Update...

[Clearwater AL]

There hasn’t been much going on this sub-forum from PALS.

My progression has taken an upswing starting a couple
months ago.

So here goes from me. I took it as far as I could go… the
power wheel chair is on its way. The bathroom remodel
is in the works, the outdoor ramp follows.

I took the “Use it or lose it…” as far as I could.
The rollator in the house served its purpose and the custom
wheel chair otherwise. As I said before the stair lift is good
but it is so damned slow… to me.

I’ve been told I just can’t take the risk of another fall, I now
have too much bone exposed (hips/legs) going from 230 lbs
down to now 168 lbs. I was 6’ now I’m 5’10.5 ??

Here’s a tip for others… I got tired of drilling new holes in my
belts, I’m now using bungie cords. Over these past few years
I’ve given relatives all my 38 pants and my 36 pants. The 34s
are loose but the bungie cords work. Shorts too. My shirts are
too big but I can live with that… they just tuck in further.

So… how are you other PALS doing?

 

[Nikki J]

Hi Al. Thanks for the update. Sorry to hear of your progression but glad you are staying safe

I am still walking. Sometimes with a rollator. I had a bad fall a while ago and was struggling but doing ok now. We have both been given slow progression but that doesn’t mean things are always easy. I am grateful though as I know some of our fellows are facing huge obstacles

 

[lisa g]

Well thanks for asking Al. Like you my progression is now in the upswing also. I've always said slow progression has its pros and cons. On the one hand I've been able to stay independent longer but on the other hand I've forged friendships with other PALS only to see them pass away.

I can still walk with my rollator but am finding that my balance is getting worse. I've had my PWC for a year and haven't had to use it. I'm thinking that I need to refamiliarize myself on how to use it so I can save some energy. I've had some falls in the past 2 requiring stitches. I've been extra careful not to have anymore.

I had a feeding tube placed 3 years ago before I actually needed it and am glad I did. My speech is now to the point of having to repeat myself so you can understand what I'm saying. I mainly use my feeding tube for my nutrition. My weight hasn't been an issue, I've been able to maintain it and am at the heaviest that I've ever been besides being pregnant.

I know that things are getting harder and am sad to put that extra burden on my husband. He keeps telling me that I need to fight this and stay with him as long as I can but this disease wears you down. Otherwise it's just another day in the world of ALS.

 

[missluuluu495]

My progression is also on the up swing. I had function of my right side, but it’s getting stiff and weak now. It’s hard not being able to move. I’m scared. I had a g-tube placed last year before I really needed it. But I’m having more difficulty eating and drinking, so I’m using it a lot more. I have caregivers to help me but they never stay. It’s really hard and scary to go through the process of getting a new caregiver. Recently a caregiver made me breathe in shampoo and I had difficulty breathing for a while and it was very scary. It seems now when ever water runs down my my face and I’m not prepared, I inhale through my nose involuntarily.

I wish I had the family support that I hear some of you have.

 

[Clearwater AL]

I’m pretty much in the same situation. Most of my famly
is down in Florida, most of my wife’s family is hours to
the south of us.

Our house is like a notch back in the woods, no neighbors
(houses) for hundreds of feet around ours. So, it’s not like
our neighbors are right next door. So, the ones we have
up the road, down the road and behind us are very friendly.
When we do visit or they visit it’s by car or golf cart.

One, much further down the road, is a full blown gun nut
we really don’t care for. Apparently has made a range on
his property. He fires off rounds day, night and holidays
and rapid fire. I am gun owner and I was a shooting range
safety officer down in Florida. We even had a problem
with stray rounds going out of the range on a rare
occasion. I hope one of his doesn't come our way.

Anyway, I’ve rambled on enough.

 

[KimT]

Hey All,

I'm still walking around the condo. If I go outside, I use my small PWC. I'm not strong enough to put it in the car but Fred or one of my friends can. I can still lift my walker into the car and my new thing is keeping it in the back and driving my little chair down to the car, leaving it in my parking spot (it's a covered garage with security) then venturing out and using the walker for short distances when I reach my destination. It's a pain in the A## but it feels good to drive places.

I had a bad fall and subsequent strain last Fall. I hurt my hip badly then pulled some muscles in the same area trying to lift something. I'm getting it scanned at my next Mayo appointment. They also want a repeat MRI of my knee and brain. They discovered a tumor in my brain last year and they want a repeat to make sure it isn't growing fast.

My breathing and swallowing are both pretty good. I still drive my PWC down to the swimming pool and get exercise most days. I'm more tired.

I don't have a lot of friends to help and no family. I can still cook as long as standing is minimized. My arms seem fairly strong. My left hand looks worse than it is. I can still type.

I always do better in hot weather. The sun gives my mood a huge boost.