision, on my own, to stop driving. I knew I was endangering others even though I had not had an accident or hurt anyone... yet. I know I should no longer handle power tools and so far have been able to resist doing at least that. I still endanger myself. I forget to take a cane when walking through the yard and fall more often than I would if I remembered. I still burn my hands by forgetting I need to use potholders. I still stick my finger into boiling water or cooking food to see if it's hot yet.

If my brain is not capable of preventing myself from doing such stupid things, how can we blame it  and its dead brain cells, for doing all the emotionally hurtful things? It is a difficult concept for those who have not experienced FTD to grasp. Those who do understand care enough to "get it" are my heroes.

Since it is Halloween week, I will go back to the horror movie, Living With FTD, is the body responsible for this person's actions, or is it the brain that has possessed the body to blame? Is it the part of the brain that is still intact, or is it the part of the brain that is nothing but dead brain cells? FTD truly is a horror story.

How Can Noise Become Pain?

FTD destroys one's feelings of empathy and sympathy. It also destroys one's impulse control. What does this mean? It means I am a difficult person to deal with and can be downright ugly sometimes. In truth, I don't even like myself much anymore. I know I would not choose to live with  someone like me, if given a choice.

If I am carrying on a conversation with someone and disagree with what they are saying. I will interrupt and tell them they are wrong, stupid or a downright idiot. In today's age of a huge divide in our country over political issues, this can cause a scene and hurt feelings very quickly. It doesn't even have to be something as serious as politics, it can be anything at all, the weather, the time of day anything even if it is trivial and stupid.

For example, people are often telling me how much they like Fall. When someone is saying that, even before they are done, I may be yelling at them about how horrible Fall is and how can they possibly like it. I really do feel that way. I detest Winter and when Fall begins, I know Winter is not far behind. Oh, and I used to love Fall. The problem lies with my lack of impulse control. If I think it, I say it. I don't have the ability to control my words, to speak softly or even to just walk away. People who have known me for a long time often tell me that I have always done that, but it isn't the same thing. 

It used to be that I was very free about expressing my opinions and quick to begin debating issues. I certainly admit to that, but this is different. FTD is interrupting you and screaming at you that what you are saying is stupid and then lashing out again when you act angry or hurt. I truly try to fight this. If I hear someone talking about politics, I try to remember to walk away or ask them to change the subject. I can not explain how difficult this is to do. 

Conversations are one aspect of this, but there is so much more.  Sounds can cause the same kind of reaction. I am not talking about a large amount of noise like we encountered in a restaurant last week where we had to ask for our meals to be packed up to go before I started screaming at everyone to shut up. It can be any noise, especially if there is more than one noise going on at the same time. One of the worst things for me is that my husband has a habit of ripping junk mail into a few pieces before tossing it in the trash. He also rips packaging apart so that it takes up less room in the bag. The noise of this totally overwhelms all of my senses. My brain causes me to literally feel these noises as pain. I must stop whatever I am doing as I am unable to focus on anything. My entire being is trying to cope with the pain that should not be.

It's difficult to explain this. It is as if every nerve that is capable of feeling pain is triggered all at once. I know it is just noise, but my brain interprets it differently since I have FTD. This is accentuated if I have music playing or there is any other source of noise at the same time. The sense of pain is even more acute. When I am causing the noises, my brain seems to understand more clearly that it is just noise from what I am doing.

When my husband is making these noises, I start screaming for him to stop, over and over. The unfortunate thing is that he cannot remember that it bothers me, after all, how can noise trigger pain? I have no clue, I just know it does. I have written many times about how it is necessary to limit myself to "one thing at a time" if I want to survive the day. It is closely related to this noise issue. 

Whether it be screaming at someone because I disagree with them or at simple noises, I should be able to get over it. Something that took less than a minute to occur should be easy to set aside. This doesn't happen with FTD. The stress of a simple event like this stays and builds in my body and brain. It becomes a chain effect as every frustration through the entire day just builds and builds. At least once during that day, I will explode and run off to my room and hide from everyone and everything. I become unable to do anything constructive, comply with any request or even to think clearly.

So often, caregivers will complain about the person with FTD not cooperating, being disagreeable and nasty. The first thing I usually suggest is to get rid of any noise that you can. Turn off the radio or television and anything else that is making noise. If this isn't possible, take them to the spot where they are comfortable. For me, that is the room that is my bedroom, office and place to chill. 

Most people don't stop to think about all the noise pollution around us. We are so used to appliances, that we no longer hear the refrigerator running, the heat or air conditioning, the washer or dryer, or noises filtering in through open windows. To some of us with FTD, these noises can be totally overwhelming and put our entire mind and every nerve on edge. This is enough to make us downright miserable and nearly impossible to try to deal with.

It's not just noise, it can be the temperature or if the air vent is too close and blowing on them. The first thing I do when I get into the car is to close the air vents in front of me. The air blowing on me overwhelms all of my senses. It all boils down to this disease of FTD.

I hate this disease. It is cruel and heartless. It steals so many actions of one's brain, yet doesn't steal the memory. We remain fully aware of what is happening to us, unlike other forms of dementia. An example that pops into my mind is the swallowing issues that are common in FTD. This is usually an issue during late stages of Alzheimer's Disease, but by then it appears that they are not fully aware that it is happening. With FTD, we know it is happening, we know the pain involved, we know how difficult it is to maintain a healthy diet while not being able to swallow correctly or at all. We also know how frightening it is.

I realize this blog entry, and the last few, have been fairly negative. I noticed that it has actually affected the number of those reading the entries. It is so hard to be positive more and more of the time as the disease worsens. I try to hide the crappy stuff from everyone and try my darnedest to find the positive. Some days are harder than others. But, isn't life that the way for all of us. 

Educating the Caregivers

For someone with FTD, everything we attempt to do quickly becomes a challenge. Everything takes much more effort than it did pre-FTD and can leave us totally exhausted. Throw in a few curve balls, and the task quickly becomes not achievable and may leave those of us with FTD in worse shape than we were going into the activity. Yesterday was a great example of that for me.

Two or three months ago, I was granted permission to set up a display table on FTD at a local conference being held by the Geriatric Interest Network. Since I  had just done a display at our local mall and this one would be smaller, I believed it would be much easier.

Of course, things don't usually go that way. The person coordinating the conference was suddenly no longer the one in charge and her replacement had never coordinated one of their conferences before. It was no longer clear whether the permission to display would still be granted. After waiting a couple weeks, it was finally approved and the fee to display was again waived. The coordinator and I touched base a few times and the day before the event, she called and told me that I could definitely have some space on the display table. 

Problem! I have a display board and enough materials to fill an entire table with no room left over. As I usually do, I started to panic and then realized I was defeating myself. I decided that even if I could only display a portion of the AFTD's information, that was more than would have been there previously. This organization sponsors conferences for both professional and non-professional dementia caregivers each year, for a total of four a year. I really needed to be as cooperative as possible so that we could have the opportunity to display at more of their conferences. 

I am not known for my calm and laid-back personality (to put it mildly), but this time I was and there was a reward for this phenomenon. When we arrived (My sister is also a volunteer for the AFTD), the original coordinator was there right beside the new one. They had an entire long table set up for us right next to their registration table and bent over backward to make us comfortable. The last part of their conference was a healthy lunch and they insisted we join them. We felt totally welcome and part of the event.

The conference was held at a local rehab hospital, Health South. They closed their employee cafeteria to accommodate the conference and could not have been more helpful. The best part was, that since the cafeteria was closed, the employees had to go into the kitchen area to pick up their lunch "to go." The way to the kitchen was right past where our display was so we not only had exposure to everyone attending the conference, but also most of the employees.

Many staff members stopped by and checked out the display and many picked up some information or asked questions. The best and worst moment of the event was when one of those staff members stopped by and was closely reading my display board. I started picking up some printed info to give her and she turned to me with a look of joy and sorrow.

This woman started saying, "This is me, this is me! I keep telling the doctors there is something wrong, but they won't believe me." Considering this is the town where all I received were three incorrect diagnosis, I was not surprised. We gave her all the information we could, along with the hotline number for the AFTD. She gave me an awesome hug in return. My sister and I were so happy that we were able to help her. We were also broken hearted that one more person most likely has the disease. 

