BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
Hi, all ... an update on my third clinic visit at UCLA yesterday (as opposed to my trial visits).
My "gross" strength is still good, hasn't changed much since my first visit in June, but left leg and arm are slightly weaker.
The neuro did not seem impressed by my improvement in speech and hand strength since last week (I wrote about that on another forum), so I will chalk that up to probably normal fluctuations in ALS. And enjoy being able to turn keys and pop pop-top cans again! I got through a three-hour clinic appointment with me talking all the time, and only had to use the LightWriter 3 or 4 times to clarify a word. Two weeks ago, that wouldn't have been possible.
Alas, breathing is way down, FVC at 49%, down from 70-something. Am going ahead with plans for the PEG and BiPap.
They don't want me pushing Paul in a wheelchair any more, and it IS getting hard. He was in such bad shape yesterday, shaking and cold and feeling sick as a dog that I had to get him a blanket in the waiting room and keep rubbing his arms for warmth, and in the exam room, he lay on the table with the blanket during the whole visit.
The only time we use the wheelchair is at UCLA, because of the distances, so I think I'd best leave him home in the future. The neuro also doesn't want me physically helping him ... like, pulling him up into a seated position when he's lying down trying to get up. I can't see hiring a caregiver to sit around waiting for him to try to sit up. But she said, "Caregiving is too stressful," and I shouldn't be doing it. But I don't see an alternative right now.
SOMEHOW I have got to come up with an explanation for what is going on in his body, besides the Parkinson's. Our insurance case manager wants us to change PCP, so I'm looking into that. We have an appointment with a new guy on Dec. 30. I'm going to pay for the consult see if we click with this guy before making the change through insurance. But Paul is very, very sick, and somebody's GOT to come up with an answer.
They want me to use a walker to prevent falls. I've had some near misses lately, where I lose balance or my left leg gives out. I can't see using a walker yet ... I walk too fast for that. I know one good fall will convince me, but ...
Finally ... if you can't get a neuro's attention with "twitching and cramps" (although I don't think I've ever mentioned "twitching" at a clinic visit ... isn't that funny ... it's a complete non-issue with ALS, but something non-ALS patients fixate on), try "seizures and hallucinations." I didn't think what I was experiencing were seizures, I thought they were the clonis things Caroline writes about, but I was able to demonstrate for the neuro what happens when I wake up in the middle of the night, with my arms flailing around, and legs and torso jerking.
Anyway ... the neuro called them seizures. I've also been having bouts of euphoria since last December, which I've mentioned before,with altered visual perception of the world ... as if I had never seen it before. It is like being able to see down to the molecules in everything ... everything becomes very intense and quite beautiful. These are wonderful,wonderful experiences. The lability meds have muted the "rapture," but the changed perceptions remain, and it seems that now I can tap into it at will. This is what I was trying to achieve in 15 years of yoga ... who knew I just need a little ALS instead of all those downward dogs? I am also having language issues with printed text, which are not so hot.
Anyway, the neuro's scheduling MRIs of my brain, and EEGs, and CT scans, etc. The works. I told her, I'll take more hallucinations and altered perceptions, please, but hold the language issues and seizures. The hallucination was only once, and only for a few seconds, but it was spectacular.
I have been operating under the assumption that I have FTD, which can cause the language problems as well as the euphoria, but seizures and hallucinations are not part of it. So now I have to spend my time Googling "Temporal Lobe Epilepsy." If this is what it is, it can be handled by normal anti-seizure meds.
(Odd thing: All of Paul's problems started about 30 years ago with temporal lobe petit mal seizures. That led to the tingling, burning, etc., etc., which led to chronic pain. Coincidence?)
So, it was a rich, full day at the clinic ... for me, if not for Paul. Sorry to write such a long shopping list of symptoms!
My "gross" strength is still good, hasn't changed much since my first visit in June, but left leg and arm are slightly weaker.
The neuro did not seem impressed by my improvement in speech and hand strength since last week (I wrote about that on another forum), so I will chalk that up to probably normal fluctuations in ALS. And enjoy being able to turn keys and pop pop-top cans again! I got through a three-hour clinic appointment with me talking all the time, and only had to use the LightWriter 3 or 4 times to clarify a word. Two weeks ago, that wouldn't have been possible.
Alas, breathing is way down, FVC at 49%, down from 70-something. Am going ahead with plans for the PEG and BiPap.
They don't want me pushing Paul in a wheelchair any more, and it IS getting hard. He was in such bad shape yesterday, shaking and cold and feeling sick as a dog that I had to get him a blanket in the waiting room and keep rubbing his arms for warmth, and in the exam room, he lay on the table with the blanket during the whole visit.
The only time we use the wheelchair is at UCLA, because of the distances, so I think I'd best leave him home in the future. The neuro also doesn't want me physically helping him ... like, pulling him up into a seated position when he's lying down trying to get up. I can't see hiring a caregiver to sit around waiting for him to try to sit up. But she said, "Caregiving is too stressful," and I shouldn't be doing it. But I don't see an alternative right now.
SOMEHOW I have got to come up with an explanation for what is going on in his body, besides the Parkinson's. Our insurance case manager wants us to change PCP, so I'm looking into that. We have an appointment with a new guy on Dec. 30. I'm going to pay for the consult see if we click with this guy before making the change through insurance. But Paul is very, very sick, and somebody's GOT to come up with an answer.
They want me to use a walker to prevent falls. I've had some near misses lately, where I lose balance or my left leg gives out. I can't see using a walker yet ... I walk too fast for that. I know one good fall will convince me, but ...
Finally ... if you can't get a neuro's attention with "twitching and cramps" (although I don't think I've ever mentioned "twitching" at a clinic visit ... isn't that funny ... it's a complete non-issue with ALS, but something non-ALS patients fixate on), try "seizures and hallucinations." I didn't think what I was experiencing were seizures, I thought they were the clonis things Caroline writes about, but I was able to demonstrate for the neuro what happens when I wake up in the middle of the night, with my arms flailing around, and legs and torso jerking.
Anyway ... the neuro called them seizures. I've also been having bouts of euphoria since last December, which I've mentioned before,with altered visual perception of the world ... as if I had never seen it before. It is like being able to see down to the molecules in everything ... everything becomes very intense and quite beautiful. These are wonderful,wonderful experiences. The lability meds have muted the "rapture," but the changed perceptions remain, and it seems that now I can tap into it at will. This is what I was trying to achieve in 15 years of yoga ... who knew I just need a little ALS instead of all those downward dogs? I am also having language issues with printed text, which are not so hot.
Anyway, the neuro's scheduling MRIs of my brain, and EEGs, and CT scans, etc. The works. I told her, I'll take more hallucinations and altered perceptions, please, but hold the language issues and seizures. The hallucination was only once, and only for a few seconds, but it was spectacular.
I have been operating under the assumption that I have FTD, which can cause the language problems as well as the euphoria, but seizures and hallucinations are not part of it. So now I have to spend my time Googling "Temporal Lobe Epilepsy." If this is what it is, it can be handled by normal anti-seizure meds.
(Odd thing: All of Paul's problems started about 30 years ago with temporal lobe petit mal seizures. That led to the tingling, burning, etc., etc., which led to chronic pain. Coincidence?)
So, it was a rich, full day at the clinic ... for me, if not for Paul. Sorry to write such a long shopping list of symptoms!