Well, I knew this day would come eventually. I just didn't think it would be in my early 50's!

I've been diagnosed with this disease eight years now. I know I've had it for much longer than that.

Family and friends who know that I was dx'ed in 2005 seem to feel that I've progressed quickly. I don't feel that way because I've experienced symptoms for a long, long time. Just because they can't see the disease doesn't mean it wasn't plowing away at me for years before the official dx.

I do feel old. I feel like I've aged rapidly since my diagnosis. I've slowed down to the point of being sedentary.

It just takes too much energy to do even the smallest task. I have to weigh the satisfaction of completing a task with the energy it's going to take to do it before I can even decide whether or not to attempt it!

Just going out for lunch or dinner has become almost more effort than it's worth. I just don't enjoy it anymore.

Between the anxiety it causes because I have to venture into unknown territory.....are there stairs.....are there bathrooms close by and can I navigate my way to them quickly.....will my spasticity in my legs prevent me from walking after sitting for a while.....will I be able to eat without it looking like a 2 year old was sitting there......can I have iced tea or water with my meal without worrying about getting to the potty in time.....just so many things to consider that it makes me just want to say "forget it"! It's just not worth the effort.

Before anyone comes to the conclusion that I'm depressed....I'm not! I just miss the things I used to be able to do. I do get enjoyment from other things. And I'm happy my kids and others are able to do the things I'm now not able to do. I still enjoy hearing about them. But I do miss being able to join them in doing these things. Does that make any sense?

I guess I'm just feeling "old" before my time. I don't like being so dependent on others for so many things. But I'm thankful I have those people in my life that I know I can depend on.

I feel guilty for my kids even though they are adults and have turned out beautifully. They've experienced more loss in their short lives than some folks experience in a lifetime......and I just feel like my disease is one more thing they have to deal with. Hey, guilt and being a Mom go hand in hand. We all just want everything to go smoothly for our kids.

I know others must feel some of the same things as I do.

Edit to add: I think I know why I'm feeling so nostalgic......today would have been our Wedding Anniversary and the 9th will be the 12th anniversary of my DH's passing.

I get it- just yesterday two good friends picked me up for a day of fun & laughs. I had been looking forward to this all week long. We were out about 2 hours (ran one quick errand, then stopped to have lunch).

I finally had to ask to be taken home as I needed a bigtime nap. I felt like a failure and was mad as hell for my body & brain quitting on me. I hope they don't give up on me - even if I can't "hang with the big boys"

*my love and hugs on your anniversary and your husband's passing. Certain can be a mixed bag of emotions

(((((Kelly)))))

It's too early for me to be welcoming you to my club.. We don't
have a say in when the darn disease is gonna get the best of us
or when it's too late to "deny" it, anymore.

I'm 20 yrs older than you and I still don't like to admit I'm an
OTD PWMS. I think young and think I always will, or perhaps
I'm in my 2nd childhood.

Try to be happy and content with what you are able to do now
and try not to dwell on the things you have trouble doing. Have
one day a week, when you have something to which to look forward.

I look forward to my Sundays, when DD & Grands come to bring
my groceries and stay for a little visit. Everyone knows that,
they all must come to my home, since I don't drive and am
limited as to going out. Make a plan.

Love yourself, be happy and come here to whine, as often
as you like.

Kitty, I had read about halfway through the post and had to check the avatar to see whether you wrote it or I had.

Yes, it's my story too. I can't go to church this morning as I was awake with neuropathy most of the night, and I can hardly walk this morning. And I too am missing my husband who died 4 l/2 years ago. My son and his family never come here. I have to go there if I want to see them. That may change. I am not sure my son and his family will come here at all. My neighbor had not seen me come out of the house in a couple of months and she was wondering if I was dead...when I did finally take a walk yesterday, past her house, when the sun was hiding behind rainclouds (blessed rain will help the fires here in New Mexico). But my neighbor never came over to see if I was dead. People have their lives.
Of course I am much older than you are, but when I was your age I was very sick and finally in the process of dx, even though I had had symptoms since age 17. Finally I had an MRI, finally a dx, as my symptoms, especially the ON, had become worse. I had some very bad attacks in my thirties and forties which were not diagnosed.
Praying for you and for some joy to enter your lives, and for blessings to all, Kitty and all who have written on this thread.

Kelly, when you mentioned your DH, it
reminded me that SSon's 50th birthday is
today and how much he looks like his Dad.


..Son @ 50..... DH @ 53

My sincere condolences, on the anniversary of your DH's death.

I don't come here much, just to read, but a couple of days ago I was wondering the same thing about age. I'm 66, was dx. 18 years ago and feel like I'm going down hill. I can't even think like I am suppose to, so much more forgetfull, don't walk as well as I did and now I am having trouble dribbling out of the R. side of my mouth. I was paralyzed on the R. side in the beginning and was not able to get everything back, so I wonder, is it progressing or age and I can't do anything about either one. But, glad to be alive, read Sally's post and it gave me incouragement so back today reading it again. I have to remind myself all the time, God is always with me and to take one day at a time.