I am guessing she was in her mid to late 50's. I don't know what her position is at the hospital, but she definitely was someone I would love to have caring for one of my loved ones. I pray that we are wrong and that there is a much better answer for her symptoms than FTD so that this awful disease does not have the opportunity to steal one more valuable life.

The conference itself strayed from their usual format of having healthcare professionals come in and speak about dementia. This time, it was all about "caring for the caregivers." They had massage stations, reiki stations, yoga and more. All things to help the caregivers learn to relax and take better care of themselves so that they are better able to care for their loved one. 

I know I often write about how important the caregivers are and wonder whose role is harder, the one with FTD or the caregiver. It was wonderful to see this organization recognizing that and providing some comfort and reminding the caregivers how important it is to take care of themselves so they are able to take care of their loved one. I was so happy to see the direction they had taken for the event and I loved seeing so many relaxed and smiling caregivers as they were leaving at the end.

I hope the Geriatric Interest Network appreciated what we did as well because I hope to be welcomed back again for their next conference. 

Of course, the event took its toll on me. I was totally exhausted after the six hours. My FTD symptoms worsened afterward even though I was so happy. It continues to amaze and frustrate me how anything can cause a setback. Fortunately, this time, I should bounce back after two or three days of extra sleep and less activity.

If you are a caregiver, please remember to take care of yourself first whenever possible.

Financial Impact of FTD

I received some very interesting information today from The Association for Frontotemporal Degeneration. They co-funded and co-authored a study on the financial and social impact of FTD. The entire study will be published in Neurology magazine's Nov. 14 issue.

The first thing that caught my interest is the revelation that families dealing with FTD face an economic burden of around $120,000, roughly half that of families dealing with Alzheimer's Disease. This brings the obvious question: Why?

Unfortunately, most doctors are still unfamiliar with FTD. It is often misdiagnosed as Bipolar Disease, depression or another mental illness. They also discovered that it takes, on average, nearly four years to get a correct diagnosis. That means fours years of bouncing around to different doctors, trying to find an answer. It can also mean the expense of multiple medical testing that may be unnecessary, incorrect medications and doctor visits.

FTD most often strikes before the age of 60. Because of the younger age, it is very likely that, prior to diagnosis, both the one with FTD and their spouse were still working and contributing to the household income. FTD compromises the employment of many with the disease. Many are discharged from their employment or come to the realization, on their own, that they can not continue to do their job. Unless they are fortunate enough to have the best of short and long term disability insurance and are eligible for early retirement benefits, the household income is reduced drastically. Trying to survive only on Social Security Disability Insurance is nearly impossible.

The usual caregiver for someone with FTD is the spouse, who  is most likely also still employed at the time of diagnosis. In many instances, the spouse must also give up their job in order to provide care for their loved one. If not, there are many expenses incurred for other methods of providing care.

In the study, a year prior to diagnosis, overall household income ranged from $75-95,000. A year after diagnosis, that income had declined nearly half. If the care-giving spouse is still employed, the study found that 37% of caregivers reported not being able to continue working, If they were still working, they reported a median loss of seven full work days over the past four weeks because of issues involving FTD. Two thirds of caregivers also reported declines in their own health. The stress of being a caregiver is enormous.

The financial burden is not just from reduced household income for both the one with FTD and the caregiver, but also from drastically increased medical expenses. Even with the best medical insurance, co-pays and non-covered services can quickly add up to significant amounts.

In many cases, the person with FTD has made poor financial decisions that can also add to the financial burden. If placement into a care facility, such as a nursing home, becomes necessary, financial resources are quickly consumed.

If I may, I will step beyond the study of the financial impact of FTD. Most everyone has dreams of retirement and have many things they are looking forward to once they do. You may call it a "bucket list" or just plans to finally kick back and relax. Perhaps the plans are to travel, perhaps to buy a fishing boat or spend more time on the golf course. FTD steals those plans from the one with FTD, the primary caregiver and perhaps extended family. Plans to spend and enjoy time with the grandchildren become very difficult if not impossible.

With FTD, the memory is usually spared until the end stages and they are fully aware of what is happening. They know what they are missing out on and that their plans for retirement activities may now be impossible. The caregiver, in addition to this being a full time job, 24/7, they usually are forced to give up their own dreams of life in retirement.

All this information explains one way that FTD can force everyone involved into a period of grief, way before the life actually ends. This is another issue that I will write about another time. We don't need another depressing topic on top of the financial burden.

Avoiding Conflict

Yes, I do know that I just posted an entry yesterday. I did not have a clear vision of what I was going to write, but since it was Saturday, I forced myself to do it. Guess what? Today really is Saturday! I also remember what I wanted to write about. So you get a bonus entry this week. Thank you FTD - the Great Confuser!

Being a caregiver for someone with FTD is a constant challenge and the demands are often changing. Being someone with FTD is a constant challenge and the demands are often changing. Yep, same for both. I have been both and have often said that I do not know which is more of a burden. They seem pretty equal to me. I do have some suggestions.

If the person with FTD repeatedly keeps doing something incorrectly, lecturing is probably not going to help. This morning, I went out onto the deck. If the deadbolt at the bottom does not spring up the way it should, it drags. It makes a racket and gouges into the door frame. I know that. If I remember right, I was the one who first realized it was happening. Still, my husband insisted on demonstrating it for me so that I "would know." I responded, in irritation, that I know that. He continued the discussion by saying something like, "Then why didn't you do it right?"

Where did he go wrong? When I opened the door, I kind of heard the grinding noise, but my brain is not capable of immediately linking that to the deadbolt dragging. I was focused on going out to clean the window over my kitchen sink. That was all I was focused on. I can only focus on one thing at a time. His pointing it out to me only succeeded in upsetting both of us.

That is the way it is with FTD. I have repeated my mantra on here many times: "One Thing at a Time." That is the limit of my abilities. If you try to add in something else, it prevents my brain from making sense of either thing.

Another trigger point can be avoided as well. When you hear the one with FTD try to explain something to someone or watch them do something and you disagree with the way they are doing it, stop and think about it for a few seconds before acting. Surprisingly, it is entirely possible that they are right. Often times, it may not be the way you would do it or they used to do it, pre-FTD, but it may be a way for them to successfully accomplish the same thing now. The same is true for what they are saying. It may take longer to get the point across, but if you let it go, it might work. It may also not, but it is better to wait a bit and see if they eventually get their point across.

The perils of butting in during these instances are many. First of all, you will be breaking their train of thought so that there is no hope of them finishing what they were trying to say or do. This will lead to total frustration on their part and they, most likely, will lash out at you. That frustration and anger can last the entire day or longer and make absolutely everything more of a challenge for both the one with the FTD and the caregiver.

If it was me, what I would prefer is that my caregiver gently touch me to get my attention. When my focus shifts to them, that is when they can steer me into a different direction. That can be by reminding me of a fact that I am forgetting something, whether it be in a conversation or an attempt to do something. Do not take over. This only accomplishes making me angry and frustrated. It also leaves me with the impression that you think I cannot do it, which leads me to feel worthless. I can assure you, that is one of the worst feelings to someone who used to have a vibrant and worthwhile life.

One thing that I don't believe I have ever written about before is us being a back seat driver. Giving up the driving privilege is extremely difficult for many of us with FTD. If you think about it, we are giving up a huge chunk of our independence and even our sense of self-worth. Not being able to drive makes one totally reliant on others for everything... shopping, doctor visits, visiting friends, just everything. It can be even more difficult in areas of no bus service, no cab service, no Uber.

Think about when you ride with someone else. If you see a peril and you don't know if the driver sees it, what do you do? You probably try to point it out to them. It can also be difficult to not mention a better route if you think you could save time that way. It is that way for someone with FTD as well, only much more so. When you also, in many cases, add in distorted vision, double vision or no peripheral vision, it can cause confusion and panic for the one with FTD.

