BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
Couple questions ...
1) Is this an ALS symptom? (I don't think it is, but wanted to rule ALS out before wasting my valuable time on Google when I could be watching Lost online)
Dozens of times a day, I "freeze" into place. It happens when I'm walking ... it might take me several minutes to cross a room because I freeze in one position then "come to" and start walking again, and sometimes will freeze a few steps later. It happens sitting down, when I may freeze with my hand in the air, etc.
I think this is a Parkinsonian symptom, from what I've read and also observed of my husband. He has difficulty initiating movement (he's a Parkie), which is characteristic of PD, but he does not exhibit this "freezing" behavior that I have been having for several months.
I'm still concerned about Progressive Supranuclear Palsy (an early diagnosis) as reading the PSP forum, this "freezing into place" happens with PSP. Patients lock into certain positions ... maybe with their mouths open, arms out, etc ... and can't be "restarted" for I don't know how long. Reading caregivers messages on the PSP forum freaked me out. Also PSP is a form of dementia that can be very aggressive and I notice that my lability meltdowns seem to have a large element of anger and aggression in them lately.
This "freezing" could be one of those symptoms that appears, lingers a while and then disappears. But I know that PSP is considered halfway between ALS and PD, lots of overlap in symptoms with both diseases. So if anybody with ALS has had this "frozen gait" problem, please let me know!
The good news about PSP is that it's fatal. The bad news is that you live a couple years longer than with ALS.
2) Fasciculations.
There are no more fasciculations on my tongue. It's a little happy camper lolling around in my mouth doing nothing all day. So I assume the muscle is kaput. Does this mean my speech will stop getting worse? (Not that it could get much worse?) I am still able to generate noises that sound a little like speech and some people can understand maybe half of what I say. So it would be great if the end of fasciculations means the end of deterioration.
Thanks for any input.
1) Is this an ALS symptom? (I don't think it is, but wanted to rule ALS out before wasting my valuable time on Google when I could be watching Lost online)
Dozens of times a day, I "freeze" into place. It happens when I'm walking ... it might take me several minutes to cross a room because I freeze in one position then "come to" and start walking again, and sometimes will freeze a few steps later. It happens sitting down, when I may freeze with my hand in the air, etc.
I think this is a Parkinsonian symptom, from what I've read and also observed of my husband. He has difficulty initiating movement (he's a Parkie), which is characteristic of PD, but he does not exhibit this "freezing" behavior that I have been having for several months.
I'm still concerned about Progressive Supranuclear Palsy (an early diagnosis) as reading the PSP forum, this "freezing into place" happens with PSP. Patients lock into certain positions ... maybe with their mouths open, arms out, etc ... and can't be "restarted" for I don't know how long. Reading caregivers messages on the PSP forum freaked me out. Also PSP is a form of dementia that can be very aggressive and I notice that my lability meltdowns seem to have a large element of anger and aggression in them lately.
This "freezing" could be one of those symptoms that appears, lingers a while and then disappears. But I know that PSP is considered halfway between ALS and PD, lots of overlap in symptoms with both diseases. So if anybody with ALS has had this "frozen gait" problem, please let me know!
The good news about PSP is that it's fatal. The bad news is that you live a couple years longer than with ALS.
2) Fasciculations.
There are no more fasciculations on my tongue. It's a little happy camper lolling around in my mouth doing nothing all day. So I assume the muscle is kaput. Does this mean my speech will stop getting worse? (Not that it could get much worse?) I am still able to generate noises that sound a little like speech and some people can understand maybe half of what I say. So it would be great if the end of fasciculations means the end of deterioration.
Thanks for any input.