Something wonderful happened this past week. I received an invitation to join an online support group for patients who have a confirmed diagnosis of FTD... no caregivers, no Alzheimer's patients. Not that we don't like either of these groups. We would have a much more difficult life with no caregivers and we certainly understand that Alzheimer's patients have a lot to deal with as well, but it is not the same as FTD. Unfortunately, many support groups, research programs and information get lumped together as Alzheimer's and other dementias. Great for Alzheimer's, not so great for us "others."
The support group is great in that it is a closed and "secret" group. No one who is not a member of the group can see any of the posts. That makes it a comfortable and safe place to talk. It has been eye opening to me. I have discovered that some of my nagging little problems are actually part of the disease. I have discovered that there are many others who experience the same social issues. Can you imagine what a relief this is? Maybe not, but there is something wonderful about not being "the only one" experiencing things. I don't feel so alone in it now.
Another good thing that happened this week is that there is news that the Mayo Clinic has been given $6 million dollars to research FTD's. Just FTD's, not Alzheimer's and FTD's. I imagine that amount of money won't go very far into research, but it is a good positive step. More education about FTD's has got to get out there. I often wonder how many more patients there are that do not get diagnosed because even doctors don't know enough about the diseases. It's pretty frustrating when you have to take a publication on the subject with you when you go to a new doctor to educate on the subject. It seems to me that they should already know and be able to teach the patients about it, instead of the other way around.
I also, just this week, came to realize just how much I appreciate my sister. Not that I didn't before, it's just different now. She is always there and ready to help me out. Often times, it's just getting me out of the house and enable me to do some of the things my husband has no interest in doing. Even if it is just shopping or going out for lunch. I can also talk to her and tell her "This is not helping me!" I am so very thankful that she moved back to this area a year and a half ago. She makes a big difference in my life. I actually called her and told her this a few days ago. Yes, a few tears were shed... happy tears!
All was not sunny and bright this week, but I got through it all. A little frustration here, a lot of frustration there, and while it does seem to be taking me longer to recover from stressful and frustrating events, I still can and that IS good.
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