Among other vision issues, I have totally double vision. What this does, when in a vehicle, is that if a car is approaching in the other lane, I see two, side by side. This makes it appear that one of the two is in our lane.  It causes me to be extremely on edge the entire time we are travelling anywhere. If you add in the driver missing a turn, getting close to the edge of the road or just any little variance, that being on edge quickly becomes full blown panic.  I do understand how frustrating that can be to the driver and how it could actually cause an accident. I can understand that, consciously, but I cannot stop my reactions. I cannot reason with myself to calm down and trust the driver. It just won't work. Sometimes I think I should ride blindfolded.

One of the things that FTD steals from us is impulse control but, at least for me, it also gives a sense of being out of control at the same time. I can no more withhold my panic, comments and warnings in the car than I could withhold removing my hand from boiling water. Oh, wait, bad example because I have done that, but you get the idea. It is instinctual, it is not something we are deliberately doing.

I will take a moment to mention transportation for seniors. I believe every area must offer it in one form or another, at least in Pennsylvania. In my area, it is van transport. Something to know is that if you have a disability, you do not have to be over 60 or 65, nor must you provide proof of the disability. The cost is minimal. I can use our senior vans, but they make limited runs so I might have to wait an hour or so before and/or after a doctor's visit. It is an option and has been quite useful a few times for me even if it is not the most desirable choice.

The main point I am trying to get across is that we do not do things to deliberately make your life more difficult. We do not do them to pick a fight or demand attention. The way we act or react is instinctual in nature. We do not sit there and think it through and come up with ways that we might irritate you. We react. As I said above, we have no impulse control, we think it, we do it or we say it. We have no empathy. We do not have the ability to wonder how this is going to affect you or anyone else. We have no sympathy. We do not have the ability to see how it affected you and feel sorry for hurting you. We don't realize that we have hurt you.

Don't be afraid, when we do or say something you don't like, to CALMLY tell us how it made you feel. We still might not care but, then again, we might. It also might let you feel a little better as well by getting it out in the open. Try not to raise your voice and say things accusingly even if we are raising ours. This will just add to our frustration and anger. I know this is a tough thing sometimes to ask of a caregiver and that it will often be pretty darned tough to do. I am hoping, though, that you might just see some things through our eyes and be more forgiving of the way we may react to you.

FTD World Awareness Week Wraps Up

This week has been FTD World Awareness Week. I'm sure a lot of my Facebook friends got tired of me posting about it every day. For those of you who did not see yesterday's post, it read:

 "Still World FTD Awareness Week: No catchy picture today, just me: Dementia and Alzheimer's is not the same thing. Dementia is not a disease. It is a symptom of many different diseases. Yes, Alzheimer's makes up about 80% of all dementia cases of those over the age of 60. FTD makes up most of the other 20%. However, FTD is the cause of 90% of all cases of dementia under the age of 60. Scary numbers, yet it is not as well known. It does not get recognition nor money for research. There are medications to slow down the progress of Alzheimer's Disease, not a cure, but slows it down. For FTD, there is nothing. It is a life-ending disease, no question about it. There are no medications to slow it down. There is no known treatment. There is no cure." (I must correct myself on this. The Alzheimer's medications slow down or improve the symptoms of the disease, but it does not slow down the disease itself.)

Every time I read about or write about these statistics, I get angry, really angry. Someone reminded me today that FTD was discovered years before Alzheimer's Disease, yet it is still overlooked and misdiagnosed. A fact that I find interesting is that it was explained to me by a local cardiologist. He practices in this same city where the neurologists, from my experience with them, seem to know not much at all about FTD, if anything. Seems like it should be the other way around or that, perhaps, the different specialist should communicate more with each other.

Online this week, I did come across the results of one interesting study that was done at the University of Pennsylvania involving FTD. They were studying to see if it could be diagnosed from a special scan of the retina. The results are showing that it does seem to work for FTD and other diseases that involve dementia. The results show that with FTD, there is significant thinning on the outside of the retina. years before diagnosis by conventional means. I found it fascinating so I thank whichever of my friends posted it for us all to see.

This study really jumped out at me because I started having serious retinal issues about six years or so before I began noticing any symptoms of FTD. I discussed the study with my retinal specialist during a checkup appointment this week. He had not yet heard of the study and seemed interested . He was doubtful, though, that it would have worked in my case since the entirety of my retinas are extremely thin for other reasons. It will be interesting to continue following this study and any results that develop from it.  It is exciting to see positive results of any FTD research.

On another personal note, I continue to experience constant headaches on the left side and the left front section of my head. I have explained before how these headaches are worse than the worst migraine headache I have every experienced. In addition to these headaches and my increased difficulty with swallowing, I am feeling extreme paranoia. I already know that FTD is out to get me, no doubt about that. However, now, I am feeling as though everyone is deliberately doing bad things or saying bad things about me. I have no clue as to whether the headache and paranoia have anything to do with each other, but they both are definitely having an effect on my quality of life. 

The headaches are having another effect as well. Trying to think through the pain is difficult. The pain is affecting my ability to concentrate and focus. For instance, if I have the television or music on and someone begins to talk to me, they have finished what they are saying before it registers in my brain that they were talking. This gets a little old and frustrating for everyone around me, I am sure. It is a magnification of the "one thing at a time" concept I mention so often.

With World FTD Awareness Week coming to a close, I will now be focusing on preparing for a table display that I am doing in a couple weeks at a local event. This event is for non-professional caregivers and is "Caring for the Caregivers." What a great idea! Instead of speakers as they usually have at the caregiver conferences, they are having massage therapists, music, Reiki, yoga and much more. Sounds like just what the caregivers need. They don't get enough credit for all they do nor do they get a respite from their task. 

Executive Functioning and the Spinning Brain

My brain seems to be going into its "spin cycle" a lot more often these days. Those of you who do not have FTD may not understand what I am talking about. I keep harping about "one thing at a time" and have been since my diagnosis. As the FTD worsens, this principal become more important.

When I am doing something and someone starts to talk to me, my brain goes into that spin cycle and cannot stop to concentrate on either what I am doing or what they are saying. I must pause for around a minute, blank everything from my brain before moving on to focus on the new thing, usually the person talking. I picture it as my brain in a spin cycle and having difficulty finding a cog to slow it down.

I don't know if I am explaining this well enough for anyone to understand. This is part of what is called "executive functioning" and is controlled by the frontal lobe of the brain (Of course, frontal is the "F" of FTD). This is the part of the brain where we analyze and plan a task, organize the steps needed to complete the task and keep to a schedule. It allows us to be flexible and adjust as you go along (cognitive flexibility).

With limited, or no, executive function, due to FTD, the brain has trouble organizing and planning, paying attention to those and things around you, switching focus and shifting between activities and prioritizing  tasks. This is the part that is making it nearly impossible for me to switch from one task or thought process to another.

Other problems created by loss of executive function can be not being able to remember details of things. You may remember that you used to build birdhouses, but can no longer remember how you did it. You may be misplacing things or forgetting what you were doing. Damage to the frontal lobe is also what causes difficulty withholding a response or self monitoring of the appropriateness of that response. Now, that part gets me into a lot of trouble sometimes.

I have trouble with all of these things, but right now it is the "Allows us to be flexible and adjust as you go along" part that is impacting me most right now. The loss of that part of my executive functioning is what keeps me from being able to fully realize someone is talking until they are halfway through what they are trying to say. I have to stop doing what I am or thinking about what I am before I can even ask them to repeat themselves. I usually end up shouting something like "Stop, stop!" then waiting however I must to get the brain back in gear before I can pay attention to what they want. Of course other days, I just throw whatever I am holding at the person or calling them nasty things.

This certainly is frustrating for me and I am guessing most of those with FTD. It must also be extremely frustrating to the caregiver and all the other people in our lives. I know how it affects interaction between my husband and me. It is difficult for him to understand how even a tiny little thing occupying my brain can shut down the rest of the brain. It can be something as innocuous as listening to music, leafing through a catalog, or looking at the birds.

It is very exhausting as well. Forcing the brain to keep spinning or bouncing around wears me out. After enough of it (and it doesn't take much), I am done for the day. I am worn out physically, mentally and emotionally. I know that I am not going to function anymore until after a long night's rest. Those are the days I have to send my husband out to pick up dinner or thaw out something in the freezer that he can throw together for us. Odds are that I won't be able decide which option to take. It is also the times that I withdraw to my room by 7 pm.

