Hi Jacqueline. I've been off the board for a while and I just saw
your post. I am a 50 year old male living in Toronto, Canada. I
was diagnosed with MTM in January 2004; having first experienced
weakness in my legs in November 2003. I started using a cane in
October 2003 and had my car modified in Aug 2004 so I could still
I'm still able to walk for short distance with an "old man's
shuffle", but the thing I hate most is stubbing my toe on
that 'thingy' on the bathroom floor they put which separates the
tiled floor and the carpeted hall.
I never thought I'd say this, but I'm actually looking forward to my
first power-chair! I'm at the point now where I don't do any non-
essential traveling. I go out for groceries and doctor or lawyer
apointments - that's it. I live alone so going days without
seeing/talking to anyone does get a little depressing at times, but
what can you do!
I guess I'm fortunate in one respect in that, I've never been one to
worry about things that I can't do anything about. In that sense,
I'm kinda OK with that fact that there is no treatment for MTM; and
I don't feel any real concern for knowing which type of MTM that I
have since they are all untreatable.
"Life isn't fair, it's just Life! Get the most out of it you can."
I'm probably the not the best one to give advice here, but I figure
people in this situation have basically two choices.
1) you can crawl into a hole and wait to die, or
2) you can live your life the best you can with the cards you are
As others can tell you better then I, there are still a LOT of
possibilities out their for disabled people; and room for a lot of
joy if you're willing to look for it instead of being
blinded/consumed by the bad. Focus on what he CAN do, not what you
Best wishes to you and your fiance.
--- In Myotubular_Myopathy@yahoogroups.com
> OR A FAMILY MEMBER WHO HAS IT?
> MY FIANCE HAS IT. ITS HARD TO DEAL WITH HIS DEPRESSION OVER IT -
> SUGGESTIONS? HE GETS MOODY AND I NEVER KNOW HOW TO REACT. PART OF
> TIME I ACT LIKE NOTHING IS WRONG. THE OTHER PART OF THE
> ALWAYS ACT LIKE NOTHING IS WRONG. LIKE ITS NO BIG DEAL, EVEN
> IS. I KNOW SOMEDAY HE WILL BE IN A WHEELCHAIR, AND I KNOW THE
> UPSETS HIM.I DONT KNOW HOW TO FEEL ABOUT IT. ABOUT ANY OF IT. OR
> TO ACT ABOUT IT. ANYBODY OUT THERE HAVE ANY SUGGESTIONS? OR
> WANT TO TALK? MY YAHOO MESSENGER ID IS juliet0068000. come talk to