Sunday, November 30, 2014

Please Excuse My Whining

Ahhh... another week, another frustration of someone I care about not believing there is anything wrong with me. I cannot begin to explain how great this frustration is. Here I am, trapped in this brain that just won't cooperate with me, but because not everyone can see the symptoms, the disease doesn't exist.
I stumbled across a list of differences between Fronto Temporal Dementia and Alzheimer's Disease that might help others understand just a tad better. I wish I knew the source of  the excerpt because I suspect there might be more beneficial information there, so I will keep looking.  In the meantime:

Frontotemporal degeneration is not as rare as once thought; it is considered to be the second most common cause of early onset dementia. However, because of the wide range of symptoms and their gradual onset, FTD is often initially misdiagnosed as a psychiatric problem, Alzheimer’s disease, Parkinson’s disease or vascular dementia.
FTD vs. Alzheimer’s Disease
 *Both frontotemporal degeneration (FTD) and Alzheimer’s disease (AD) are characterized by atrophy of the brain, and a gradual, progressive loss of brain function. However, several important distinctions can help to differentiate between the two:
 *FTD is primarily a disease of behavior and language dysfunction, while the hallmark of Alzheimer’s disease is loss of memory.
 *FTD often begins earlier than AD with an average age of onset in the 50s and 60s, a full 10 years before the average Alzheimer’s patient is diagnosed.
  *FTD patients exhibit behavioral and personality changes (lack of concern for social norms or other people, lack of insight into their own behaviors), but may retain cardinal features of memory (keeping track of day-to-day events, orientation to space and time). AD patients display increasing memory deficits, but typically retain socially appropriate behavior.
 *Some FTD patients may have only language dysfunction (this is seen in the two types of progressive aphasia: semantic dementia and progressive non-fluent aphasia). And the pattern of language loss may be specific, such as an inability to name a familiar, everyday object. The language decline seen in AD patients involves a milder problem with recalling names and words.
 *FTD patients are more likely to display early motor abnormalities, such as difficulty walking, rigidity or tremor (similar to Parkinson disease), or muscle atrophy and weakness.

I will add a little more information to go with this. FTD does not present itself the same in each case. Most will have a combination of the symptoms listed or sometimes just one. Bear in mind, the list above does not cover all the possible symptoms, it is just pointing out some differences between the two diseases. 
For instance, at the risk of repeating information from previous posts, I was definitely in the average age span when first diagnosed. I definitely fall into the category of behavioral and personality changes. (One item not included in the above list in this category, is apathy or a flatness of emotions, feeling no empathy for others... totally a change from the person's previous personality.) I do struggle with speaking, more so when stressed or uncomfortable. I will struggle for the correct words, my speech pattern is slower and I stutter, which before was never an issue with me. I have difficulty operating things such as the microwave, stove and washing machine. A few months ago, I started having some motoring issues. My right leg just doesn't seem to get the messages from my brain and often drags when I am walking. I  have mentioned before that I have started falling more frequently and am beginning to have problems clearing my throat and sometimes with swallowing. Not to forget my first symptoms of constantly getting lost, even in familiar places, and the lack of impulse control. 
As I have said a few times before, I am still blessed with the ability to read and, obviously can still write. Writing is much easier than speaking, because if I can't think of the words, I can sit here until I do or try to come up with alternatives. I also have the opportunity to edit and there sure is not editing or filtering on what comes out of my mouth! 
All of this explains why people have trouble believing I have FTD. For starters, they love me and don't want me to have anything wrong with me or my brain. Secondly, most of them don't see me often and some see me rarely and our only communication is by phone and/or internet. It's pretty difficult to pick up on the symptoms that way. Well, except for the personality changes and the lack of a verbal filter on my mouth. These are people with whom I am most comfortable, so the speaking problems are at a very minimum when talking with them. In addition, most of them have have previously dealt with someone suffering from Alzheimer's Disease, and have trouble realizing the differences. So I do understand why they have trouble accepting or believing that there is something wrong with my brain. I suppose I should feel grateful that not everyone realizes how uncooperative my brain is, but the struggle continues. My frustration lies in that they don't recognize what I go through just to make it through the day and don't understand why I no longer paint or no longer volunteer the way I used to or why I am no longer active in my church. It hurts that they are perhaps thinking I have just become lazy and don't care anymore.
Well, I apologize for the length of this post and for the whining. Hopefully, despite that, my frustrations will open some eyes to the differences between the types of dementia and let the other sufferers know they aren't alone.


