Status
Not open for further replies.

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!
 
Beth,

Really sorry to hear your breathing has declined so much. But I'm a little suspicious... I just talked with a friend of mine, Corliss, who also went to UCLA yesterday and also had her FVC measurement drop off.

Was this the first time Glenn measured your breathing and not Tom? I wonder if there are measurement variations from one RT to another?

I dunno, yours is a pretty big drop and I don't want to give false hope, but just something to consider. Do you find yourself out of breath more? Have you noticed changes yourself?

Oh, and, stay away from that LSD... :smile:

Take care,
-Tom
 
hi beth.
firstly i am really sorry to hear your husband is not very well right now,i hope it is something besides his parkinsons that they can treat.
my uncle is in the late stages of parkinsons so i know what both of you are going through.

myoclonus/myoclonic jerks or seizures are what you are talking about.
mine used to effect the whole of my body like you described but now it is just mostly my right side,a limb will feel odd for a second(like a sudden electrical surge is going through it) then it will shoot up or out . i have focal reflex clonus in my right knee causing my lower leg to shoot up,not good if you are standing.
my right side of the trunk also has it and jerks to the left.
i was offered anti seizure drugs but did not want any more strong meds,they are not all the time so can live with the odd jerks.

i am glad you are feeling a little better but still like the neuro said take things easy.
it must be so hard for you with your husband also being so ill,you have to look after yourself so you stay stronger longer to care for your husband.
sometimes i think if we have others who need us to take care of them(like you and your husband/cats and me with my son/cats) then it takes are mind off ourselves and keeps us more active and going longer.
is there anyone nearby who can give you a little help for a hour or two a day?
you need a little time out sometimes just to sit quietly and read or something.
i dont know how you manage being ill and being a carer for your husband.
i think the older generations just get on with things,puts the younger ones to shame.
you are both in my thoughts.
 
Beth,
Bless your heart. I'm sorry your husband is not doing well, hopefully you can find some way to get some help for him, and soon! I would write more, but right now I'm at work, which is ok with me being on here during my lunch, but my head is really congested, so I'm heading for the ibuprofen!
I'll talk to ya later,
hugs,
brenda
 
Beth, I was just getting ready to send you a message asking how your appointment went, then here your post is :smile:

I wish I had something to offer about Paul, its just so hard to know that you're there in the position of a caregiver, when you really ought to be having someone physically well enough to care for you. I realize Paul is considerably older than you, so, although you probably didn't really think about it that much in the early years, I'd guess you assumed there would come a time when you'd be the one to handle most of the things at you home. It just sucks (sorry, my vocabulary fails me for a better word) that the time in Paul's life came right when you need someone too.

I have friends that, instead of getting skilled care, advertise (also word of mouth) at local shops, etc, for someone that could come in and just be paid under the table, you know, like a woman who's kids are grown but she's still active and just wanting to get out and be useful.

I found a pet sitter ~ which of course is no where near the same thing, but yet the person needed to be trustworthy, and love animals - via a caregiver match up website. It wasn't just pet sitters, but for children, the elderly, etc. It is a network where the caregiver looking for employment posts what they would like to be paid per hour, and other information that makes it easy to zero in on someone. In the end, I actually ran my own ad, (was swamped with responses, who knew?) and the woman that I chose doesn't even want to take as much as I want to pay her. ~ and, when one of my finches died while I was away at Hopkins, she felt so bad she tried to give him mouth to mouth CPR, and had bought me roses, to help soften the blow when I got home and found what had happened. My point with the story is that there really are caring people out there that are looking for interaction with others without money being their primary motive. If you were able to get someone in that you were compatible with, it would get easier and easier for you to accept a little more assistance as you got used to it.

Re: the walker... yes, just think how un fun it is to fall! I think the walkers that have the little seat that you can drop down and use are a great invention. (I've caved in and bought a couple of canes ~ coordinated to match my shoes and purse of course. I actually get compliments on my leopard print one :cool: )

I agree with Tom about the breathing test readings. Plus, the way it was explained to me, those with bulbar weakness often score much lower than they should, not because of respiratory muscle weakness, but because of the weakness in the lips and throat area. I know I can't keep a tight seal on that mouthpiece, and your lip has more weakness than mine does.

