Anyone dealing with muscular dystrophy?

[pnwmom]

A twenty-something niece just got diagnosed with FSHD.

[libodem]

1. That is a sad diagnosis

I'm sorry.

[NotThisTime]

2. Yes, for 15 years...

A different form, but a muscular dystrophy. I can't lie, it's been challenging and expensive in many ways. Sometimes I'm at the end of my rope, treatments are difficult and my outcome unclear, but I've made it this long.... if I can be of any help message me.

[pnwmom]

3. Thanks, NotThisTime.

I'm very sorry you're having to deal with this, too. Have you found any good online support groups?

[NotThisTime]

4. I really haven't found an online support group, I have a more rare form, so although some of my

problems are similar, my biggest problems are not similar. That's the thing about MD there are so many forms and they vary from person to person drastically. Outcomes from one person to another vary even more drastically. One thing I don't do is look at statistics, there's no point. my days can turn on a dime, my hours , my minutes they can vary drastically. My best piece of advice is something my Husband has never been able to do since I was diagnosed, live like you are living, not like you are dying for that day may be next month or 15 years or even 20 years down the road. Get out of the way all the things you wish you had done for there may never be a tomorrow. Have no regrets. I've done my best, it's often not good enough for ME. I have higher expectations for myself, maybe that's what's kept me around, the doctors can't explain it. Take a short time to mourn then move on for tomorrow might not be better, on the other hand tomorrow could be a whole lot better. It's just day by day..... PM any time, my days right now are better than they were a month ago so I'm more upbeat