halfin
Senior member
- Joined
- Jun 29, 2009
- Messages
- 540
- Reason
- PALS
- Diagnosis
- 08/2009
- Country
- US
- State
- CA
- City
- Santa Barbara
ALS is a somewhat unpredictable disease. We think we know what is coming next but I have been having surprises.
My first symptom was difficulty speaking. My words were slightly slurred and my voice a bit rough. Shortly afterwards I noticed slight weakness in my right hand - especially when signing my name I felt awkward controlling the pen.
I got my diagnosis pretty soon, strangely after the EMG showed bad signs in my legs. Yet my legs felt fine, in fact I was running 10+ miles a day sometimes. But I had very little progression for a few months.
Finally about September I had a stressful month and did have quite a bit of progression, particularly in my right hand, which got quite weak to the point I had to ask my wife to open things for me. My voice too got weaker and very hoarse. My legs lost stamina although I was still able to run a little.
We thought we knew what to expect. It had started with my voice, so I did voice banking and started looking at speech devices. The voice banking was exhausting actually and I think played a role in my hoarseness. Then it had hit my hands, so we got some knives with larger handles and some special built-up handles for other silverware. We were all set.
But actually, I haven't had any more progression at all in those areas. In fact my voice has actually even improved a little, I think. I can yell again, and the fluency is hardly different than when I was diagnosed. My hands have stabilized and I have learned ways to do things that were giving me trouble. I was starting to have a little trouble swallowing, but I have switched what I am eating and drinking and that is working well now.
Surprise, it is my legs where the progression has moved in. I had to stop running in November, get a cane by the beginning of December, and a wheelchair in January. Luckily MDA was able to get me a power chair for which we are very grateful. I can still walk for a few minutes but beyond that I want the WC.
I would have thought, with an organized, logical illness, it would go through one body part until it was done, then move onto another. But my ALS seems to have ADD. It gets started in one place, gets bored and then jumps somewhere entirely different. It means that I really have no idea what to expect.
I'm not complaining though; I am very grateful to still be able to speak and type almost normally. It means I can still work and stay busy. Losing my legs has been a pain but with the PWC we are pretty well set now. I actually enjoy driving it around, and it's been fun learning to maneuver it around furniture and down ramps and such. Who knows what excitement is coming up next...
My first symptom was difficulty speaking. My words were slightly slurred and my voice a bit rough. Shortly afterwards I noticed slight weakness in my right hand - especially when signing my name I felt awkward controlling the pen.
I got my diagnosis pretty soon, strangely after the EMG showed bad signs in my legs. Yet my legs felt fine, in fact I was running 10+ miles a day sometimes. But I had very little progression for a few months.
Finally about September I had a stressful month and did have quite a bit of progression, particularly in my right hand, which got quite weak to the point I had to ask my wife to open things for me. My voice too got weaker and very hoarse. My legs lost stamina although I was still able to run a little.
We thought we knew what to expect. It had started with my voice, so I did voice banking and started looking at speech devices. The voice banking was exhausting actually and I think played a role in my hoarseness. Then it had hit my hands, so we got some knives with larger handles and some special built-up handles for other silverware. We were all set.
But actually, I haven't had any more progression at all in those areas. In fact my voice has actually even improved a little, I think. I can yell again, and the fluency is hardly different than when I was diagnosed. My hands have stabilized and I have learned ways to do things that were giving me trouble. I was starting to have a little trouble swallowing, but I have switched what I am eating and drinking and that is working well now.
Surprise, it is my legs where the progression has moved in. I had to stop running in November, get a cane by the beginning of December, and a wheelchair in January. Luckily MDA was able to get me a power chair for which we are very grateful. I can still walk for a few minutes but beyond that I want the WC.
I would have thought, with an organized, logical illness, it would go through one body part until it was done, then move onto another. But my ALS seems to have ADD. It gets started in one place, gets bored and then jumps somewhere entirely different. It means that I really have no idea what to expect.
I'm not complaining though; I am very grateful to still be able to speak and type almost normally. It means I can still work and stay busy. Losing my legs has been a pain but with the PWC we are pretty well set now. I actually enjoy driving it around, and it's been fun learning to maneuver it around furniture and down ramps and such. Who knows what excitement is coming up next...
