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.
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