PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

wmilo

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Zelienople
Greetings, all.

We've been experiencing wide temperature swings with highs varying between mid-90s and high 60s. I'm not outdoors very much so it doesn't affect me very much (but we have used both furnace and A/C recently).

Regarding ability to type, my lack of hand/arm control has made typing very laborious. I experimented with the native Windows 10 voice control; it has some nice features but I found it a bit lacking for me needs. I've ended up using Dragon Home voice control software, and it works pretty well. I find it a bit cumbersome for web browsing but it's fine for dictation. For anyone who may want to go that way, I suggest getting it before you really need it so you can practice gradually and not become too frustrated. :)
(IOS has pretty good voice controls, but for me I can't manipulate my tablet or phone very well.)

Otherwise, still using all the equipment (PWC, Hoyer, BiPAP, cough assist, etc.), with the sorry-I-need-it / glad-I-have-it thing going on. :)

And hang in there to my fellow travelers.
 

KimT

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Bill, I used to use Dragon for dictation long before ALS. It gave my hands a rest. It does a good job understanding your voice when you do multiple practice sessions. I'd advise anyone to start now. I found it got better and better as time went on.

Now I'm 100% Apple. I have an iMac that I bought at the beginning of the pandemic. I bought a keyboard that works for me (can't use the one that came with it.). I've also tested some ios voice apps. I have a feeling my voice will be here for longer than my hands....but one never knows. I really don't want to voice bank. I'd rather just use what's available.

Anyway, glad you're having success with Dragon. I agree. Start early. I've had my PWC for a long time and I've only used it a few times but I'm glad it's there. Same with the walker.
 

NekoiStar

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Apr 16, 2022
Messages
24
Reason
PALS
Diagnosis
05/2022
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US
State
MT
City
Billings
Hell everyone,
I figured I should pulse check here a bit. The last 2 weeks have been a lot of waiting. I'm officially on ALS meds for about a week and am waiting on the 2nd opinion hospital to get back to me about when they can see me. I decided to chase after this so I can make it 100% conclusive so I have no reason to place false hope on it being anything else.

I seem to have plateaued off as far as progression goes. My right arm is currently trying to match my left as far as weakness goes but my speech seems to be about the same as long as I can be calm. I can feel some tightness in muscles in my body, mostly in my arms, neck, and hands, but thankfully they are still mobile and, albeit slow, but functional.

I'm still waiting on my passport, I applied back in early May and we're currently on week 6 on the wait and even the expedited request can take upwards to 8 weeks. Hopefully, soon I can get out of the country to the United Kingdom to be with my love for a few weeks.

My Dad has been really supportive and has taken me out to a ZZ Topp concert and we recently celebrated fathers day with a lunch outing. Another friend of mine took me out on an evening drive around the Bull Mountain area and it was really comforting.

I myself though, have not been well the last week, adjusting to the new medication and my anxiety has really messed up my sleep schedule. The good news is that I'm sleeping more than 4 hours a day finally, but I'm staying up until 4-7 AM now and sleeping through the day.

I've also had a lot of dreams recently where I'm with my grandmother. The most recent was 2 days ago where I was physically 100% again and she was there telling me to pick a room in her home and start preparing it. I was so happy to be with her and was so busy making my room the way I wanted it with my own two hands and body. I didn't want to leave the dream, but I was told I had to for now and I woke up.

I know my grandmother is trying to comfort me and letting me know that there is a place for me when this life is done. It just scares me because it makes me feel it's sooner than later.

I'm still hoping this is something else and not ALS, hopefully, the 2nd opinion can put that to rest one way or the other.
Thank you for taking the time to read this, I am very grateful for your love and support.

- Joanna
 

KimT

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Joanna,
I think dreams help us process things. It is very important to sleep restfully and there is evidence that the hours between 10 pm and 3 am are targeted. I've spoken to a sleep expert about this because I used to stay awake until 2am, then sleep until 10 am. Finally, with the help of medicine, I got my rhythm back and I fall asleep at about 11, wake up once during the night, then get up at about 7. That seems to work best for me to feel refreshed. If I feel like a nap, I'll take it.

Glad you got to se ZZ Topp. Your Dad sounds very cool.

Just remember if the second opinion confirms, some of us are slow progressors and there is life after diagnosis.

Kim
 

swalker

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Dec 11, 2014
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Diagnosis
07/2014
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CO
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Vail
We returned from our spring trip to Yellowstone a week ago. It was an exciting, but very wet trip. We spent 3 weeks in Yellowstone and then headed for the Tetons a few days before the big flood hit Yellowstone. We got wet, but really did not have much impact from the flooding.

The trip really wore me out. I have been resting for the last week and still feel like I could sleep 20 hours a day. I lost a bit of weight on the trip and have been working hard to reverse that.