I still don't know if I explained this well enough. The brain is a complicated thing and what makes sense to someone with FTD does not necessarily make sense to someone with normal brain function. Hopefully, you will understand and, just maybe, it can bring a little more peace to your household.

Yes, This Disease Does Suck

If anyone is offended by what I say next, so be it.  FTD = F*** This Disease. I actually have a key fob attached to my purse that said "FTD Sucks." Same thing, just cleaned up a bit.

Many caregivers will disagree with this, but those of us with FTD try really hard. We struggle constantly with the symptoms and everyday frustrations. We struggle to overcome them, but if that doesn't work, we hide it as well as we can. That is a small part of why so many people look at us and think there is nothing wrong with us. We are that good at covering up how badly we are doing.

We try not to complain about everything that FTD brings. I believe that if most people had to suffer the FTD headache for just a few days, they would be running to the doctor or emergency room to get relief. I think I have mentioned before that I have dealt with migraine headaches throughout my entire life. If I take my absolute worst migraine, one that would have me hiding in a dark and quiet room, in tears, and multiply it by 2 or 3, I have described an FTD headache. Add that constant headache to all our every day struggles and it can be pretty darned overwhelming.

We try not to complain about how frustrating it is to not be able to do things that used to come naturally. That even includes the difficulty many of us have just walking and talking. Okay, I said we TRY. Some days we are successful, others we are not. There are days when I wouldn't want to live with myself. Yes, I know when I am being like that. I just cannot do anything about it.

There are days that my FTD symptoms are no worse than other days, but I still feel really depressed and should not be allowed to interact with others. On those days, if you ask what is bothering me, I wouldn't be able to figure it out and would probably bite your head off for asking anyway. A couple weeks ago, I wrote about how urinary tract infections can cause this. Other nagging little illnesses can as well. If I get a tiny little cold, I feel like I am at death's door. My body and mind are so worn out dealing with the FTD that there are no reserves left to deal with anything else. Illnesses are not the only thing that cause some days to be worse than others.

That is why, when I am trying to do something that would have been simple before FTD, I throw a temper tantrum or just fall apart. Yesterday, I decided to vacuum out our car because I noticed it needed it. I vacuumed the passenger side first since that was where the electrical outlet is. When I finished that, the trouble started. I could not figure out how to do the other side because the nozzle didn't reach that far. It took several long minutes to figure out to move the vacuum to the other side of the garage. To compound it, that didn't work because the cord wasn't long enough. After much swearing and stomping, I remembered how I used to do it. It is a small portable vac so I simply set the vacuum on the passenger seat, walked around the car and voila!

This event was disheartening enough, but it could have been worse. If someone had observed me being so confused, it would have made it worse, especially if they tried to "help". It seems like at least half the time anyone tries to help, it comes across to me as demeaning and condescending. I end up feeling stupid because I could not figure out how to do it and embarrassed that someone thinks I'm pretty darned stupid as well. What would work best, at least in my case, is to simply say "If you need help, I am right here." then step back. Don't try to take over and, above all, do not laugh! After I start laughing, feel free to join in.

It can be other things that cause our bad days, not just illnesses. Three days ago, after struggling all day with everything being difficult and an overwhelming sense of sadness, I finally remembered that it was my aunt's birthday. My aunt was a huge part of my life. Growing up, she always made sure that I knew I was loved even when I was not receiving that message in my own home. It was in her home that I learned that family members could have disagreements or laugh at each other without hating each other. When I stayed with them, I rarely made it through dinner without my cousins having me laughing so hard I couldn't breathe,usually by making fun of me. That was okay though, because there was also love there. I also learned that when my uncle was being cranky, it didn't have to ruin everyone's day.

Coincidentally, she started showing signs of dementia right around the same time I was being diagnosed. Hers progressed much more rapidly than mine, so I was functioning well enough to be able to act as one of her main caregivers. I had the privilege of sitting at her bedside in the hospital for the final three days of her life. I know that I was letting her know how much she was loved, just as she did for me throughout my entire life. Thank you for indulging me and letting me extol her virtues. She had many of them.

FTD has stolen my ability to know what day or date it is, so my mind was not able to know that it was her birthday. The heart, though, can be much stronger. It knew that it was a special day to remember. Finally realizing it was her birthday, wishing her a happy birthday and thanking her for all she meant to me, even though the wishes needed to be sent to her in heaven, lightened my load and I was able to enjoy the end of the day. I could feel her laughing along with me at that dinner table and reminding me that I can do this.

It is important for caregivers to understand that there can be reasons why we act more nastily some days. We can be feeling ill or can be uncomfortable from something as simple as having my shirt on backwards... again. It is things like this that make me have that feeling that there is something wrong, but can't figure out what. We could be missing someone or missing something we used to do. I spend a lot of hours feeling angry because I can no longer do any artwork.

So, yes, this disease sucks. It sucks for those of us with the disease and it sucks for those who have to live with us. We just have to stick together and muddle through the bad days.

Deniers, Disbelievers and Ostriches

I try really hard to keep my spirits up and to downplay my FTD when I am around others. Those of us with FTD still want to have some fun and enjoy some bits of a normal life. It is difficult to enjoy being with people when they are acting like I am going to die next week or that I am imagining the disease. That is one end of the spectrum. The other end are those who ask how I am doing but when I start to explain some worsening symptoms, they zone out. They don't want to hear that. They want to hear me lie and say everything is just great. It becomes pretty darned difficult to keep a smile on my face some days.

There are several different categories people, depending on how they react to my FTD. I am pretty darned sure it is the same with the others with FTD as well. It is important to know that I am not in this alone and remind you that nearly 20% of all dementia cases are caused by FTD. They are not all Alzheimer's Disease related.

The first type of people is one I have talked about many times. These are the ones that when I tell them I have the disease they argue with me. They argue that I look too good or I remember too well or I wouldn't be able to do things so well if I had dementia. Many of these people have no knowledge of FTD and don't care to listen. I believe they truly think I don't know what I am talking about. These I call "The Disbelievers".

The second type are the friends and family who are frightened off by the disease. They have disappeared from my life in droves. This is something I hear often from others with FTD. Some times I actually think they believe it is contagious. I suspect that it is more that have cared for or known of someone with Alzheimer's Disease. Since most people think all dementia is Alzheimer's, they are not wanting to deal with it again. Some find excuses to stay away. I don't think this is to explain it to me. It is simply easier to stay away if they convince themselves there is a reason. I admit it is difficult to be around me or anyone else with bvFTD at times. We can end up coming across as being pretty darned obnoxious more often than I would care to admit. Yet, I believed my family and friends would be with me and support me through this journey. Don't get me wrong, there are still a small hand full who totally support, have learned about the disease and try to help. Other than these few, I call them "The Deserters".

I thought these first two groups were the worst. They were the worst in the earliest years of my disease. However, now that most of them have removed themselves from my life, I deal with them being out of it just fine. I understand why they walk away or avoid me, I truly do.  It hurt at first, but like the old adage, you learn who your friends are.

Now we come to the next group... "The Ostriches". These are the people who have stood by me but are in denial of my FTD and the resulting dementia. They still think I should be able to do all the things I used to do. Part of this comes from me trying to  keep a happy face. Add in the fact that I do push myself to do as much as I can. If someone sees me out doing some yard work or sees that I have baked or cooked something really yummy, they still rave that it is wonderful that I can still do these things. What they don't know, or choose to ignore, is that my energy stores are quickly used up each day. I have about a 2-3 hour window, usually midday, where I can be productive. The things I manage to do are nowhere even close to what I used to be able to do. I am pretty much limited to one activity a day, whether it is spending an hour pulling weeds, cleaning the kitchen floor or going out to lunch. That is it for the day and, sometimes, wears me out enough that I can't do anything the next day either. The ostriches don't see that because they choose not to, whether it be a conscious decision or not. Sometimes they hurt me worse than the ones who have distanced themselves.