Sunday, November 23, 2014

Support Groups

I am learning just how important support groups are to those with FTD. This disease is so very much misunderstood. Even a lot of member in the medical community have no clue about what it is or what its effects are. All the neuro-psychological testing seems to be geared to Alzheimer's disease. The online support group that I have found is exclusively for those with a confirmed diagnosis of an FTD, I have learned more about my disease on this Facebook page than I have anywhere else.

I have learned that the headache that I can never get rid of is common among those with FTD, as well as sleep difficulties, balance issues and falling. I am somehow happy to know that I am not as bad as some with my anger issues and the immediate lashing out in anger. I have had trouble for the past year with not being able to clear my throat, and have been driving my loved ones crazy with the constant noises that I make trying to do so. I never even suspected it was part of FTD until I read about another sufferer who was experiencing even more trouble with clearing his throat, to the point of choking sometimes. It is relieving to know that I am not the only one who is driven crazy by noise and who is more sensitive to smells. The information is just not out there anywhere else that I have found!

I wish I lived in an area large enough to have more people with diagnosed FTD, only so that we could have a face-to-face support group. Of course, with the extreme difficulty I had getting a diagnosis locally, who knows how many are nearby who are being treated, incorrectly, for depression or bipolar depression and who knows what else, when they really have an FTD. I was one of the lucky ones who was able to get a diagnosis after travelling only 100 miles. Many have had to travel further. It is pathetic, in my opinion, that the local medical community is blind to FTD. I am so thankful that my family doctor kept encouraging me to seek a diagnosis. She knew me well enough to know the crap the local neurologists were spouting, how it was just depression with an amnesic factor, was not correct.

While having wonderful loved ones, who try their best to understand what I am living with, there is no way for them to truly understand. That is why I find it so very helpful and reassuring to be able to communicate with others who are dealing with the same disease. As I keep saying, Fronto-temporal Lobe Dementia is a whole different animal from Alzheimer's dementia. They are definitely relatives, but FTD is still the black sheep in the family.

I am also so very lucky to have found a private psychologist who specializes in treating those with dementia and who knows that FTD exists. She readily admits she doesn't know as much as she would like to about FTD, and appreciates the information I share with her. Despite knowing more about the more common dementias, such as Alzheimer's, she is knowledgeable enough to be able to recognize the differences and to come up with helpful ways for me to better deal with it. She has been such a huge help to me. I have cut back to seeing her just once every four weeks, which  is a good sign, I think. One of the best things she has me doing is breaking things down into smaller tasks and dealing with only one small task at a time. For instance, if I want to bake something, I focus on getting all the ingredients and equipment organized first. If that's all I can handle in one day, I leave it and do the actual baking the next day. I am also trying to keep my schedule less busy so that I can cope with a little more ease. By having smaller goals, I feel like a failure less often which is so important to keeping my spirits up.

I already have Thanksgiving broken down into small steps so that I am anticipating a successful family dinner. Then, who knows, maybe I will actually be able to do Christmas!  Wish me luck!

Sunday, November 16, 2014

This Disease Sucks!

This disease sucks! I don't know how to say it better than that.

