nikim1806
Member
- Joined
- Sep 19, 2010
- Messages
- 10
- Reason
- PALS
- Diagnosis
- 12/2010
- Country
- US
- State
- pa
- City
- State College
Last Feb I noticed the first signs (while lifting weights one day I could do 10 reps, next my left arm could only do 5) by June I saw a doctor because I was having some small trouble typing with my left hand, it's 10 months since the first sign and I can still type (though not 1/2 as quickly as I could) and my wrist has a decrease in strength. My doctor officially gave me the diagnosis yesterday so I'm now on his mailing list for any drug trials. and he has had me on rilutek (sp) since august.
so nearly a year and it's barely left my hand (and while it's slow and clumsy it's still usable)
i'm 37, single mother of a 20 year old and a "unique" 11 year old, both girls.
anyone else start this way? anyone have it stay only in one limb? My doctor said 5 years was realistic to hope for but 10 was less likely, which sucks but my more immediate fear is mobility, I mean 10 years is one thing if I can walk for 5 of it, it's another if I’m on a vent in 2
I am a planner, I would feel better about things if I could hear other stories so I can get some idea of the variables. I am ok having 50 contingency ideas.
How did it progress for others? Did you lose full mobility in one limb before it moved on? Do you lose full mobility or does it just get harder? How long did different steps take? I’d like to hear (well ‘like’ may not be the right word) your stories.
also i am scared, can't admit it to my family or friends yet but i wake up each night in a full blown panic, how am i going to do this.
so nearly a year and it's barely left my hand (and while it's slow and clumsy it's still usable)
i'm 37, single mother of a 20 year old and a "unique" 11 year old, both girls.
anyone else start this way? anyone have it stay only in one limb? My doctor said 5 years was realistic to hope for but 10 was less likely, which sucks but my more immediate fear is mobility, I mean 10 years is one thing if I can walk for 5 of it, it's another if I’m on a vent in 2
I am a planner, I would feel better about things if I could hear other stories so I can get some idea of the variables. I am ok having 50 contingency ideas.
How did it progress for others? Did you lose full mobility in one limb before it moved on? Do you lose full mobility or does it just get harder? How long did different steps take? I’d like to hear (well ‘like’ may not be the right word) your stories.
also i am scared, can't admit it to my family or friends yet but i wake up each night in a full blown panic, how am i going to do this.