Progression.... ?

[Romeosc]

I was diagnosed Thanksgiving 2017.

Most problem with balance and gait. Walking with rollator walker. They say the problem began in hips. I have great difficulty rolling over or getting out of bed without pulling myself up with a rail! Once I pull myself to sitting position, I can use rail to stand and use walker. I weigh 285 pounds and don't want to hurt my wife's back pulling me up!

We have order a hospital bed, since new sleep number bed didn't solve problem!

I know everyone progresses at different rates, I have started home infusion of Radicava and hope to maintain some ability to get up and go to bathroom in middle of night.

I was interested in others experiences...

Also trying to be discrete, but my genitals have shrunk making urination messy. I didn't know that muscle was affected.

I'd like to stay with some independence as long as possible.

Thanks for any help

 

[GregK]

Ah, well, welcome... But ALS doesn't shrink your 'nads, so I'd certainly take that up with your doctor!

 

[Romeosc]

Not "nads" P....s

Maybe because of staining to stand....

 

[GregK]

I knew what ya meant, lad! ;-)

The answer stands (no pun intended!), tho

 

[Pecksco]

Mine shrunk too. I have to use a p-cup and if the turtle will not come out ...it's hard to point.

 

[Romeosc]

Pecksco : some recommended :

Mod Note: link to commercial site deleted.
Product name: 10 -Pack Condom Catheter 28mm Freedom Clear Advantage Aloe Vera Adhesive

Haven't needed yet.... but may need someday

 

[Romeosc]

Thanks GregK
Didn't know I couldn't show link to product