Old 01-12-2018, 10:26 PM #1 (permalink)
Romeosc's Avatar
Member
 
Join Date: 2018
City: Memphis
State: TN
Country: US
Diagnosed: 11/2017
Interest: I have been diagnosed with ALS.
Posts: 129
Romeosc is on a very distinguished road
Romeosc Romeosc is offline
Member
Romeosc's Avatar
Join Date: 2018
City: Memphis
State: TN
Country: US
Diagnosed: 11/2017
Interest: I have been diagnosed with ALS.
Posts: 129
Romeosc is on a very distinguished road
Default Progression.... ?

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
Romeosc is offline  
Old 01-12-2018, 10:31 PM #2 (permalink)
GregK's Avatar
Very Helpful Member
Forum Moderator
 
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,718
GregK has disabled reputation
♥ GregK GregK is offline
Very Helpful Member
Forum Moderator

GregK's Avatar
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,718
GregK has disabled reputation
Default Re: Progression.... ?

Ah, well, welcome... But ALS doesn't shrink your 'nads, so I'd certainly take that up with your doctor!
GregK is offline  
Old 01-12-2018, 10:39 PM #3 (permalink)
Romeosc's Avatar
Member
 
Join Date: 2018
City: Memphis
State: TN
Country: US
Diagnosed: 11/2017
Interest: I have been diagnosed with ALS.
Posts: 129
Romeosc is on a very distinguished road
Romeosc Romeosc is offline
Member
Romeosc's Avatar
Join Date: 2018
City: Memphis
State: TN
Country: US
Diagnosed: 11/2017
Interest: I have been diagnosed with ALS.
Posts: 129
Romeosc is on a very distinguished road
Default Re: Progression.... ?

Not "nads" P....s

Maybe because of staining to stand....
Romeosc is offline  
Old 01-12-2018, 10:53 PM #4 (permalink)
GregK's Avatar
Very Helpful Member
Forum Moderator
 
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,718
GregK has disabled reputation
♥ GregK GregK is offline
Very Helpful Member
Forum Moderator

GregK's Avatar
Join Date: 2013
City: Colorado Springs
State: CO
Country: US
Diagnosed: 11/2012
Interest: I have been diagnosed with ALS.
Posts: 2,718
GregK has disabled reputation
Default Re: Progression.... ?

I knew what ya meant, lad!

The answer stands (no pun intended!), tho
GregK is offline  
Old 02-07-2018, 01:57 PM #5 (permalink)
New Member
 
Join Date: 2015
City: New Orleans
State: LA
Country: US
Diagnosed: 03/2015
Interest: I have been diagnosed with ALS.
Posts: 21
Pecksco has disabled reputation
Pecksco Pecksco is offline
New Member

Join Date: 2015
City: New Orleans
State: LA
Country: US
Diagnosed: 03/2015
Interest: I have been diagnosed with ALS.
Posts: 21
Pecksco has disabled reputation
Default Re: Progression.... ?

Mine shrunk too. I have to use a p-cup and if the turtle will not come out ...it's hard to point.
Pecksco is offline  
Thanks from
Romeosc (02-07-2018)
Old 02-07-2018, 05:20 PM #6 (permalink)
Romeosc's Avatar
Member
 
Join Date: 2018
City: Memphis
State: TN
Country: US
Diagnosed: 11/2017
Interest: I have been diagnosed with ALS.
Posts: 129
Romeosc is on a very distinguished road
Romeosc Romeosc is offline
Member
Romeosc's Avatar
Join Date: 2018
City: Memphis
State: TN
Country: US
Diagnosed: 11/2017
Interest: I have been diagnosed with ALS.
Posts: 129
Romeosc is on a very distinguished road
Default Re: Progression.... ?

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

Last edited by GregK : 02-08-2018 at 12:17 AM
Romeosc is offline  
Old 02-08-2018, 11:03 AM #7 (permalink)
Romeosc's Avatar
Member
 
Join Date: 2018
City: Memphis
State: TN
Country: US
Diagnosed: 11/2017
Interest: I have been diagnosed with ALS.
Posts: 129
Romeosc is on a very distinguished road
Romeosc Romeosc is offline
Member
Romeosc's Avatar
Join Date: 2018
City: Memphis
State: TN
Country: US
Diagnosed: 11/2017
Interest: I have been diagnosed with ALS.
Posts: 129
Romeosc is on a very distinguished road
Default Re: Progression.... ?

Thanks GregK
Didn't know I couldn't show link to product
Romeosc is offline  
Closed Thread

Tags
ability, back, balance, bed, diagnosed, hope, muscle, night, problem, progression, radicava, sleep, walker


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Changes and progression Erika Current Caregivers (CALS) 3 08-16-2017 07:53 PM
Progression anitadeanne Do I Have ALS? Is This ALS? 0 04-06-2016 02:11 PM
What's next in the progression? hopeangel66 People With ALS - "PALS" 25 11-08-2012 01:13 AM
Progression brayden722 General Discussion About PLS 9 08-12-2010 09:45 AM
Progression of ALS Alastair Dunwoody People With ALS - "PALS" 9 11-10-2008 10:54 AM


All times are GMT -5. The time now is 02:22 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016