I Am the "Perfect Storm"

When I write a blog, I usually wait to post it until the next day so that I can do one more edit. I did that yesterday and this morning, I edited it right out of there. I was writing it from the prospective of a caregiver. This morning I realized that mostly all of us already know everything I had written. The caregiver role sucks, nearly as much as having the disease sucks. Especially when you are doing both.

Do you remember the book and movie The Perfect Storm?  I don't remember the details of how three weather events collided and caused this horrible storm which was misnamed as the "perfect" storm. I only remember how horrific it became.

I realized that I am a perfect storm. The combination of my bvFTD, my role as caregiver for my husband with Alzheimer's Disease and, finally, my constant pain from bilateral Occipital Neuralgia all created it. I say it is a perfect storm because it has turned me into a horrible terror.  Actually, I would say a royal b*tch, but that just seems rude, although a perfect description.

My patience level is about non-existent and what little I have is devoted to caring for my husband. In actuality, for some reason, I have been blessed lately with a lot more patience and understanding with my husband. He has been so confused lately about whether this is our house and if we are allowed to live here and if he is married to me. He keeps holding his wedding ring up to mine and asking me if that means we are married and that we can continue to be married. When I realize he is confused about simple things like this, it is no wonder he is confused by the remote control, folding his towel and so much more. It is a mixed blessing when, after hearing that we can remain married, he asks how he gets rid of the other three women he is married so he can keep me as his wife as he likes me best. It warms my heart all the while it saddens me that he is so confused.

I do seem to need all my stores of patience and energy for him and there is nothing left for anything or anyone else. I have had no tolerance for other people or anything that happens out of the ordinary day. It is a wonder that anyone wants to deal with me at all. At least I recognize what I am doing and find myself apologizing quite often, but it is a difficult thing for others to accept. 

Very few people, except for those of us with the disease, can understand how difficult our lives now are. It is so difficult to accomplish much of anything because it takes our total focus on every little thing as we go about every day life. Often, we cannot even see to the end of a single small task, we have to take it one tiny part of the task at a time or we would not be able to do anything at all.

Caregiving is certainly extremely difficult as well. You have to keep the person with FTD in mind with everything you do. Going about what used to be simple chores and errands are compounded in difficulty when you have to worry about someone else's safety and comfort. It can be totally exhausting to get through some days.

Chronic pain is another thing that many people deal with everyday. It takes a huge toll on your body and your brain. It makes us have to overcompensate constantly to try to block out the pain and continue to allow us to function. Many, many times, it is just impossible to do this and trying to push through is simply self-defeating. It is exhausting, yes, but at least for me, it is also infuriating at this time when I need more energy and concentration to deal with my disease as well as my husband's. All too often, I get to the point when the excruciating pain seems to block out all other brain function. Neither the brain nor the body cooperate when it reaches that point because both are exhausted. Fortunately, it doesn't reach this extreme for me until 5 or 6:00 in the evening so I do continue to be able to push through the day until then.

Just as it is frustrating that seemingly no one else can understand the toll that FTD takes on us and limits everything we can do, the chronic pain does the same thing. With the exhaustion and brain fog of chronic pain it becomes difficult to exist through the day. The most unfortunate part is that no one else can see it. 

When I snap out rude words or roll my eyes at something I perceive to be wrong or a waste of time, I come across as being a rude, obnoxious b*tch. After the fact, I often recognize that I said inappropriate things and often apologize to those I feel I may have offended. Only a few are able to understand and forgive. Those would be the people who know that this is not my normal self and those who experience similar reactions due to the things they are coping with.

FTD, caregiver exhaustion and chronic pain don't always show on people's faces. They are also things that I, and I believe others experiencing it, do not talk about because they know two things: most of us are busy dealing with our own crap and/or they wouldn't know what to do anyway. Add in the ones who think you are faking, are trying to get attention or, God forbid, you are "just depressed" and you give up trying.

I don't think it is the responsibility of others to try to figure out what I am dealing with in order to understand my behavior. Anyone dealing with any aspect of FTD has their own set of circumstances to cope with to be worrying about mine. I do wish, though, that people would notice the dark circles under my eyes, recognize the fake smiles I have on my face and the way my head will jerk forward from shooting pain that feels like an electrified nail is being driven into my head. 

If I have offended any one of you, I do sincerely apologize and beg you to understand that it is not the "real" me you are witnessing. Hopefully the doctors will soon find some way to relieve the Occipital Neuralgia. Just eliminating that one part of my perfect storm will hopefully bring me back to a better and kinder state of mind.

