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!