The past two weeks have been particularly tough for me. Several of my symptoms have worsened. My legs are getting worse and cause me to stumble and lose my balance more often. Some days, usually toward evening, my right leg will drag. I must step with my left leg, then drag my right leg along, holding on to things as I go along. My headaches have been nearly unbearable and pretty much constant. No medications help them. My speech problems have escalated to the point that it is often too much of an effort to carry on a conversation. I have had trouble swallowing more and more often. I actually became panicked in Sam's Club last week after tasting a food sample and beginning to choke. Fortunately, my husband was with me and kept me calm until I was able to clear my throat. My double vision is significantly worse and never corrects itself anymore, it is constant and adds to the headache issue. It is also extremely frustrating. It used to just double my distant vision, but it is now affecting my near vision. I am frightened that I will no longer be able to read.

The ostriches in my life choose to ignore these changes. I was silly enough that when a friend asked how I was doing, I told the truth. The reaction was "Oh, to me you seem just like you always have." said in a condescending way. I don't believe this person was deliberately brushing my disease aside, but rather was denying it to themselves. The other frustrating thing that occurs is when someone will ask me to do something. I say that I don't want to or would rather not. What I get is those wonderful words, "But you've always been so good at it, much better than I am!" I end up, full of anxiety, and loudly explaining that, yes, I used to but not anymore.  I compound this problem by eventually giving in nearly every time. I know I shouldn't, but it becomes easier than arguing or listening to them whine.

The last type of people I will discuss are those who, while having a basic understanding of FTD, do not comprehend the symptoms of it. For instance, the lack of empathy that I have often explained. If you call me to tell me your problems, I will listen, but I don't really care. I have no feelings of empathy or sympathy. I also tell it like it is which comes from the lack of filters between brain and mouth. If I know you are wrong about something, I won't tiptoe around it, I speak it out loud and proud. In addition, if you start complaining about something like a headache you have had for two days, a sore leg or being tired, it doesn't mean much to me. These people are kind of like the ostriches in my life. The difference is that they don't deny there is something wrong with me, they just really, really don't want me to have it. The biggest difference, though, is that they are here for me when I need them.

FTD blunts most emotions which can truly offend people who won't take the time or effort to learn about the disease. I was shocked last week while watching the rescue efforts following last week's hurricane in Houston. Everyone was raving about the wonderful rescues of people and their pets. I was happy they were rescued, but not really touched emotionally like I would have been pre-FTD. One event actually made me shed tears. One of the volunteers risked his life and went into a destroyed house to rescue an animal. He spotted a wooden display case containing a folded U.S. flag. Knowing that it was most likely a treasured keepsake honoring a loved one, he continued to risk his life and got it out. I have one of those flags on my fireplace that was presented to me at my father's funeral and know how much losing it would mean to me. I was so touched by this small act of kindness by one of the heroes.

It is interesting how every once in a while, something will make it through to my emotions. It was a touching, sad yet happy moment in someone else's life that finally allowed me to shed a few tears. That is the way it is with FTD. Yes, we are still the same person we used to be. We just are unable to behave the same way, speak the same way, move the same way or live without pain. Others may not be able to see that we are still in there, but it truly is their loss. When they see someone doing their best to cope with FTD (and other life ending diseases), they should be in awe, not afraid to remain in their lives.

Urinary Tract Infection and Dementia

If you are a regular reader of my blog, I suspect you noticed that the past couple entries were me ranting and being upset. It was a carry over from the way I was feeling for the past 1-2 weeks. I was angry, agitated and pretty darned tough to live with. I was lashing out at things and people, but had no idea why I was feeling that way.

Two days ago, the light bulb went on. For the past couple years, when anyone would describe feeling that way or their caregiver would describe a sudden worsening of dementia symptoms, the first thing I would say was "Have you checked for a urinary tract infections (UTI)?" I did not understand why, but from listening to others, it was quite common for a UTI to cause worsening of symptoms and I would share that information. I pulled out a test strip and, sure enough, I had a UTI! The doctor insisted on seeing me and testing it herself before prescribing.

While with the doctor, she asked me what my symptoms were. I told her that, looking back, I was experiencing more frequent urination, but certainly not enough to really notice. She asked me what caused me to check it. I told her that she would probably think I am crazy but it seems that with FTD, urinary tract infections can make our symptoms worse.

She explained that I am not crazy (though some may dispute this) that it is not just with FTD. She went on to explain that even patients, who have no diagnosed dementia, are brought in because they are showing symptoms of extreme dementia that came on suddenly. It can sometimes as bad as not knowing where they are. All this time, I was mistakenly thinking it was a fluke thing with FTD. An undiagnosed UTI can present with agitation, lethargy, decreased mobility and more Having dementia makes the problems even worse. By the way, I should have suggested she explain this to her staff since the nursing assistant who did my intake did indeed look at me like I was crazy when I explained why I checked. Then again, my paranoia had also been stronger for the same time period.

Urinary Tract Infections are more common in older adults. They can be caused by incontinence or bladder leakage leading to prolonged exposure to urine. Interestingly enough, constipation can aggravate the problem as well because it often prevents the bladder from completely emptying. Some ways to prevent them is to urinate more frequently, perhaps on a regular schedule, keeping the genital area clean after going to the bathroom, and drinking plenty of water. All of these advised precautions can be very difficult for someone with FTD and a real challenge for caregivers.

My familiarity with UTI's is more from when I was younger. Younger people develop more distinctive symptoms such as frequency, pain or burning during urination, pain in the abdomen or back and even fevers. Unfortunately, in older adults, the body begins to react differently to infection. A frequent theory is that it is due to the fact that our immune system is different when we are older. Because the symptoms are not those commonly associated with UTI's, the infection can be not be recognized and and can go untreated for a long period of time. It is possible for the infection to then enter the blood stream, making it life-threatening.

The Alzheimer's Society explains that UTI's can cause behavior changes including confusion, agitation, restlessness, delirium, mobility including falls and general worsening of dementia symptoms. The sooner treatment begins, the better. If the UTI goes untreated for an extended length of time, the worsening of the dementia may become permanent. That raises the question as to how can there be a connection between urinary infections and the brain? It seems that a UTI can be a serious strain on the body, a physical strain and a mental strain. This can also be said about any illness but, in the case of UTI's, that illness can go unrecognized.

Urinary tract infections do indeed play favorites. Women are three times more likely to get them. This is explained by the shortness of the urethra in women compared to men. On the other hand, prostate issues can cause more frequent UTI's in men due to the difficulty in completely emptying the bladder.

I had been complaining for nearly two weeks that I was exhausted. One night, I slept for 16 hours. I had no energy to do much of anything at all. Low and behold, another symptom of a UTI in those with dementia is often fatigue and general malaise. That sure described me. I didn't want to, or have energy to, do anything. My husband and I normally set recurring appointments (B12 shots, chiropractor, hair cuts etc.) on Thursdays. We call it our errand day and it limits the number of times we have to drive to town. After we are done for the day, we usually stop somewhere for lunch, usually at our favorite diner-type restaurant. This past Thursday, he asked me where I would like to eat. He mentioned a few places and I started to panic. He tried to think of quiet, uncrowded places, but I became more and more agitated and insisted he take me home. It took several hours to calm myself down. I usually enjoy these days out and that is how I knew that there must be something was going on and that is what triggered that light bulb coming on.

Now that I have researched this subject, the next time I ask "Have you checked for a UTI?", I will better understand why I am asking. A couple final notes... If the person with FTD begins to get URI's more often that 3 times a year, their doctor may suggest putting them on a prophylactic antibiotic treatment. This usually means taking an antibiotic every day. Test strips for urinary tract infections can now be purchased in most all drug stores. They are pricey, about $12 - $15 for a box of three. When you compare that to three co-pays and the inconvenience of going to the doctor's office every time you think "Could it be a UTI," in my mind is a good value.

Oh, and please go drink some water... and do it often!

Some Days I CAN'T Smile

As long as I was complaining in my last blog that I wrote just a couple days ago, here I go again. At the risk of offending a very dear friend, I must use an example that features her. She shall remain nameless.