Steve
 

NekoiStar

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Joined
Apr 16, 2022
Messages
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Reason
PALS
Diagnosis
05/2022
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US
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MT
City
Billings
Thank you so much, Kim,

I hope I am a slow progressor, I want to be with my family as long as I can and adventure more even if it's just in my own backyard. Thankfully Montana is a wonderful place for it and I have friends and family who are willing to take me out to see it.

I'm about 99% certain this is ALS, the testing was pretty thorough and I have been noting my progression on a weekly basis so I myself can have a timeline to provide. I still hope that this is something else that just missed the radar sweeps and I can get treated for it, but if not, I am ready to do my best to live my best and be as happy as I can be with those I love.

I am so infinitely grateful for you and this community as you have all helped me out and by reading your stories and encouragement I know I can make the absolute best of this.

- Joanna
 

Clearwater AL

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Get Real
Don’t post much here, now not wanting to post a “downer’ following all the beautiful pictures
and vacation trips but…

I’ve seem to have cornered the rare over the years, rare medical procedures and surgeries

I was referred to a neurosurgical spine and brain specialist. All the tests and procedures again.
I’ve had severe lower back aches, not pain but ache. Left foot, left leg, left hand muscles gone.
It’s moving up, very little muscle in my butt... in a hard chair sitting on bones.

Now the atrophy has moved up more. It’s been discovered the muscles that help support
the spine in my back are now atrophying. (If I sit in my office chair with all kinds of adjustments
or lay on my left or right side I’m fine. As soon as I stand up or walk the ache starts. A back brace
doesn’t help.)

This is causing pressure on my already two bulging discs, two hemangiomas and from age…
some degenerative disc disease. Even Tramadol won’t help.

Don’t know if other PALS have had the same.

I have the custom wheel chair. I look at it…I’m just not ready to plant myself in that thing yet.

Anywhooo… don’t post much about my situation but there it is.

Back to beautiful pictures, vacations and upbeat posts. :)
 

Nikki J

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This thread is for PALS to talk about whatever they want - good and bad. Al I am sorry. My sister’s torso was very weak she couldn’t walk anyway but had to recline/ tilt her wheelchair and had a lot of pain at night because of the lack of muscle support for joints and spine even without underlying back issues. I hope you find some comfort.

not much happening here. So far we have only had a couple of hot days and nights are actually a little chilly. It is midday now and I am wearing a light sweater. Strange weather!
 

lisa g

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04/2019
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FL
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Fort Pierce
Al, I'm sorry that your experiencing discomfort this disease is relentless. Is there anything you can take to ease the aches? I get painful spasms so my neurologist put me on Tizanidine. I take 2mg's 3 x's a day. It diminishes some of the discomfort.
 

Clearwater AL

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Get Real
Hey Liza, Tizanidine is a muscle relaxer… really that’s the last thing I need
at this time. It’s a common prescription for those with MS.

In a way I may be confounding my situation because I have a big reluctance
to doing opioids, (like hydrocodone and stronger). They had to talk me into the
Tramadol, just yesterday the doctor really wants me to double the dose from
50MGs to 100MGs three times a day. Ok, I’ll give it a try.

At this time two doctors are working together whether to try epidural shots.
Will know Monday morning. And the neurosurgeon mentioned some possible
surgical procedures. Right about now... I’d do that tomorrow if it was the
final solution.

Whatever… :)
 

KimT

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Al, I've been able to break a very bad back pain cycle twice with Oxy. I don't stay on it but I use it as necessary. I deal with a lot of pain and even bought a new lift chair that had much better lumbar and neck support. I do take Valium at night because my muscles need relaxing and it helps me sleep, along with the Remeron.

I hope you find a solution. Pain is the worst.
 

gnat

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Joined
Mar 20, 2022
Messages
12
Reason
DX MND
Diagnosis
03/2022
Country
NZ
State
AK
City
Auckland
We visited Heidelberg briefly, was great. Definitely have been having fun and adventure. The trip finishes on Thursday and we have a 24 hour flight home then jet lag, cold, wet weather and short days. But I have managed with MND much better than I hoped on the trip. And thinking we might be over to Scotland next year. We will see...
 

Firefighter58

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Jun 21, 2016
Messages
651
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
Hi folks,still doing well and as always looking forward to tomorrow. Still confined to a wheelchair and can not speak but so be it. I consider myself lucky, I was just texting with an old friend who just found out that he has stage 4 cancer, there is always someone worse off than me.
Al
 

KimT

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Al, I come from a very small village and have friends on FB whom I've known for over 60 years. I was shocked, during the past six years, to see how many of them have died. Mostly from cancer or heart disease.

On a happy note, my very best friend from Catholic school (K-8) just moved from Seattle to Ormond Beach so we're only about 15 miles from each other. Hoping we can get together.
 
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