Mary2
Senior member
- Joined
- May 1, 2021
- Messages
- 711
- Reason
- Lost a loved one
- Diagnosis
- 04/2021
- Country
- US
- State
- GA
Robin, My heart goes out to you and your family. I am so glad your husband understands you are with him. I will be thinking about you and your husband over the next little while.
rmt
Distinguished member
- Joined
- Sep 18, 2019
- Messages
- 379
- Reason
- Lost a loved one
- Diagnosis
- 07/2019
- Country
- US
- State
- WA
- City
- Seattle
Thank you all for your support. My husband continues to prove how amazing he is. I thought he was going to pass in the ICU or in the transport ambulance, but he survived coming home today! He is on hospice and seems very happy to be home. We watched baseball together in the living room all evening while holding hands! I thought we would never get to do that again so it feels like a miracle! This bonus time together is so wonderful. He mostly sleeps and is exhibiting many of the end of life changes, but he is comfortable and relaxed. I still can't believe we are at this point. I am in a total daze but I'm trying to lock all of these special memories into my brain.
- Joined
- May 7, 2017
- Messages
- 1,884
- Reason
- Lost a loved one
- Diagnosis
- 05/2017
- Country
- CA
- State
- AB
- City
- CALGARY
I'm so sorry, R. My thoughts are with you during this time. What a wonderful and dedicated caregiver you have been 
Mary2
Senior member
- Joined
- May 1, 2021
- Messages
- 711
- Reason
- Lost a loved one
- Diagnosis
- 04/2021
- Country
- US
- State
- GA
What would be better for me and PALS, head controls....would those be easier for me to use than the present controls or an app called I drive that I understand goes on the eye gaze and enables him to tilt the wc on his own. Can these 2 be used together? We are waiting to hear if the eye gaze has been approved for PALS. It has been a month, so we could hear at any time.
- Joined
- Nov 5, 2009
- Messages
- 14,265
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
- State
- WA
- City
- Seattle
Head control is for him, not you. How well it works depends on what muscles he can use. I would have a "try before buy" approach for anything new at this point.
If he has not been using eye gaze, it can be a lot to control the wheelchair with it, so if he gets it, I would also keep the attendant control or regular joystick. What are you currently using?
If he has not been using eye gaze, it can be a lot to control the wheelchair with it, so if he gets it, I would also keep the attendant control or regular joystick. What are you currently using?
Mary2
Senior member
- Joined
- May 1, 2021
- Messages
- 711
- Reason
- Lost a loved one
- Diagnosis
- 04/2021
- Country
- US
- State
- GA
PALS currently has a regular joy stick but he is asking for more and more help with it. The wheel chair sales rep believes the app is better for ALS patients than the head control. He is quite busy, and not easy to pin down over the phone for questions. Our hall is narrow and for me to use the joy stick I have to go half way down the hall then walk around the "block" to the front of the wheel chair.
Where does the attendant control go? Does Medicare pay for an attendant control?
Where does the attendant control go? Does Medicare pay for an attendant control?
Jrzygrl
Senior member
- Joined
- Feb 14, 2017
- Messages
- 751
- Reason
- Lost a loved one
- Diagnosis
- 08/2014
- Country
- US
- State
- NJ
- City
- X
My husband used a head controller. I had the wheelchair rep put the joystick in the back for me. He reversed the controls (so me pushing fwd on the stick would propel the chair fwd, unlike when DH pulled on it to go fwd, if that makes sense.) I do know it was harder for him to have fine control over the chair using the head controller. For the most part, he was fine, but there were situations where it was easier for me to move him. I ended taking over maneuvering into and out of the van after a several frustrating attempts by him. I would back him up the ramp, then be able to position him up front, as he usually preferred. I'd then back him up, turn and exit the van with him facing forward. He did like the autonomy of being able to control the chair by himself, though. Anything to give him some control.
- Joined
- May 29, 2014
- Messages
- 1,013
- Reason
- Lost a loved one
- Diagnosis
- 04/2014
- Country
- US
- State
- VA
- City
- Poquoson
I had a controller at the back of Darcey's PWC that matched the controls of her front hand controller. I used it when I drove. It was particularly useful when I'd have to back her into the van and for positioning her into the front passenger area when we traveled. I know people manage with just the front one... but this was so much more convenient, easy and safe!
My best...
Jim
My best...
Jim