I have talked so many times about how frustrating it is when people don't believe me when I tell them that I have Frontotemporal Degeneration. They say things like, "But you seem fine" or "Oh, I do that too, that isn't dementia!" It's not that I want anyone's sympathy that I have this disease. Actually, I guess when they say things like that, it is a compliment that I am functioning well enough, despite the disease, that they cannot pick up on it. Although, if anyone is around me for any more than a brief moment, they should be able to pick up on at least some of my symptoms. I am not alone in this sentiment. It is one I commonly hear from others with FTD.

As I have written before, I understand this denial because mostly everyone who hears "dementia" hears "Alzheimer's" instead. This is one of the reasons I work so hard to educate others and spread the word. It's part of the reason I write this blog. This reaction is so common, I can usually just brush it off. It is yet another kind of denial that frustrates and hurts me more lately.

In my last blog entry, I elaborated on how I can tell that I am getting a worsening or developing a new symptom. Since writing that just a few days ago, I have had other FTD'ers say that this is true for them as well. That makes me feel better, knowing that I am not imagining it. I do not understand how my loved ones can not see the decline. Even if it is gradual, it seems that those who spend much time with me would pick up the signs. Then again, perhaps, when it comes on gradually, it isn't as obvious.

That dear friend I mentioned calls me nearly every night. Sometimes, I just can't handle it. For some reason, I have hated talking on the phone for the last twelve or so years. Precursor of FTD? Perhaps, I don't know. She called me the other night and I was not very responsive and explained that I was sorry but I was really, really grumpy. I explained that I was sleeping 12-16 hours each night which is highly unusual as well as having more trouble with getting my legs to more properly. Still, on another day, I was still grumpy and she responded with something like "Ah, just smile. You know a frown is just a smile upside down." Now, that is a sweet thing to say and I appreciate her attempt to make me smile but it doesn't help. She is not alone in this, so I really, really hope she does not take offense with this. She just happened to provide me with a great example of the frustrations I get with many others as well.

When I am in that time period when I know something is coming on, my speech problems become much  more evident. That alone should be enough to trigger "Uh-oh, what's going on?" If someone is observing a worsening symptom, it should be obvious that there is something FTD related going on. I insisted on explaining after she had kind of brushed it off. I explained what was happening and it was just so frustrating that I was struggling to deal with it right then. Later in the conversation, she did pause and say that, like so many others, she thinks that perhaps she is just in denial because deep down, she doesn't want to believe I really have the disease. Denial does not help me.

She isn't the only one to feel and act this way. It isn't just strangers and acquaintances that I encounter who dismiss my disease. It is friends, family and so many more who know me well. I totally understand. If the tables were reversed, I would most likely not want to believe that someone I love had a life-ending disease and would probably try to ignore or explain away the symptoms. I understand it, but it does nothing to help me. It simply adds to my everyday frustrations.

It is the same for those who read, usually on the internet, or hear on daytime TV or elsewhere of some new miracle cure. It can be a supplement to take, a diet to follow or scripture to read. Unfortunately, while there may be a small modicum of truth to the new discovery, it is usually just bunk designed to sell supplements, to sell a book, or sign up for therapy sessions. Beyond the fact that they are most likely just junk science, they are for Alzheimer's, people, not for FTD.

FTD and Alzheimer's Diseases both cause dementia. They are NOT the same disease. As an example, the medications that do seem to work to slow the progression of Alzheimer's Disease and its dementia symptoms are not helpful for FTD. In fact, it has been proven that these drugs can actually worsen FTD. If it is true with these drugs, does it not stand to reason that it just might be true of all the other supposed "cures" for Alzheimer's? My belief of this is so strong, that I am not about to spend my money or risk my health to try them.  This is why I get so angry every time I hear someone with FTD say that their doctor put them on the Alzheimer's drugs just in case they might work. Why would you do that? Why, when there is also a stronger case for them worsening the FTD?

Please remember, when you are trying to make light of someone's symptoms or diagnosis to try to make them "feel better," most likely it will make them feel worse. Dismissing the disease because it makes you feel better or you hope it will help me be an ostrich, with my head buried in the sand, only comes across as though you are dismissing me. Try something like, "Oh, I do not like that news, is there anything I can do to help or to make you feel better about it?" Don't minimize what is happening, don't brush it off. I already feel miserable enough.

I have already shut several people out of my life because of this problem. Anyone with FTD does not need negativity surrounding them. I try to be more patient with those who I know are doing it out of love. It isn't easy. This disease isn't easy.

Little Things Add Up

I started out last week's blog entry by complaining that I had just done something that caused me to lose a big part of what I had written. I just did it again, but this time, I lost the entire post... all of it! I click "save" every paragraph or so even though it is supposed to save automatically It used to be that if I did lose it, I could somehow get it back as a draft. If only this damned FTD would let me remember how to do that.

Ironically, my entire blog this week was about how it seems to be the little things that upset me the most. To me, this is not a little thing, it's a biggie. I will rewrite what I can remember even though I now have an even worse headache than what I was talking about.

I have a theory. I have alluded to it before but since I have absolutely no scientific evidence or others' experiences to back me up, it is just a theory. I truly believe that my brain knows when it is about to lose more function. I develop the worst of my FTD headaches... the ones that no pain medication can touch. They are kind of like my worst migraine x5. These headaches always seem to be a precursor to worsening symptoms. The other indicator to me is the need for sleep. All of a sudden I will be needing much more sleep than usual.

I have had the headache for a week or so now. Then, yesterday, after an exciting afternoon out of getting a haircut and having a late lunch at our usual restaurant (Yes, you are right, not exciting and should have not worn me out either,) I needed to lay down as soon as we got home. That was about 4:00 in the afternoon. I usually don't do naps so that I am able to sleep through the night. I woke up about four hours later after the phone had rung so I got up and had something cold to drink, visited the bathroom and went back to bed. I tried to read for a little while, but soon fell back asleep. This morning I was up before the crack of noon. Okay, it was 11:45, but that is before noon. FTD has killed most of my math skills, but I still think that was about 16 hours of sleep.

My thought at that point was that with that much sleep, at least I was rested enough to face the day. I wish! I settled down on the couch with my coffee and newspaper and except for some of the dreadful news, I was nicely relaxed. Then my husband prepared himself a little lunch, sat down on the other sofa and turned on the TV to watch a game show. It was only after it was on that he asked if it was okay with me. I thought it would be fine since now that he has hearing aids, he sets the volume so low that I can barely hear it even though my hearing is pretty darned good for a 64-year old. I was being pretty successful at blocking it out when he started asking "What did he say?" repeatedly. I was not exactly kind when I answered "I don't know, I can't hear it!" I took out my frustration by mopping the kitchen floor, so maybe it was a good thing anyway. After doing that, I retreated to my room which is my sanctuary.

My room does not have a phone and since my husband hates to answer the phone even though he can now hear on the phone. I usually bring a handset in with me. A couple hours after coming in here, the phone rang and I answered it. It was just someone calling to confirm an upcoming appointment. Half way through this brief conversation, he stuck his head in and asked who it was. I ignored him, said goodbye and hung up. He then goes on to explain that he was waiting for a call from Don. That was all the info I needed, but he elaborated that he had called Don and he wasn't home so he left a message. He explained what had prompted him to call and what answer he wanted for his question and all his reasoning behind it, including past experiences and the benefits it would bring him. He was greeted with a very rude "Whatever!!!"

That was enough reason to take a break so I went out to the kitchen to get a drink. Since I was calm by then, I stopped by him and explained how and why it would have been better to simply have said, "I am expecting a call from Don." Period, end of story. I wish. No, then he had to explain why he thought I should know all the minutiae again. To top it off, I spilled part of my drink while trying to pour it. That was the proverbial straw that broke the camel's back. I then said "Maybe I should just go somewhere and curl up and die." He laughed. I simply turned and said "When I say something like that, I am saying how I am truly feeling." No response.

It is not at all unusual for someone with FTD to have the feelings of wanting to escape it all but don't worry, I am not going to do that. My daughter would kill me if I did. Yes, that is a feeble attempt at humor. Seriously, after my father's suicide ripped apart our family, I did promise her I would never do that to her. Of course that was before FTD, but I know what it did to me and I would never do that to her, no matter how bad it gets.

