Thursday, March 31, 2016

Loneliness

I have decided that FTD is a lonely disease. So few people understand it. Certainly, as I have said enough times already, that even the doctors don't understand it. Those who do are few and far between. That rules out talking to most doctors. Plus with today's state of medicine, the docs don't have time to sit and talk anymore.

Family and friends say they understand. They should as I have explained the disease often enough and handed them enough literature to paper a small room, maybe even a large room. I know they get tired of hearing me talk about it and the frustrations involved with it. They listen and agree and sympathize. Even though it may sound demanding and selfish, I want their empathy, not sympathy.

Family and friends understand the facts of the disease and the concept of the symptoms. They certainly understand how my having the disease affects them. This includes the things that they now have to do because I no longer can. For instance, we needed to purchase a new washer a few years ago and I still cannot figure out how to operate it properly. My husband now does the laundry. I kept the home running smoothly. When there were problems or issues that cropped up, I got on the phone and resolved them. I even did simple home repairs. I did the grocery shopping by rote, didn't need to think about it. I just grabbed the list and went. Now, the grocery store is my least favorite place to go with too much noise, confusion and too many choices. So they understand that either they need to do the grocery shopping or give me a day to go through the ad and make the list, then a different day to do the shopping. Of course, someone must go with me as well.

So they understand the disease and how it is affecting them, but they cannot really understand how it affects me. They think that when I start to fall apart, if they say something or hold my hand, I should immediately get "over it" and calm down. I only wish it was that easy. It is this gap in their understanding that makes me feel lonely, that no one understands me so why bother trying to talk about it.

There is an online support group for those of us with a diagnosis of FTD. It helps, we exchange information and beg for suggestions and understanding when we are having problems. Even there, though, there is only so much it can help. I can't post all my everyday frustrations. They would get tired of reading about my problems which seem trivial to so many other things being posted, even to me. While this support group is a tremendous help, it doesn't really help the everyday loneliness.

I see a wonderful and supportive psychologist who helps me immensely. She specializes in dementia cases, so she understands me pretty well. Talking to her helps with the big things I am trying to work through, but there is only so much talking we can do since I only get to see her for one hour per month.

I was prompted to write about this loneliness because for the past three days, I have constantly felt close to tears. It feels like if I could just have a good cry, I could get it out and feel better. Unfortunately FTD and I don't do well expressing emotions, including being able to cry. There are a couple stressful situations happening in my life right now that are most likely contributing to this feeling of needing to cry. They are not even close to being tragedies or threatening to my well being. When they combine with the everyday frustrations of dealing with FTD, however, I don't stand much of a chance of feeling normal.

I don't have any answers or suggestions for you today, except maybe to the caregivers, friends and family. Try to stop and think about how the things that your loved one is doing that have you frustrated and try to think how they must be feeling before you react. Perhaps take some time to sit with them later, during a quiet time, and ask them about any frustrations they are having and if there is anything you can do to help.

Sunday, March 20, 2016

Routine please

Yesterday morning, while still lying in bed and convincing myself to get out of it, I heard a very loud bang. Even with FTD, I immediately knew what it was. A transformer had blown on the power pole a block away. This happens way too often, especially in the summer when the electric demand is high. Obviously, there is something wrong in the lines somewhere, but all they do is replace the parts on the pole and wait for it to happen again. What is the saying? Something like "Idiocy is doing the same thing over and over and expecting different results."

This time of year, it is not a horrible inconvenience to be without power for a few hours because it is not too cold outside and who won't accept a reason to not have to cook? I did all the right things. I turned up the ringer on the landline phone that does not need electricity... the one kids today would probably call an antique. I say it's not an antique unless you have to dial it! I put a note on the refrigerator so we wouldn't accidentally open it and let warm air in. I even dug out an LED light that runs on batteries so I could easily read the paper. The worst part was not being able to make a cup of coffee!

The power was back on after only three hours or so, no big deal. It was daylight and 50 degrees outside.  Still, I felt out of sorts all the rest of the day. It felt like wanting to crawl out of my own skin, anxiety and restlessness and a general feeling that something was wrong. It eventually drove me to bed early, just to try to relax and decompress.

With FTD, I need a routine. I was quite spontaneous prior to FTD, but no longer. I need to go to bed and get up around the same time each day. I want my coffee and newspaper as soon as I get up. On and on the day goes... right on schedule. It is soothing to me. If I am forced out of my routine, I get anxious. I finally figured out late last night that the loss of electricity had been enough to throw me off my routine.

