FTD Is Never Ending

During this past week, a fellow FTD'er asked the question as to whether we just get sick and tired of FTD.  I never really thought of it that way before. I hope she does not mind me using her wise question as the theme of this blog. 

Short answer?  YES!  

How can you not get sick and tired of it. Number one, we have it and bravely deal with the symptoms everyday. Secondly, I at least, get tired of it occupying every minute, every second of every day. It never goes away. It does not get better. So we deal with it. Thirdly, I get so tired of having to explain the disease to everyone. It is usually an exercise in futility anyway, because I can almost hear them thinking "Oh, it must be Alzheimer's" or "but she doesn't look sick.)

Yes, we deal with the symptoms everyday as bravely as we can. Some days, I must admit, these symptoms defeat me and I am sure other FTD'ers as well. This is especially difficult when new symptoms appear.

This week, an old symptom came out to play. When I was first diagnosed, it was FTD w/MND (motor neuron disease, related to ALS). The decision to include MND with the diagnosis was made based on symptoms. I could not take more than a couple steps without stumbling. The way they tested it was to have me walk, in a straight line, down a hallway. There was a handrail along the wall and I had to grab on at least every three steps. There were other tests they did, but that one explained to me why other people, when following behind me, were assuming I was drunk. I was ready to make a sign for my back that said "I'm not drunk, I have FTD."

These symptoms never went away, but they never got noticeably worse either... until last week. I either lose my balance or one of my legs, usually the left one, does not get the message from the brain to move. I don't have a way to tell you how many aches and pains this is causing. My hips hurt, my calves hurt, my waist and abs hurt. These pains are being caused by me contorting myself to keep from falling. Yes, I know I should use a walker. It is just that using one in my home is awkward and almost as frustrating as falling. We have a narrow hallway and doorways. We also have very tight corners.

I guess this is an example, almost, of remission. Only in this case, not the disease, just the symptoms of another one. With these movement issues, it was really easy to ignore them. There is no way to ignore them now, especially when I am lying on the floor trying to get up. With my husband's Alzheimer's, he is of no help. I am trying to remember to keep my cell phone on me at all times. I must give a huge thanks to my daughter for "forcing" me to get a smart phone a couple months ago. It gives me security to know I can call for help if the need arises.

Now, for the second point of not being able to escape from it. For a couple years, I felt guilty because every time a caregiver would talk about getting or needing a "respite," I would feel angry and resentful. Calm down now, I am not saying that caregivers don't deserve/need a break from that role. It was simply like rubbing salt in a would because, it was possible, albeit quite difficult, for the caregivers to step away for a bit.  Those of us with FTD do not have any such option. There is no way to get away from the symptoms of the disease. They are always with us, making our lives difficult and sometimes painful, full of the frustration of being limited in what we can do and realizing that it will only get worse. I finally got over the feelings of anger and resentfulness, because with now being a caregiver as well, I couldn't get away anyway.

The other thing that does not go away is the realization that we are causing difficulties for everyone around us. Trust me, there is not one of us who wants to inconvenience their loved ones. None of us are happy that we are unable to work anymore and that we can get Social Security Disability payments. Trust me, those payments don't often come even close to what we were previously able to earn. There is also the stigma of being fired for many of us. There is no question that FTD affects those with higher intelligence more often than not. Therefore, most of us were making a pretty decent income. After FTD we sit around feeling useless because we cannot financially contribute or, in many cases, cannot even do chores to absorb some of that burden.

This fact is also difficult for the caregivers. Here they are, exhausted, maybe even already worked a full day at their job, then need to come home and do everything else... cook, clean, laundry, taking out the trash. You know, all those thankless jobs. On the other hand, we FTD'ers have to sit there and watch the caregivers wear themselves out and yet we still have to ask even more things of them.

I don't have to even talk about the third thing that I am so tired of dealing with. I don't think there is anyone reading my blog that does not understand this one. How many times have each of us been asked "what is FTD"? I find myself shaking my head before I start to explain because I know, 9 out of 10 of them are going to shake their head and walk away thinking either "they don't have dementia or they wouldn't be able to know they have it" or "they don't look sick."

I was chatting on Facebook with an old friend (we have been friends for 50 years) and Facebook has allowed us to get in touch once more. I asked him if he had seen the "Sixty Minutes" piece on FTD. He had not, so I sent him the links. I knew he had watched all three segments when a friend asked, as a reply to one of our posts about it, "What is FTD?" My friend typed, "It is a form of dementia, the worst kind." He got it! If only others would take the time and effort to even just Google FTD. I get very tired of trying to explain it to people who have no clue.

So, in answer to my friend's question, YES, I do get tired of FTD and all the energy to deal with it, explaining it and coping with the symptoms.  I will admit that I even get tired of advocating for the disease, but I will never stop. I will also not stop all of those things I mentioned, especially educating others. It is something that needs to be done. It is also something that rewards me by being able to feel useful and feeling that I just might be helping others. (Not looking for complements, it is just the truth."