The daily frustrations that mount up and ruin the day can be simpler things as well. Too many calls from a telemarketer, not being able to remember something, being unable to come up with the words you want, stumbling too often or just about anything else can do it.  I hope my husband will forgive me for telling of today's events. It is only because we are always together that our daily life so often provides examples for what I am trying to talk about.

I will stop complaining now about how the little things add up into a huge frustrations. I will stop because all of a sudden, I need a nap.  Plus I need to post it quickly so I don't lose it again.

PS: I don't believe this!  After I posted this blog, I found the draft of it I had written before along with the one from last week. So I'm happy to know that I was saving it, but still wonder where the heck it was hiding!

Trying To Do Some Good

Grrr... I did it again. I had this post almost completed then somehow deleted it. I wish my FTD would allow me to figure out how I keep doing this! Oh well, I will go with the belief that by having to redo it, I will find even more inspiration.

At the risk of sounding like I am tooting my own horn, I am going to talk about a wonderful event that happened two days ago. Our local newspaper, the Altoona Mirror and a large medical practice sponsored their annual Health O Rama at the local mall. In addition to speakers throughout the day and free testing that was being done, there were close to 50 table displays by medical related organizations, including a few non-profits. When I first contacted the newspaper about setting up a display for the AFTD, we were welcomed with open arms.

We had a lot of information and handouts for the attendees and I had my sister, also a volunteer for AFTD, to help. The newspaper estimated that approximately 1000 people visited the event. We had a significant percentage of those stop by our table for more information. It was a very rewarding experience for both of us and we already have signed up to display at an event next month at a different location.

When I was preparing for the event, I kept saying that if we reached just one person who needed to know about FTD, it would be worth every bit of the effort. We had several people who were extremely interested and they were planning to either contact the AFTD helpline or go to their website for more information. The biggest reward came in the last ten minutes of the event. A woman came running up, literally running and out of breath. She was staffing a different display at the other end of the mall and someone, knowing her family was struggling with someone who was displaying "strange symptoms," mentioned our display about a "different" kind of dementia.

The light bulbs just kept going on above her head the longer she talked to us and read the information. She kept thanking us for being there because she was definitely going to insist that the family member be evaluated for FTD. Like most of us with FTD, the family member was not displaying the recognized symptoms of Alzheimer's yet they were convinced there was something wrong. I will not say that I hope they get a diagnosis of FTD, because I would not wish that on anyone. I do hope though that they will pursue in getting a proper diagnosis.

It was not easy for me to do this event, to organize it, set it up and talk to people for four hours. By the fourth hour, I was often having to turn to my sister to finish saying what I was trying to say. When we packed up and got home, I realized that I could not lift my right foot. I had to step with my left and drag my right. It is the same side that the brain does not always communicate with properly, so I wasn't too worried. I slept over twelve hours that night and by the morning it was back to my usual "normal". I am sure there are lot of ways I could have improved the event, but I don't care (and it's not just from my overload of apathy) because I know I made my goal of reaching at least one person.

This experience of worsening symptoms occurring when stressed and/or tired is something I forget to mention much. It does happen and it is always a huge relief when I bounce back once I am rested and de-stressed. This is why those of us with FTD remind each other that when in a stressful situation, to take a break, find a quiet spot and recharge. If we try to push through it, the signs just keep getting worse.

I was determined to display at this event even though I usually avoid the mall at all costs I only shop at stand-alone stores or online. The mall has too many stores, too many colors, too many noises and just too many people. Add in background music and the vibration in the floor that they keep telling me is normal, and it leads to a quick overload. Looking back to before I was diagnosed with FTD, there was a warning sign I missed. I was at the mall with my daughter and my sister. We were on the top floor (the one that vibrates), it was crowded, too much noise and too much stimulation from all the stores. I stopped in my tracks and just kept saying "Get me out of here" over and over. They did and I was fine once I calmed down. It is experiences like this one that make it difficult for those of us with FTD to know exactly when the signs of the disease started. There are situations that occurred 25 years or so ago that, looking back, seem like they could have been precursors to the disease.

I have digressed, as usual, from the point of this blog entry. While doing this display was rewarding beyond belief, there were also some frustrations. They were the same frustrations that I, along with most of the other FTD'ers I know, experience way too often. I had the people who walked up and said that they are dealing with 'it' also. It only took a sentence or two of them complaining about their loved one with dementia to realize that they were dealing with Alzheimer's. It was wasted breath to explain how FTD is different.

One woman in particular came back three times and wanted to talk about Alzheimer's and how to deal with situations, like sundowning. It was obvious to us that the way she said she was handling it was probably worsening it rather than helping. We kept suggesting that she go online and look it up or go to one of the many Alzheimer's sites for help or to even go to the AFTD website. Often times, caregivers just need to vent and have someone listen to them, this is totally understandable. but this woman went beyond that. I will admit that I said a little prayer of thanks that she was not my caregiver! I was so proud of myself that I didn't blow up at her. I kept talking calmly and repeating the suggestion to go to the websites and wishing her well. I also kept explaining that my experience was with FTD, not Alzheimer's, which she either could not or would not grasp. Not bad for someone with FTD dealing with one of our most usual frustrations. At least no one came up and said "Yeah, I do that too!"

I am so happy that I took the AFTD's volunteer training 18 or so months ago. I am also happy that they realize that even though I have FTD, I still have abilities and value. I am touched beyond belief that my sister has also become a volunteer. What a sign of sisterly love! There is just something about this disease that makes many of us become determined to educate the world and try to do something to help solve its mysteries. I'm sure they, as well as I am, are determined that if they have to have this horrid disease they are going to make some good come out of it if they can. As long as I can talk or write, I will be trying to spread the word about FTD and the work of the AFTD.

Impulsive Behaviors

This morning, while lying in bed but wide awake, I wondered what subject I should write about today. I came up with a few ideas and really liked a couple of them. Just as some things seem to happen, a couple things occurred today totally changed my mind. Last week I attempted to describe how and why we blow up or break down. This week, I want to talk about something that also occurs in the life of someone caring for or being someone with FTD.

One symptom of bvFTD, as well as all the other categories under the FTD umbrella, is increased impulsive behaviors. This is also sometimes described as the loss of filters between the brain and our actions. One example that I often use is the day I decided to go out for our mail. Our mailbox is across the little street we live on. I exited my house, walked up the drive and began crossing the street. I totally forgot about the huge and heavy trucks that sometimes travel our road to get to and from a quarry. I learned 3 things that day: these trucks do not stop on a dime, the horns are very loud when the driver is laying into them and those same drivers have a very vast variety of swear words in their repertoire.

I was very lucky that day. If that driver had not been paying close attention, I would have become roadkill. This event was a total result of impulsive behaviors. I knew I wanted to get to the other side of the street but gave no thought about any risks involved.

That increased impulsive behavior is also why many of us with FTD make poor financial decisions. We see something in a store or on the internet and think it would nice to have or it's pretty, so we buy it. We don't stop to think about whether we have the financial resources to be able to afford that purchase or whether we will still be able to purchase groceries the next day. We also don't bother to figure out if we have any use for it, but danged if it didn't look good! This can be even worse. Many with FTD become shoplifters. They do not intend to break the law or steal. They simply see something they like and pick it up and take it. It's an impulse.  There is a defective or missing filter between brain and actions. We see it, we want it and now we have it. Not only does this cause huge arguments between the caregiver and the one with FTD, it also can cause huge legal issues as well.

Another large part of this FTD symptom is spewing out words without thinking about how they might offend, be inappropriate and just tick people off. This is easiest to explain as the lack of a filter between brain and speech. We no longer have the ability to think before we speak. I have experienced this problem hundreds of time. If I think it, I say it. A friend is wearing a green shirt. Instead of saying something innocuous like "You look nice today," I may say "that color looks awful on you." I have also developed a very large vocabulary of inappropriate and offensive words. This is not in character for me. I have been known to cuss a time or two or a few hundred but I never used the horribly inappropriate and offensive words that I use now. If I get angry, you are going to hear the "F word" at least a couple times. This was not my norm prior to FTD.