My biggest medical fear has always been having a stroke. Cancer I dealt with. A heart attack would be bad, but most times allows for recovery. Having a stroke, and having my mind still be alert and active, but my body not able to cooperate? That has always frightened me. I remember, very well, a day, when my daughter was three years old. We were visiting the home of an older couple and the husband had suffered a pretty severe stroke. This man was brilliant. He was an architect and some of the buildings he designed were pretty amazing, in my opinion anyway. It was so sad to me that here he was trapped, unable to communicate well with even his wife. My daughter blew me away that day. She sat and interacted with this man for over an hour while we worked with his wife. When we were finally ready to leave and found her still with him, we realized that she was truly communicating with him. I finally understood it was because she was still in the mode of listening and learning, with no preconceived ideas of how things should be. She learned in that short period of time to adjust her thinking and listening to understand him. You cannot imagine how happy he was that day.

I tell you this story, not only because of how proud I was of my daughter that day, but because that fear I had of having a stroke doesn't compare to what an FTD patient experiences. Some days, we can not even figure out ourselves what our brain is telling us, so how do we explain it to others? People see us looking, physically, as we always have. We are even often able to communicate to the point that others refuse to believe there is anything wrong with us. I cannot seem to be able to explain what I am going through to those that are around me all the time and used to know me better than I know myself.

How can I explain to anyone else how my brain is working when I cannot understand it myself? I have been having a rough time the past three days. Today, I was proud of myself that I was even able to get out of bed this morning. I was feeling that incapable of coping with things that it seemed like a true accomplishment. I have written previously about how difficult the grocery store is for me to deal with and this is the day of the week that my husband prefers to do the shopping. It is an old habit from the days when I was still working and he was retired. Sunday just happened to be the most convenient time to do it, and in his mind, it still is. He records all the sports he wants to watch, we do the shopping then when we come home, he makes some snacks and sits down and watches all the sports. Usually he is ready to go about the time I have finished the Sunday paper. When I haven't, he doesn't complain, he just paces about and gets involved in all kinds of little busy tasks and makes it apparent how anxious he is to get going. I would bet that if asked, he would not recognize that he does this.

My getting ready to go, which used to be so simple and automatic, is now broken down into tiny processes, each requiring my full concentration. I must make sure I am dressed and groomed appropriately. I must sit down with the store's flyer and my stack of coupons, think of what we are short of and come up with a list. Shopping without a complete and detailed list is out of the question. I won't even get into the stress of the actual shopping. I have talked about that often enough now. I'll bet by now you are thinking "Wow, is she ever getting picky and complaining over nothing."

I don't know how to explain to you, and those in my life, how my brain works when I don't understand it myself. (I keep repeating that, don't I?) That's why I think of this little three-year-old understanding this older stroke victim. How do you get past people's preconceived notions enough that they can understand? Sometimes, I seem to be able to explain it with individual episodes and they realize why I reacted in a certain way (usually by lashing out), but they can't seem to "get it" all the time, before it gets to be too much for me to handle and I do lash out or break down.

My husband? Even though he cannot understand, he did eventually realize I couldn't handle shopping today and offered to go alone, and did a good job of it. God bless him for sticking with me!

The only people I have found who truly understand are the other unlucky FTD sufferers on my favorite online support group. They totally get it, because they are also living it. Guess what? They don't seem to be able to get anyone else to understand either. So, at least I am not alone. Maybe I should find some three year old children who can translate for me.

Sunday, November 9, 2014

Dealing with Setbacks

It's time to admit to a couple setbacks. I have been struggling with loss of balance and problems with staggering for about nine months now. I was shocked to  learn in the spring that this was probably due to my Fronto Temporal Lobe Dementia. I was learning to cope with it pretty well by using a walking stick while walking outside because our yard is on a hill and bumpy in places, by holding on to my husband or my sister's arm when walking in parking lots and leaning on a cart in stores that have them.

But this past week, I fell in the bedroom hallway. Problem with this is that there is an open stairway to the basement at the end of the hall. When we moved into this house, we removed the door to the basement to make it more open since it is a nice finished room down there.  I was very, very lucky when I fell. I was heading toward the stairway and would have gone down, but I twisted myself hard enough and in time so that I fell into the doorway of one of the bedrooms instead. I needed to go to the chiropractor for the twisted back, but going down the stairs would most likely have been much worse.