As I have often said, I do not know which role is worse, that of someone with dementia, or someone who is caring for someone with dementia. They each bring many different frustrations but in experiencing both roles, I really can not say which is worse. They both just plain suck, especially when you are doing both while dealing with this horrible chronic pain.

The neurologist told me that only 3 in 100,000 people experience the type of occipital neuralgia I am have. Add in the slim odds of developing FTD and it is no wonder I cannot win the lottery. All my chances of beating the odds were used up with my health issues. Then again, they tell me I need to remember to buy a ticket before I can win.  

Twisted Sensations in the FTD Brain

How in the world can a gentle touch feel like pain? This is a question that has come to my mind many time. At times, if someone touches me, even a gentle touch, I somehow feel pain instead of the gentle touch that the person is intending to transmit to me.

I just spent two days researching this subject on the internet. I am amazed at how complicated our sense of touch is. I will try to simplify it from all that I read. Touch stimulates sensors in the deepest layer of our skin, the dermis. This layer of skin is loaded with a huge number of nerve endings. These nerve endings transport the feelings from touch, whether pleasant or painful touch, are converted into electrical signals. The signals then travel through the spinal column to the brain. 

One type of pain is called Neuropathic Pain which is caused by abnormalities in this system. The problem can be in the nerves, the spinal cord or the brain. Neuropathic Pain can cause people to feel pain from a stimulus that is not normally painful, such as a light touch or cold temperature. Pain in different areas of the body are sensed in different parts of the brain.

I was not able to find any information about this in any specific way to link it to FTD. However, if the touch/pain signal goes through our brain and that part of our brain is damaged by FTD, it leads to believing how it can be misinterpreted. It would also explain why some of us experience this misinterpretation of touch and others don't. FTD attacks different parts of the brain, in differing order, for each one of us, as we all know.

Another cause can be sensory overload. When we experience this, everything can become painful. I often feel like my entire body is being bitten by fire ants or being touched by stinging nettles when there is too much going on around me, changes in lighting or noise. I think all of us with FTD have experienced this and can understand why our brain will misinterpret a gentle touch as another assault on our bodies.

This also explains one of the reasons people with FTD and other dementias are reluctant to shower or bathe. The feeling of the water is not the same for many of us. The feeling of the water hitting us in the shower can overwhelm us and cause us to feel that we are being attacked. That is why some do better with a shower mounted at shoulder level or a handheld shower head. From what I have heard from others, it can cause feelings of pain no matter where it hits the body, but the head is worse. Personally, it is just getting hit in the face with water than bothers me. I have solved that by taking baths rather than showering.

Of course, the pain or fear of the water hitting the body is not the only reason many with FTD are reluctant to shower. A lot of it comes from our feelings of apathy. If you don't care about others, you may not notice or care that you smell bad or look dirty. On top of that, you don't care if it bothers anyone.

I never understood how bad this aversion to showering or bathing can be. When my husband's Alzheimer's Disease started to h progress rapidly, he developed this same aversion. I have tried all the regularly suggested steps to deal with it: a sturdy shower chair; a shower head that is mounted at shoulder level or can be removed to be handheld; a non-skid surface on the shower floor and a gentle shampoo that does not burn the eyes. I admit that I have even resorted to begging and bribing which has never worked for me. 

Now, I realize that if a simple touch on my skin can feel like pain, it certainly makes sense that the shower spray could do the same thing to him. I am still waiting for a magical answer. In the meantime, I am using waterless shampoo and antibacterial disposable wipes to stretch the time between showers. Even this is difficult for him to accept at some times. I should take a moment to tell you about the shampoo "gloves" that I found at CVS online. They are really mitts, not gloves, but they have a gel type product in them that releases as you rub the head. This is the one thing my husband responds well to. He says it is because it feels like I am massaging his head. I am not pushing you to try them, it is just one more item to try until you find something that works for you or your loved one.

I hope I have succeeded in explaining this complicated issue of senses of touch being misinterpreted in an FTD brain. Some days it seems like everything can be affected by FTD. That is one of the reasons it is such a difficult disease to deal with... whether it is the one with the disease or the caregiver. In the meantime, if you see me, please don't touch me!

Oh, So Frustrating...

