halfin
Senior member
- Joined
- Jun 29, 2009
- Messages
- 540
- Reason
- PALS
- Diagnosis
- 08/2009
- Country
- US
- State
- CA
- City
- Santa Barbara
My first symptoms were bulbar, some breathlessness while speaking early this year, then slurring started at the end of April. A few weeks later I noticed my hands felt strange and weak while writing, but they still were strong in strength tests.
I was diagnosed in August and in the past two months I've had some noticeable progression. My hands are quite a bit weaker, especially the right hand, and I'm having some trouble with knives in the kitchen. However my legs are holding up pretty well. I was training for a marathon six months ago, and I've cut back to some easy jog/walks of two to three miles. Still by ALS standards this is a lot and so I'm keeping my fingers crossed (can still do that with some difficulty!) that my legs stay good.
So what I'm wondering about is, looking ahead, what should I expect in terms of progression and possible assistive devices? My insurance will pay for DME (durable medical equipment) but there is a limited amount per year, so I was thinking maybe I should ask the doctor to prescribe something I might need next year, so I can get it this year and still have the full amount available later.
Then my wife and I were talking about possible home modifications we might need to make down the line, even considering moving into a more accessible house. This is a big step for us, to take the diagnosis so seriously. Most of the focus in what I read is on wheelchair accessibility. Then they talk about putting in grab bars and such. But I am worried, if my hands go before my legs, then by the time I need a wheelchair, will I even be able to use my hands? Will I be able to use grab bars?
I know everyone is different but I wonder how other people fared who may have started with similar symptoms and presentation. Thanks!
I was diagnosed in August and in the past two months I've had some noticeable progression. My hands are quite a bit weaker, especially the right hand, and I'm having some trouble with knives in the kitchen. However my legs are holding up pretty well. I was training for a marathon six months ago, and I've cut back to some easy jog/walks of two to three miles. Still by ALS standards this is a lot and so I'm keeping my fingers crossed (can still do that with some difficulty!) that my legs stay good.
So what I'm wondering about is, looking ahead, what should I expect in terms of progression and possible assistive devices? My insurance will pay for DME (durable medical equipment) but there is a limited amount per year, so I was thinking maybe I should ask the doctor to prescribe something I might need next year, so I can get it this year and still have the full amount available later.
Then my wife and I were talking about possible home modifications we might need to make down the line, even considering moving into a more accessible house. This is a big step for us, to take the diagnosis so seriously. Most of the focus in what I read is on wheelchair accessibility. Then they talk about putting in grab bars and such. But I am worried, if my hands go before my legs, then by the time I need a wheelchair, will I even be able to use my hands? Will I be able to use grab bars?
I know everyone is different but I wonder how other people fared who may have started with similar symptoms and presentation. Thanks!