This morning, when I awoke, I thought "Great, I can have a calm day today." I even remembered it was Sunday. What day of the week has been difficult for a while and is getting more so. I got up, got dressed, made my cup of coffee and sat down with the Sunday newspaper. I soon discovered several sections were missing. I tried to convince myself it was no big deal but it didn't work. I have my routine of how I go through the paper and that routine was messed up. Maybe it wouldn't have affected me as much if it hadn't been the day after another disrupted day.

I often advise caregivers to try to keep a routine. Also, try to prevent sudden loud noises. Loud music or a loud television affects my comfort level. Flashing or bright lights will destroy my day, give me a headache and increase my anxiety. After either one of these, I need to go into a quiet and dark room to regroup. If a trip out of the house is necessary, I want to know at least the day before so I can mentally prepare myself. If my routine is thrown off, I will most likely get a bad headache and become very aggravated and irritable... very unpleasant to be around.

So, here I sit at the computer, taking lots of breaks and sitting with my head in my hands trying to figure out what I am doing or what I am supposed to be doing. I have a strong feeling that I have forgotten something important. I am jumping at unexpected noises which just adds to the anxiety level. I sure hope tomorrow goes according to plan!



Sunday, March 6, 2016

Primary Progressive Aphasia... another type of FTD

Primary Progressive Aphasia (PPA). Have you ever heard of it? Until I started learning about FTD, I never had.

What is it? It is, basically, a progressive decline in the ability to speak. Today, I learned that it takes 100 different muscles, located between the lungs and lips, in order to speak. Speech therapy helps some people a bit and there are some experimental treatments out there being tested. One of which is sending electrical stimulation to the affected area of the brain that controls speech.

In the meantime, those with PPA can cope somewhat with speech devices. Those with just PPA can often still read and comprehend words and the meanings of them. They can manage their own lives, finances, etc. This enables many to be able to use speech assisting program and devices currently available. The majority requires the one with PPA to type in the words and the device will speak for them. Not a true substitute for speaking on their own, but at least a way of communicating.

Most often, PPA is considered to be under the umbrella of FTD. Just like FTD, it is not very well known. Unfortunately, even by physicians. Again, like FTD, PPA is often diagnosed as Early Onset Alzheimer's. Never  mind that the one with PPA can understand the words, they just can't speak them, and they often do not have memory issues.

There is a young woman in the online support group that I frequent who has PPA. Reading between the lines in what she posts, makes me realize that I cannot begin to imagine the frustrations of dealing with the disease. She amazes me, the way she keeps a positive attitude.  Sometimes the frustrations get the best of her, but she is still there to brighten someone else's day.

I am writing about PPA today because our local paper actually contained a story about the disease today. Of course, FTD was never mentioned, as usual. It did a pretty good job of describing PPA and the frustrations of dealing with it, along with hopes of some newer ways of coping with it that are in the works. They did a much better job of describing PPA than I have. Mine is more simplistic. In other words, broken down to the point that it makes sense to me.

I am very grateful that the newspaper printed the story so that I could get a better idea of what some of my online friends in our support group are dealing with every day.

It's been a while, if ever, that I have written about the exact form of FTD that I have been diagnosed with up to this point. The form that I have is bvFTD with MND. MND is Motor Neuron Disease. The closest way to describe this is that it is quite similar to ALS (Lou Gehrig's Disease). In fact, I have also seem some experts include ALS under the FTD umbrella since they are so similar. For me, it is like my muscles don't get the message from my brain. I will be walking and suddenly I trip, and often fall, because part of my brain is thinking that I am walking while at the same time, the signal from my brain to my muscles doesn't get there so my leg doesn't actually move. The most frustrating part, at the moment, is swallowing. The muscles necessary to cause me to swallow don't get the message. Both are worse when I am stressed or tired.

The bvFTD is Behavior Variant Fronto Temporal Lobe Dementia/Disease. That is where all the dangerous parts of FTD come in to play. Specifically, a lack of impulse control, loss of verbal filters, hyper-sexuality, outbursts of frustration and anger, impulse buying, repetitive activities and the list can go on and on. It becomes dangerous when I know I want to go across the road to get to our mailbox, but my brain doesn't remind me to look both ways. I almost got flattened by a coal truck one day.

My point I rambling toward is that if you know of someone diagnosed with FTD, then you meet someone else with the diagnosis, and you think it can't be because the symptoms of the two are totally different. Yep, it can be. The members of my support group like to say, "If you have seen one case of FTD, you have seen one case of FTD." No two are the same. Add in to that mix the fact that most medical personnel have never even heard of FTD, how likely is it that, with all the sub-types, this will be remedied very soon. That is why, any time I have the opportunity to talk about FTD to raise awareness, I do. I have also learned to go into any new doctor's office armed with literature to educate them about FTD. Some just look at it and toss it away, others seem sincerely interested and discuss it at the next visit. We need more doctors like that.