questions.....

[cris]

Hi All....We have a couple of new challenges. Earl spends all day on his computer. He has gotten to the point to where he can barely move the mouse anymore. The question I have is, what do we get so that he can continue to use the computer? He's getting so very frustrated! He can still talk, but he's starting to struggle to make words. We have a microphone that will control the computer but, he's wearing his BiPap mask all the time so that doesn't work now.....


The other challenge is that his bottom(tail-bone) HURTS all the time. We have tried different pressures in the RoHo cushion, but nothing seems to help. The spot is very tender. The skin hasn't broken down..yet.


Any advise or help would be VERY appreciated. He's not sleeping well because of his bottom. He's very frustrated, because he used to be able to shift his weight around, but he has lost the strength in his arms to do that now. Not being able to work the computer isn't helping either. His neck is bothing him as well because of having to wear the mask all the time. We have a neck brace, just a foam one. It seems to help...some. No one is getting much sleep because of the issues. I guess you could say we are all getting to the end of our ropes with each other.


Thank You for listening, and any advise you can give!:?:-(

 

[GlenBrittle]

Ouch , I hope that Earl can get the sores under control.

I have moved away from a mouse to a trackball. Do not need to move my arm much at all. If he can still use a finger and a thumb , it might be something to look into.

I was told by my doc to lie on my side to help give my back a rest (very sore and swollen at sacrum). I think that should apply to Earl , to help promote a little bit of healing.

Its not much , hope it helps.
Glen

 

[DgtofTNfan]

I am not sure how all this works as Dad had just had his wheelchair a short time and his Dynavox was on order when he passed away but his power chair was a tilt in space designed to provide pressure relief. His Dynavox was to have a mount bar for the wheelchair and the tech was going to set it up so that Dad could toggle and/or click (this was a separate attachment) through the Dynavox functions once he was unable to type. Also the Dynavox had Windows/Internet Explorer capabilities so that Dad could have used the Dynavox as he would a computer.

Assuming all that worked together as planned, he should have been able to use the tilt function of the power seat to vary pressure relief throughout the day and still have access to his computer functions.

I am not sure where you guys are in the equipment continuum but thought I would mention it.

Also does he have a specialty mattress on his bed? Dad had the Roho Prodigy mattress and said it really helped his bottom. It was hard for him to sleep on his side wearing the bipap and found the specialty mattress allowed for him to shift to his side at a smaller angle to get relief on his bottom.

 

[cris]

Thanks guys! Earl can't lie on his side..and he does have an alt. air mattress on the bed. We didn't know wheelchairs come w/ tilt options when we ordered this one (no tilt).

Glen will try the trackball.

 

[BrianD]

And a head mouse might be an option too... depending on how well he can control his head movements.

Joel has some great info on computer use here: Computer - using it

 

[mare]

Oh, Cris- (big sigh)

So sorry, no advice, just a big hug!

 

[cris]

Thank you all for the ideas. Will give them to Earl and pray something helps.

 

[mare]

Cris-

Not sure if this would really be a viable solution, just putting it out there.

I just received a catalogue in the mail and it has a cushion that reduces "pressure on the spine". I have seen this before, in many catalogues, as well as medical online sites.

The only question I would have is if it compromises the ROHO cushion he has on his chair. Take a look & see what you think. I have seen these used for patients (many elderly) for the exact problem Earl has; but admittedly not as a complication of ALS.

You can look at it here & see if you think it would work. Search elsewhere for better price. Although, I find medical supply specific can be more costly.

shop [email protected] The item # is: 072049 Seat Support Cushion $24

Trying to help you find a solution for his sore bum.:-(