I do not think it is possible for anyone who does not have FTD to understand the frustrations we deal with. It all begins when you realize, or someone else tells you, of the symptoms you are having. Most of your friends and family will say, "Oh, come on, there is nothing wrong with you. I do that too!"  Then, when you finally make that doctor's appointment, the doctor often dismisses your complaints, orders an anti-depressant or refers you to a neurologist.

I cannot begin to tell you of how many people with FTD were put through batteries of testing by neurologists, only to say the same things or blame it on depression. If not depression and they understand dementia, most will diagnose Alzheimer's Disease. The first action most of them take, at this point, is to hand you a prescription designed to treat Alzheimer's. (Aricept, Namenda, Exelon, Galantamine) That would be great if these meds improved FTD, but they usually do not and, in fact, they often worsen FTD.

By the time many of us are diagnosed, we are much further along in the FTD progression and have dealt with a lot of stress in trying to locate a neurologist who actually does know FTD.

I know I have ranted about this subjects many times, but it struck me again this week. I have been having brutal headaches in the back of my head, nearly constant.  This headache is similar to an FTD headache in the fact that it is extremely painful and nothing relieves the pain. I knew the area was in the area of the occipital lobe and I knew I was scheduled to see my retina specialist soon, I waited. I told him about the pain and he asked me to show him where it was. He responded that I had shown him the area of the occipital lobe. Gee, why didn't I think of that! That was the end of the conversation. I was so frustrated because this man is a brilliant retina specialist and has been saving my vision for nearly 30 years. Because of our history, I do not hold this against him.

My next step was to break down and call my family doctor. She reacted immediately and ordered an MRI and carotid artery scans. When these provided no answer, she referred me to a neurologist. I really do not like neurologists after being misdiagnosed by three of them here in town. I did agree to see a fairly new one who is much younger, so I thought she should have learned about FTD in med school. I had to wait over three weeks for an appointment with her, even though I begged them, explaining how much pain I was in.

Finally, at the appointment, where I told her I had FTD, she immediately said "Are you on the dementia drugs?" No, I am not, they are contra-indicated for FTD. "So, you aren't taking them?" No, not only are they contra-indicated, they often worsen FTD. "Oh."  About five minutes later, "Would you consider taking the dementia drugs?" The frustration came out and I growled out "I refuse to take a medication that might worsen my dementia." Fortunately my sister was in the exam room with me. She took hold of my arm and whispered "It's okay." So I was able to proceed.

Then the doctor asked about my double vision since I had noted that as one of my symptoms. "Have you tried prisms?" What? (With her accent, I had difficulty understand the word.) "Sometimes at the eye doctor they will put prisms in your glasses and that fixes it." No, that would not work because the problem is in the brain. It is unable to bring together the images that each eye sees. "Will you try them?" Okay, I lost it again. I asked her, in a questioning, and probably sarcastic, tone of voice, "Do they make prisms for the brain? I didn't know that." Again, my sister had to calm me down before I was asked to leave.

She did give me a diagnosis of bilateral Occipital Neuralgia. That basically means pain in the head, which is a shade better than pain in the butt which we already know I am! She referred me to the only doctor in our area who gives the needed injections into the occipital nerves as a nerve block. It was either that or adding yet another medication that may or may not work and may or may not conflict with other meds I take. That had been her answer when I asked if the would. Even though I do not look forward to getting injections that close to the brain, I chose that option. She said she would send the referral and the pain management office would call me to make an appointment.

I did not hear for 2 1/2 days, so I called the pain management center. Yes, they had the referral. No, they could not give me an appointment until I filled out the packet of forms that they had mailed to me on that day and I sent them back. I have not received these as of yet which means until I get them filled out and delivered back to them it will be yet another week. I know how busy this doctor is because we had to wait weeks to get a spinal tap done on my husband a few years ago. I also know how good he is and I feel safe putting myself in his hands.

Bottom line, by time I get the nerve blocks, I will have suffered through this horrible pain for at least two months. No medication touches the pain and it is debilitating most of the time.  This is only one event in my nearly eight years since I first noticed symptoms of dementia. Experiences like this are fairly common for those of us with FTD and is just one in a long list of frustrating experiences I have had to deal with and I am not alone.

I won't go into detail about many other frustrations we must cope with: The inability to do things that we could do before FTD, things that we used to enjoy. The times when our body fails us and we fall or stumble into things. The times our loved one or caregiver criticizes us or refuses to believe that we truly cannot do something they are expecting us to do. The number of friends and/or family members who now ignore us. Obviously, this list is but a tiny few of the frustrations we deal with constantly and that worsen as our disease progresses.