Another big part of  inappropriate speaking can be of a sexual nature. This can be telling a dirty joke to your friends at church or in the workplace. It can be making sexual innuendos to people, even strangers. Just like shoplifting, this can get you into huge trouble.

Another issue for increased impulsive behavior can be wandering. Why those with dementia often think they need to go home or need to go somewhere else is an involved problem. Part of the answer is that they just do not feel comfortable in their surroundings anymore and want to go find their home where they remember they loved to be, even if they are still in that same home. It is difficult to eliminate the impulsive behavior problem from the wandering issue. Things like is it day or night, do I know where I am going, am I dressed appropriately, will anyone know where I have gone and so many others do not occur to them before they wander off.

These activities, the wandering, the swearing, the shoplifting, the impulse buying and the insults, are not intentional. This is difficult for many who do not have FTD to understand.  Responses are often things like "It goes against logic. What do you mean he doesn't know that what he just said to me was an insult?" " Of course she knew we couldn't afford that new sofa." "He just doesn't bother to stop and think." "Of course he knows it was wrong to take that box of cookies without paying for it."
"How in the world could she say such a thing to me? She knew I would be hurt." "He's just doing that to irritate me."

Hearing someone explain that "It wasn't them doing that, it was the disease!" gets old really fast. It is human nature to be insulted and frustrated, even angry.  Think of the impulsive things that a child does or says because they have not yet learned that it wrong to do so. This is the same idea, but in reverse. They used to know but that knowledge has been stolen from them by the disease.

It is important for caregivers, loved ones and anyone else involved in the life of someone with FTD to try to stop before reacting. The one with FTD does not have filters, but the ones affected do. Take a deep breath and count to ten before you react. Remind yourself that it IS the disease. Would the person they were before the disease have done/said that? Reacting in anger and frustration is not going calm the issue, it will make it worse for both of you.

On the other hand, if you do react with anger, frustration or any other way that escalates the situation, don't beat yourself up. Some days, it all adds up and takes its toll or even one event is too much to deal with. Last time I checked, all caregivers were humans too. Just like the one with FTD, the caregivers have limits to what they can deal with at any particular time.  I am not going to go into things like the importance of respite care in this blog. The needs of the caregivers is a huge subject on its own that will have to wait until another blog entry.

This blog came about after a couple things happened to me today. Someone was telling me how I was saying the wrong things and not properly thinking about things before I said them. Duh! Why didn't I think of that? Another was questioning why I reacted to something the way I did. The totally honest answer of "I don't know" was apparently unacceptable. The scary part is that these same people claim to others that they FTD. To them, I would like to say that just because you know someone with FTD, have read a few articles or even live with someone who has the disease, it does not mean you understand what we are going through. Your life experiences are interesting and I like to hear them but they just don't apply. I truly appreciate your effort to understand but, please, do not try to tell me, after the fact, what I should do or how I should react to things. There is no way for you to give me back my filters. I wish you could.

How My FTD Brain Fails Me

It's not been a good week for me, at least FTD-wise. It is common for FTD symptoms to worsen. Sometimes the change happens quickly, sometimes slowly. My speech difficulties seem to occur in spurts. It will plateau, then noticeably worsen then level off again for a while, sometimes even for weeks or a couple months.  A week or so ago, it definitely took a step down. I have been stuttering and have been unable to come up with words much more severely than it had been. I eventually get my thoughts out as long as the person I am talking to has enough patience to listen.

Also, this week, I  kept experiencing pain in my right hip. The pain was not severe, but it reminded me every so often that it was not happy. I could not remember anything happening that could have caused the pain, nothing at all. Then this morning, I went outside to talk to my friend who had brought some mulch over to spread out for me. The longer I tried to talk to him, my speech got worse and I got more and more angry at FTD. It wasn't long until I stomped my right foot in sheer frustration. This cycle of speech problems and stomping my foot continued the longer we talked. If there ever was an ah-ha moment, this was it. I'll bet my friend even saw the light bulb click on. This was why my hip was hurting. Every time I got frustrated with my worsening speech, I was spreading the irritation straight to the hip! All this without knowing I was doing it.

Even though I am now aware I am doing it, it is not going stop me from stomping that foot. FTD does not allow me to reprogram my brain. In addition, the frustration seems to need to find a way out.

Another incident happened earlier this week. I had a huge meltdown. It totally ruined the day for both my husband/care giver and me. To be honest, I do not even remember at all what triggered it. My husband was there so it was probably me getting frustrated because he was ignoring what I was saying or I felt he was just not listening to me. I must break for a second to tell you something that I find funny.

After several years of many people haranguing him, my husband actually got hearing aids. Some of the amusing things about it is how he keeps turning down the television, complaining that my sneakers are squeaking on the kitchen floor or asking things like "Are the birds always singing so loudly?" Now, I finally have the answer to the claim that men have "selective hearing." He now hears everything... except me talking.

Now, back to my meltdown. My speech problems always escalate when I have become upset or frustrated. Sometimes my balance and walking worsens as well. This day, however, the effects were much more pronounced than usual. I could barely get any words out. I would get stuck on the first syllable of a word for minutes at a time or just was unable to come up with any of the words I needed. That isn't so unusual, but it was much worse than it usually is. In addition, my head kept making small movements, almost as if I were shaking my head "no." Then, my right leg started twitching. The closest I can describe how it felt was that it seems as if electrical pulses were zapping down my leg every minute or two. It frightened me and frightened my husband perhaps even more. It was probably a good thing that I had seated myself before it escalated to the point my leg was involved. Once I calmed down, the symptoms eased. The speech difficulties stayed, but the twitching stopped. I was totally exhausted when the twitching had stopped.

I sure hope that these symptoms do not start becoming regular for me, progressing just like my speech and movement issues have progressed over the past few years. It would be easy to shove the incident aside since it happened when I was having a meltdown. The problem with this is that the meltdowns are caused by FTD. Things, that used to just irritate me a bit, but I was able to accept or ignore them, and they would not become huge issues.

My FTD brain is so occupied with trying to just deal with daily life that there seems to be no leeway on dealing with anything that involves emotions. If we go back to some of the earliest symptoms of FTD, we get "changes in behavior," "showing poor judgement," "no consideration of the feelings of others," and the biggie "no filter between thoughts and speech or impulse control resulting in offending others."  Yep, these symptoms were all involved that day. I said whatever thoughts came to me, disregarding whether the words would hurt my husband or not. The more he tried to not react adversely came across in my brain as though he did not care or was not interested in what I had to say. The anger and frustrations just kept feeding off each other, leading to the severe symptoms.

Could I have prevented this from escalating the way it did. The answer is a big, fat, NO! I was not capable of stopping it. I kind of remember realizing I was over reacting but even that would not stop what was happening or even slow it down. Did my husband respond in the best way possible? Probably not. He just kept telling me to calm down and to stop. It might have been better if, along with telling me to calm down, tell me that we can work it out or talk it out together and that he is there for me. Maybe, maybe not. On the other hand, if I had someone screaming and acting with so much anger, I would not known how to deal with it either.

I wish I could say that this incident was something that does not happen often. I wish I could say that it will never happen again. I wish I could say that I will work on preventing it from happening. With FTD, it's impossible for any of these statements to be true. The dead and dying brain cells can't do it. The cells cannot repair themselves or regrow. The effects of these dying cells depend on which part of the brain is involved.

The frontal region of the brain is what controls social behaviors and emotional behaviors. It is the part of the brain that tells us it is not appropriate to talk back to the pastor during his sermon. Yes, I did do that.  It is also the part of the brain that tells you not to stick your finger in a pot of nearly boiling water to determine if it was hot yet. Yep, I did that one too.  When the frontal lobe is damaged, we tend to focus on unimportant things or details and not recognize the important ones. The frontal lobes also affect our language skills, including finding the right words. They also affect motor function.

Obviously, the frontal region of the brain is the "fronto" part of Frontotemporal Degeneration. It's not difficult at all to determine that it was the front of brain that failed me that day.