Now we have the door back at the top the stairway to the basement which will, hopefully, prevent falls down the stairs. I actually found out that falls down stairs, and the injuries caused by these falls, is one of the leading causes of death for FTD patients. It is inconvenient and not as pleasantly appealing to have the door there, but definitely gives me a greater sense of security.

Going right along with the falling issue, the stumbling when walking is getting noticeably worse as well.  I'm sure there are a lot of people who, when they see me out and about, assume I have been drinking. When the stumbling first started with me, I actually heard people behind me comment to that effect, sounding quite disgusted with me, and blew on by me on the sidewalk. Perhaps I should wear a t-shirt with a sign on the back "I'm not drunk, my brain just doesn't work." Well, maybe not...

I have been noticing a new element to the leg problem. It seems to me that the signal is not getting from my brain to my leg, if that makes any sense at all. I have noticed it a few times when climbing stairs. My right leg just doesn't get the idea what it is supposed to be doing. It has been of some help when I kind of push down on my thigh muscle to remind it to push in order to get up the step. A couple days ago, I had it act similarly when I was walking through a store with my sister. The right leg was forgetting to move itself forward. I had to totally focus on my walking, telling my leg to move forward and, again, pushing a little on the thigh muscle to remind it. Now I'll bet I didn't look stupid at all walking like that! At least it worked and I was able to walk out of the store.

Again this week, I am so thankful to be part of the online support group for FTD patients. When these new symptoms develop, I can quickly learn that I am not alone in experiencing them. I can also pick up some helpful tips on how to deal with the problems. We are quite a tight little community and are very supportive of each other. It is a shame that we are spread so far and wide and can't easily get together. I'll bet we could  help each other out a lot and have some good times together.

Sunday, November 2, 2014

Keeping It On the Sunny Side

I really work at trying to see the good most situations. I try to stay focused on the positive side, even in this blog. I figure that even if I am feeling down, it doesn't help if I bring everyone around me down as well. Sometimes this just does not work. It becomes a bad idea because no one knows how frustrated I've been for hours and they inadvertently add on one more stressful situation and it is the one that breaks me and I lash out at them. That is what happened one day this week.

I usually sleep later in the morning than my husband does. I experience a lot of nightmares, so it takes me longer to feel rested. One morning, he had to wake me early. We were needing some trees trimmed, especially around our power lines, and a gentleman who had done some work for us in previous years stopped by and offered to do it right then. The price was quite reasonable. If I had been fully awake, this would have been an easy conversation and an easy choice. My hesitation at giving an answer made him think I needed more information, so he kept giving me more and more. I finally snapped at him to just go ahead and do it. As the job went on, yet more decisions were necessary, building up my stress.

In the midst of the job, my sister stopped by for a visit. That was a good thing as I love her to visit so we sat down to talk over a cup of coffee, switching my focus to our conversation. After that, every question about the work required me to switch focus and resulted in my brain spinning in circles, upping my frustration level even more. I did try to keep myself calm, but I am sure that both my husband and sister could tell I was getting stressed but, hopefully, the guy doing the work didn't.

After everyone left, I began to tackle a chore I had assigned myself for that day. (Have I mentioned how many Post-It notes I use?)  Like any chore, it ended up being a bit more involved than expected, but I kept at it and was doing well. Then, my husband, who was feeling relieved by having the tree trimming done, was eager to get some other neglected chores done. He interupted and offered to help me with one but I said I wasn't ready to it. After a few minutes, he suggested another one. I totally lost it! It was just too many things to think about and too many necessary changes of focus, and I couldn't deal with it. He walked away from the situation to go calm down so he didn't also react in anger... God bless him!  I curled up on the floor and cried. Fortunately, I didn't take too long to calm myself this time. I went to where he was sitting and explained exactly how my meltdown had developed from the time I was awakened. It helps us both when we walk through it like that.

It is not easy for others to realize how difficult it is for someone with FTD to change focus, even over the little things. It ended up being a good moment of education for both of us, we ended up doing one of the chores he had suggested and the rest of the day was great! So there, I did find something good about it after all!