The seizure angle is interesting, and hopefully easily treated. .... so.... no magic mushrooms or LSD going on though? I mean, you are in La La Land :smile:

Here's hoping there is some relief for your dear husband! Please let me know what you think after the appointment with the new doctor..... and about your PEG, is it scheduled?

big (((((HUGS)))))
 
Thanks for the support, guys ... Tom, it was my first time with this pulmonary guy, and there was a problem with lip seal (since I have none) ... he finally had to mickey mouse various do-hickeys together. (Sorry for the technical language) We never did get a good seal. I'm having a more extensive lung fuction test coming up so my pulmonary guy in the valley can order the BiPap. I have been out of breath for a while, but not too bad.

As for the euphoria, I'm already planning to market it on Craigslist. It may not sell too well if people find out that ALS comes with it, so I'll put that part in small print.

Caring for Paul really doesn't take too much effort, since he's stopped falling. The Carbidopa has helped his walking a lot. He's much steadier. But he does need a boost a few times a day, helping him up.

Onward and upwards ...
 
Beth- I love your sense of humor! That kind of laughter will get you through a lot. But if you can't ask for a little help when you are past your 40's and one has ALS and the other has Parkinson's, then when can you ask? :lol: That's my theory, anyway! Cindy
 
Beth,

I just want to tell you how much I enjoyed reading about your trip with Paul to UCLA. I'm glad to see that there has been some improvement in his walking. I would really like to see him get better, a lot better. That would sure be a burden lifter for you.

Hey, is there any way you can teach me how to make contact with euphoria world?

Zaphoon

(I'm ready for a trip)
 
Hey, Kim ... all I can tell you about Euphoria World is that downward dog is way overrated as a path to nirvana! On the other hand, it beats ALS. :)

Rose ... LOVED the story of your helper giving mouth to beak CPR on your poor little finch.

Cindy ... I do have someone coming in once a week (such luxury!) to help me with grooming and do laundry and clean. Maybe this is what's behind my strange perceptions ... I'm looking at a dust-free house! Never seen one of those before !

I think you're right Caroline ... it helps to have someone else to fuss over. My goal next year is to fully domesticate the little wild kitties so I can find them homes ... but I can't have them running around in the house with two people prone to tripping. I'll figure something out ...

I'm just trying to picture how you make dinner in a small kitchen with a walker.
 
OH MY GOSH, i cant believe you were able to push a wheelchair and have that kind of FVC! Mine is <85 and when i go grocery shopping i get winded, what a baby i am! Sam
 
Beth,

Downward Dog is out of the question! (had to "google" it to find out what in the heck it was) I couldn't get myself in that kind of position if I had 30 minutes to do it in. AND, once I did (if I could), it would take me another 30 minutes to get up off the floor. So, you are right! It is not a very good path to nirvana for me, at least.

Maybe I'll be put on some strange, new medicine for my muscles which prove to have some unforseen, euphoric effect that will enable me to float effortlessly into the clouds where I could then see every color of the rainbow and then some. Maybe even a flying monkey or two! Pretty butterflies; flond haired fairies and money trees, ripened and ready to be picked!

Z
 
Kim ... when you get to the monny tree, send me some samples ...
 
Beth - I used to go to UCLA and I went from 79 to 54 in 3 months with the same RT. I started on bi-pap ocassionally at that time. Now as of a few weeks ago I am at 43. I had a test laying on my back at the Resp. clinic at Loma linda. My sitting number is 69. I have peg scheduled for 12/10 with an overnight stay. Yucky food but otherwise the hosp is OK.

Sharonca
 
Thanks for the info, Sharon ... my insurance case worker wanted me to make sure they tested me lying down, but that didn't work out. My pulmonologist is scheduling a longer test, so maybe I'll get better numbers. If not, not ...

Good luck on the PEG! Let us know how it goes. I'll be getting mine soon.
 
tall stool on wheels

Standing while doing dishes is not working too good. I recently purchased a tall stool with 3 legs and rollers. It works great in the kitchen and is easy to move out of the way. When I open cabinet under the sink I can reach sink easily. I had to put an extra pad on it and it is a little tricky getting on it, but if I am careful should work for awhile.

Does anyone have trouble with headaches? They started 1 yr before I had symtoms. Now my headache meds are not working so good. Drs don't seem to think they are connected. There also has been some lightheadedness, but so far haven't fallen. I hate to start using walker if I can get by without it.
 
Status
Not open for further replies.
Back
Top