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

[Firefighter58]

Good for you Kim
Al

 

[NekoiStar]

I just wanted to say hello, and that I love you all and am grateful for all of your love, hope, and encouragement.

I'm still crying a lot every day in spurts, but I get to start Neudexta tomorrow and I also get to schedule out my 2nd opinion and PEG tube placement, so lots of good movement for the future. As I said last week, it feels like I'm on a plateau for the moment and the progression seems to have settled on just what it's currently taken. Let's hope it stays like this for some time and I can keep functioning enough to get out in the world and see friends and family while I can still move and laugh a lot.

Again, super grateful to you all, I don't think I would've made it even my first month without you.

- Joanna

 

[KimT]

It's sunny and 88 degrees here on the ocean. I spend a relaxing hour in the pool today. It was almost too warm! Not that I'm complaining, the warm water makes my muscles feel so much better.

I hope everyone has a nice week.

 

[KevinM]

Hi everyone. Just had a lovely, cooling rain here in N. FL., and I love sitting on the porch watching it. I really enjoy the sound of distant thunder, though our sheltie Rosie magically disappears for an hour or so.

 

[bhg]

Still here. I’m ok, sort of… I tire more easily now and jittery eyes on eye-gaze cause havic on online projects, email, etc. Am trying to learn how to pace myself better, hard for someone with an over-active mind. Being house-bound, I really appreciate having access to the internet.

 

[Statius@]

Still here, doing about the same. Nurse sent by VA came to help me bathe and dress today. I hope it will provide some respite for my wife as time goes on.

Ed

 

[Firefighter58]

Hello Ed, I have PSW's coming in every morning to get me washed and dressed and my teeth brushed,, they are a blessing.

 

[gnat]

I arrived back home from my 7 week UK and Europe trip at the weekend, positive for covid. Did great to miss it for 7 weeks. Had a brilliant time with friends and family, including our 19 year old daughter joining us for a month. I don't think I deteriorated, apart from noticing a bit of loss of muscle in my legs, and I got a bit more confident walking ok on my MND legs. Was pretty nervous before I left. Worst experience was waking with severe bilateral calf cramps in a bed with a box around it that was hard to get over, ended up on the floor unable to get up because both calves were cramping and the floor was super slippery, and the agony continued until my husband came in and helped me up. I seem to need to stand to get the cramps sorted. I understand cramps will go in time? I have a fear of getting a cramp and not being able to resolve it when I cannot stand up. Is this a thing?

I had a work project start while I was away, so exciting to shape it further now I'm back. Dropped to 3 days a week from full time plus, so need to make sure I don't pick up too much extra work, and ruin the good intentions and time to have fun and look after myself. Off to Australia next week for what I am thinking might be my last time presenting papers at conferences then catching up for a girls weekend with a couple of friends. Gotta make the most of it while I can.

 

[Firefighter58]

Hello folks, signed all papers yesterday for my application for a nursing home placement. We think it will be better for me and my wife, she has worked diligently to get me through the last 6 years and it's taking a toll on her both physically and emotionally. It's a place that I can leave anytime I want for up to 29 days then I have to return for 7 days and then I can leave again for 29 days. I will be able to go up to the cottage or even go home for a few days if I so wish. It includes all meals, getting me up and dressed in the morning , washroom assistant ,in house barber shop, in house nurse and doctor and all meds administered and it's a private room. I guess I will know more once I get there.
Al

 

[KimT]

Magnesium helped me with cramps. Also, if they are horrible, Valium works. My ALS doctor said Valium is the drug of choice for cramp fasciculation syndrome and suggested I use it for ALS cramps. I have little to none spasticity but still get cramps, mainly when I overuse my legs and hands (which might just mean walking 300 steps.)

I'm so glad you had a great vacation!

 

[KimT]

Al,
I love how they give you freedom to come and go. My brother is in a VA home here and it has not been a good experience.
If I need a nursing home I doubt there will be one in this area that takes ALS patients.

 

[Aaronmandevill]

Today is a big meeting with Air Force higher up people at medical facility to determine what to do with me next. I need to get them on board with the feeding tube because otherwise it will be an out of pocket procedure.

Trying to enjoy each moment while I’m still mobile, rented a couple super cars this week to drive around town. First was a Tesla Plaid (0-60 in 1.9 seconds!) and then a bmw i8 that had Lamborghini doors. I think tomorrow night I will drive up to enchanted rock to see the stars. It’s a stargazing spot about an hour outside of San Antonio.

Weather here is a million degrees like usual. My goldendoodle Nilla just got a haircut.

 

[KevinM]

Aaron, renting a super car while you’re able is such a cool idea. I’ve heard lots of post diagnosis adventures, but this is a new one. Good for you!

 

[wmilo]

Hello, everyone. I was sick for a couple of weeks with an unpleasant stomach flu. Still getting back to a schedule, but I am starting to have some days feeling "normal".

Al, sorry to hear about the back pain. You might consider experimenting with your PWC to see if it will allow you to get in a more comfortable position, especially with an inflatable seat cushion. Have you tried MMJ for pain relief? I've seen some comments to the effect that cannabis plus Tylenol helped reduce or eliminate the need for opioids.

Best to all.

 

[bhg]

gnat, so glad you took the trip. The only time I “travel” now is each July watching the Tour de France, 3 week bike race. Takes me all over France. This year it started in Denmark and today we are in Switzerland.