Old 09-14-2018, 08:40 AM #1 (permalink)
Jrzygrl's Avatar
Member
 
Join Date: 2017
City: Pretty Much
State: Nowhere
Country: US
Diagnosed: 08/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 332
Jrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of light
Jrzygrl Jrzygrl is offline
Member
Jrzygrl's Avatar
Join Date: 2017
City: Pretty Much
State: Nowhere
Country: US
Diagnosed: 08/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 332
Jrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of light
Default Well, that didn't go as planned...

DH had his long awaited (3 months) wheelchair mods done yesterday. He got elbow blocks and arm supports, lateral supports, and a new headrest. He is not happy with most of them. Says they restrict his movement too much. He says he wants me to take them all off and go back to what he had, but I am trying to get him to live and work with them for a few days before giving up. He tends to have an all-or-nothing approach. It doesn't work, just get rid of it rather than try to figure things out. ARHG!!!!!

Just shot off an email to the PT and wheelchair tech from clinic asking to meet with them to try to work things out. We had been scheduled for clinic this coming Tuesday, but due to the Dr being out of town, had to be moved back to November. The PT is usually very responsive, so I'm hoping to hear back from her soon.

Me on the other hand - well my varicose veins have decided to act up. I've had problems with them forever, a combination of unlucky genetics and being overweight. Tuesday when the aide was here, I was putting on my shoes, when out of the blue, blood started spurting out of my leg. Picture if you stuck a pin in a water balloon. Yikes! I got it to stop and went to the Dr. Apparently this happens sometimes with varicose veins and they recommended I see a vascular surgeon to see what can be done. So this coming Tuesday, I have an appointment to be seen. And people wonder what I do on my "day off" when the aide comes. Of course, this is also all happening 2 weeks before my weekend away that I finally got covered and am really looking forward to. Fingers crossed they can get this figured out!

DH is calling me to get up. La, la, la, life goes on!
Jrzygrl is offline   Reply With QuoteReply With Quote
Old 09-14-2018, 11:07 AM #2 (permalink)
lgelb's Avatar
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,113
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 6,113
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Well, that didn't go as planned...

Oh, Jersey. Take care of yourself.

There are many ways to position the postural supports, fore, aft, left, right, and at different angles. Sometimes having just a left or right is best. Definitely starting from where he doesn't like it and trying "what-ifs" is the way to go.
lgelb is offline   Reply With QuoteReply With Quote
Thanks from
Jrzygrl (09-14-2018)
Old 09-14-2018, 06:13 PM #3 (permalink)
Very Helpful Member
 
Join Date: 2016
City: Pittsburgh
State: PA
Country: US
Diagnosed: 07/2007
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,814
Narrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant future
Narrowminded Narrowminded is offline
Very Helpful Member
Join Date: 2016
City: Pittsburgh
State: PA
Country: US
Diagnosed: 07/2007
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,814
Narrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant future
Default Re: Well, that didn't go as planned...

Jrzygrl - I find my Brian can be very set in his ways when it comes to changes, like on the WC. Asking him to give it time, usually helps.

So sorry about your leg. Praying it doesn’t interfere with your time away.

Hugs
Narrowminded is offline   Reply With QuoteReply With Quote
Thanks from
Jrzygrl (09-14-2018)
Old 09-15-2018, 10:40 AM #4 (permalink)
Jrzygrl's Avatar
Member
 
Join Date: 2017
City: Pretty Much
State: Nowhere
Country: US
Diagnosed: 08/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 332
Jrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of light
Jrzygrl Jrzygrl is offline
Member
Jrzygrl's Avatar
Join Date: 2017
City: Pretty Much
State: Nowhere
Country: US
Diagnosed: 08/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 332
Jrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of light
Default Re: Well, that didn't go as planned...

So yesterday was frustrating, and today is continuing in that direction, if not going downhill. He had me remove the lateral supports and also wants the arm supports removed. I adjusted the headrest multiple times. He's complaining about the elbow blocks. He's angry that all the mods aren't doing what he wants, but is not willing to try to adjust. I'm online searching the Permobil manual to try to find anything that will help. Have not heard back from the PT yet.

UGH.
Jrzygrl is offline   Reply With QuoteReply With Quote
Old 09-15-2018, 11:16 AM #5 (permalink)
Very Helpful Member
 
Join Date: 2016
City: Pittsburgh
State: PA
Country: US
Diagnosed: 07/2007
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,814
Narrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant future
Narrowminded Narrowminded is offline
Very Helpful Member
Join Date: 2016
City: Pittsburgh
State: PA
Country: US
Diagnosed: 07/2007
Interest: I am a caregiver for someone with ALS/MND.
Posts: 1,814
Narrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant futureNarrowminded has a brilliant future
Default Re: Well, that didn't go as planned...

Hugs Jrzygrl - praying you hear quickly from the PT. We are very fortunate to have a very good WC guy who measures and orders changes and is very good at making the adjustments too. See if your PT can recommend someone.
Narrowminded is offline   Reply With QuoteReply With Quote
Thanks from
Jrzygrl (09-15-2018)
Old 09-15-2018, 12:07 PM #6 (permalink)
Jrzygrl's Avatar
Member
 
Join Date: 2017
City: Pretty Much
State: Nowhere
Country: US
Diagnosed: 08/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 332
Jrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of light
Jrzygrl Jrzygrl is offline
Member
Jrzygrl's Avatar
Join Date: 2017
City: Pretty Much
State: Nowhere
Country: US
Diagnosed: 08/2014
Interest: I am a caregiver for someone with ALS/MND.
Posts: 332
Jrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of lightJrzygrl is a glorious beacon of light
Default Re: Well, that didn't go as planned...

Thanks, Sue.

I wish there was a way to try out these mods first, but I know that's next to impossible. Or a way to get them installed, then have a return service call in a few days to make adjustments. For now, I guess I need to learn to be a wheelchair mechanic. And a big dose of patience.
Jrzygrl is offline   Reply With QuoteReply With Quote
Old 09-15-2018, 01:17 PM #7 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,872
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is online now
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 10,872
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Well, that didn't go as planned...

I am sorry it all comes down to you. For anything like this our OT always figured, measured, ordered then came and fitted, adjusted and taught us both what and how.

So any problems were not just dumped on me, and were being handled by someone trained in al lthis.

I hope your PT gets back to you and can work with him xx
affected is online now   Reply With QuoteReply With Quote
Thanks from
Jrzygrl (09-15-2018)
Reply

Tags
arm, back, clinic, fingers, life, movement, problems, wheelchair, work


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
I didn't know what I didn't know pdcraig Current Caregivers (CALS) 19 02-28-2017 08:21 AM
I almost didn't go...... DreamsEnd Past Caregivers (CALS) 7 01-29-2016 07:32 AM
This really didn't suprise me AKmom General Discussion About PLS 6 01-13-2015 10:09 PM
Didn't want to be 'that guy' Energy1 Do I Have ALS? Is This ALS? 22 04-04-2014 05:14 AM
The V.A. Didn't Forget After All! Zaphoon General Discussion About PLS 4 09-01-2010 11:10 PM


All times are GMT -5. The time now is 03:58 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