Whatever you do, please, please, please do not tell us "Oh, you look fine" or "You are too young to have dementia."  I am at the point of frustration where I just might kick the next person who says it to me! 

I Am Finally Writing Again

I apologize for being missing in action for the past few weeks. I was having enough trouble getting through the days that I could not think beyond that. Why? A new symptom, of course. More about that later.

There have been a few things I have read about this past months while being MIA. I read an article about CBD oil, Many of us are using this oil to treat various things with our FTD, primarily stress. While they acknowledged that it probably helps with stress, CBD oil can interfere with prescription medicines. The most serious reactions are those medications for the heart and blood pressure.

So, please, like any over-the-counter medications or supplements, make sure you inform your doctor you are using CBD oil. Ideally, please discuss it before you start using the oil, especially if you are on any medication for heart and/or blood pressure issues.

Also, a friend who also has FTD, found an article that was extremely interesting to me. I think it is one of the best stories and explanation about FTD that I have ever seen. So, I am sharing the link to it. Please take time to read it. I might be one you will want to share with others to help them understand just what we are dealing with.

https://l.facebook.com/l.php?u=https%3A%2F%2Ftheconversation.com%2Fexplainer-how-is-frontotemporal-dementia-different-and-what-are-the-warning-signs-95436%3Ffbclid%3DIwAR3edcGbGfz3fyGNMv3JvGiP5Ya_gyYqI9Jn90l9jQMbw2T9lwLWZDpH8xs&h=AT0eewj6fVacY6zZxEilg1G8-2OPO3LFsLTiO0R-IC1882OafUvs1ObCiWdPdcTPUSfvxC5gnQwYCI8A39pbjSSh_RRMfPslkk4rWhMlnCe6LtgzDFJg12Y

Another important bit of info: The AFTD 2019 Educational Conference will be coming up in May. It is being held in Los Angeles, California. Registration will begin on January 11, 2019 and more information can be found on the AFTD website:  www.theAFTD.org

I must share that I finally found the secret to making my holidays more survivable. My daughter was home for the entire Christmas week which helped immeasurably. We limited all visits to five people or less, including ourselves. I still, with her help, prepared our traditional Christmas morning brunch. All other meals were purchased and required very little effort to prepare. Not to give free advertising, but we went to Honey Baked Ham for ham and turkey, as well as all the sides needed to make wonderful dinners for Christmas Eve and Christmas Day. I also only baked only about twelve dozen cookies in the two weeks leading up to the holiday, giving up on the 100-200 dozen I usually would do. I will admit several people showed disappointment when they did not receive cookie trays, but having FTD, there have to be limits put on to what I try to do. To not be totally out of commission for a week or more after the holidays is the best gift of all. My solutions may not have worked for everyone else, but there are ways to cut back and enjoy the holidays.

Now, back to why you have not seen any blog entries from me for the past few weeks:

I have written many times about "FTD headaches" and how debilitating they can be. I thought there could be no headache more painful than those, until now. I have developed a new kind of headache in the back of my head. I was at an appointment with my retinal specialist and when he asked where the headaches were, I showed him an area on the back of my head. His response was "You just showed me the entire area of your Occipital Lobe."

I was desperate enough for relief that I visited my family doctor. Of course, an MRI was ordered which showed nothing, not even my FTD!  How frustrating is that? A SPECT scan in 2011 clearly showed FTD, and they still see nothing on an MRI? No wonder we are so often misdiagnosed. I cannot help but wonder if there is actually nothing that shows on the MRI or if the diagnostician does not know what to look for with FTD?

Trying to figure out what was going on, my doctor gave up and insisted that I consult with a neurologist. I do not like them, Sam I am. I would rather eat green eggs and ham! I have this fear that when I see the neurologist (one whom I have not seen before) next week, she will say "There is nothing wrong, it must just be depression."  This is what I heard from other neurologists in the same practice back when I first knew something is wrong.

My sister asked if I wanted her to accompany me to the appointment. At first, I said 'No." Then I quickly changed my mind. I knew I needed to take her with me because if the doctor even started to say there was nothing wrong, I would not be able to control my reactions and have no idea what I might say or do. So, please think positive thoughts for me this week... not just for an answer and some relief, but that I don't end up locked up for assaulting a doctor.

I will make no absolutely promises, but I will attempt to get back to writing on a more regular schedule. I hope at least some people missed me rather than saying "Geez, I'm glad she stopped writing."