This was the first post I wrote about my wife, the disease and me, mostly me. After joinging and browsing several of the FTD specific groups and the non-FTD Dementia support groups, I decided to confine my posting for the most part to the PPA Support Group because they members seemed to have the most in common with me.
I had no idea what to expect and only gradually came to the realization that having one of these diseases is like a big ball rolling down a mountain in the dark – no one can predict the rolls and bounces and shocks and the only clear understanding is that we are heading down.
I am lucky in that I live relatively close to Washington, DC, the Nation’s Capitol, where all our Congressman and Senators work and so there is naturally a higher rate of central nervous system disorders.
There is an FTD support group run by the MD Alzheimer’s Association North of Baltimore, a second support group associated with the AFTD in suburban MD and a group specifically for PPA Speech and Language and Pastoral Counseling Depts of Loyola U in Columbia where I live..
The group in suburban MD, although incredibly well run, meets in a facility fairly close to the Washington Beltway and getting there is a very, very tough slog through rush hour traffic. The other group sponsored by the Alzheimer’s Association is about 35 tough miles the other direction through traffic and the middle of the day – which is difficult for me.
So, even knowing that the Loyola group had an emphasis on support and information for the speech difficulties, I chose to attend there since it was so very close and convenient. (Yes, I am a lazy slug and often late.)
I went to the Loyola group a couple of times, thinking, expecting that this group wouldn’t be for me. My wife’s problems are much more than speech and my problem was not needing a technical solution to a communications problem.
My problem was that I was just hurting, full of anger, frustration, sorrow, sadness – in fact full of every negative emotion you can name but hate.
What happened was that I found that what I needed was not to pour out my troubles in front of people and have a group hug, what I needed was just to be, for just a couple of hours, in the company of nice, caring people who had some idea what was going on.
This group includes the partners with PPA and the caregivers and they run the gamut from personalities that I probably wouldn’t pick as my only best friend on a desert island to people I really, really liked and respected. And the majority were way over on the “like’ side.
Just as important – or perhaps even more so– the sponsors, the faculty members, were good in every way you could ask for – professional, intelligent, thoughtful, supportive and so obviously interested in the welfare of the group members that I would continue to go to the meetings just to support their efforts.
But something enlightening happened there that I want to tell you about. In the meeting, I was telling a bit about my wife’s medical history and how in retrospect, I could see the degeneration in memory and decision making becoming obvious much before the speech issues and the eventual diagnosis.
Immediately several of the other caregivers responded that their loved ones only had language issues and none of the other memory of memory or behavior issues. A couple went on individually to emphasize that their doctor had said that it was PPA – ‘and that’s only language.’ The implication was that they were certainly not expecting anything beyond the communication issues.
For a minute I thought about arguing about the plausibility of degeneration staying in one narrowly circumscribed spot in the tofu-like brain matter, but decided not to.
Whatever the reason, let them hold onto their belief that language problems are as bad as it gets as long as they can.
Time will give them an answer.