Update on my visit to my sister and a new question

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Belen

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I posted over a month ago and got very helpful advice. I wanted to thank all who replied once again. I spent a wonderful week with my sister. I have to admit there were tears but there was also a lot of laughter. My sister's spirits lifted and we went out for a walk every day to her favorite hangout spots.
We used a manual communication device when I couldn't figure out what she was trying to convey. It was slow at times but we muddled through!
Her new eye movement communication system is getting installed on her computer on Monday. The whole process has been a little frustrating to say the least. It has been on going for two months now and they still don't have everything figured out! The main issue is that she will need to have the computer at an angle because she finds sitting very tiring. As things stand, basically she will be limited to using the system when someone is there to hold the computer at the right angle for her. Very restrictive. I want her to be able to have unrestricted access.
They thought of installing either a bar or a ceiling system but both plans have drawbacks and nothing has been done yet. The speech therapist in charge doesn't seem to know how to proceed. Any ideas?
 

Nikki J

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I am glad you had a good visit. There are absolutely mounts and stands that can be positioned at various angles.

You say she finds sitting tiring? So where will she be when she is using the eyegaze? In a bed? Does she have a tilt wheelchair? My sister could not sit upright but spent almost all day ( just had a nap in the afternoon) in her wheelchair tilted the tilt would be adjusted periodically. If you let us know where she will be we can suggest specific mounting systems
 

lgelb

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Glad to hear it was a good visit! I am sure it meant the world to your sister.

What size/type of monitor are we talking about? I am sure there is a better answer. What system is she getting? Is she in a power chair and is she leveraging the tilt/recline functions and a cervical collar if needed to create a comfortable position?
 

Belen

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She spends most of her day in bed. When I was visiting, she felt with enough energy to get up and onto her wheelchair so that we could go out for walks. After a couple of hours, she was ready to get back to bed. She has a power chair but I don't think it has tilting. I don't have the details about the computer or the communication system either. I will ask my sister in law, but we have a nine hour time difference so I may not get a response for a while.
 

Belen

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One of the concerns with the ceiling installation is that they can't find the right brackets. The horizontal bar system apparently interferes with the system used to get her in and out of bed. I am sure there are other solutions. I just don't understand why the O.T, Speech therapist and the orthopedist have not been able to figure it out yet.
 

wishmobbing

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I'm glad you had a good visit with your sister! This probably felt like a real vacation to your sister.

What kind of computer are they not trying hard enought to get mounted? A tablet? There are even mounts for power wheelchairs.
Maybe the reason why so many people haven't figured it out is because the responsibilies get a bit lost between the three of them. The orthopedist seems the most promisind to me (my PALS speech therapist wasn't to tech-savy even in regards to checking her phone for texts ;). Maybe the one delivering technology should be made responsible to get it to work.
 

Narrowminded

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My husband spends his life 24/7 in bed. He has a rolling mount that it’s feet roll under the bed and the top arm across the bed. We can raise or lower the top arm and tilt the computer in just about any way imagineable. They are very easy to find and generally to company supplying the computer, also supplies the stand. And I would check with the ALSA in your area as they may have a stand in the loner closet. Ours did. We used it with a loaner computer prior to DH getting his own.

Hugs,

Sue
 

Belen

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I'm glad you had a good visit with your sister! This probably felt like a real vacation to your sister.

What kind of computer are they not trying hard enought to get mounted? A tablet? There are even mounts for power wheelchairs.
Maybe the reason why so many people haven't figured it out is because the responsibilies get a bit lost between the three of them. The orthopedist seems the most promisind to me (my PALS speech therapist wasn't to tech-savy even in regards to checking her phone for texts ;). Maybe the one delivering technology should be made responsible to get it to work.
I believe you may be onto something regarding responsibilities. I will contact the orthopedist to see what is going on.
 

Belen

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My husband spends his life 24/7 in bed. He has a rolling mount that it’s feet roll under the bed and the top arm across the bed. We can raise or lower the top arm and tilt the computer in just about any way imagineable. They are very easy to find and generally to company supplying the computer, also supplies the stand. And I would check with the ALSA in your area as they may have a stand in the loner closet. Ours did. We used it with a loaner computer prior to DH getting his own.

Hugs,

Sue
I will suggest a rolling mount. My sister is not in the US, but I think it's a good idea to contact her local ALS association.
 

wishmobbing

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If you would reveal your sisters general locations there'd be a chance that someone in this forum knows more. Systems vary hugely and between the lot of us there's some serious health knowledge to be harvested.

Very cool of you to remote access your sister's situation.
 

lgelb

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Sue and the others are right, between a rolling mount or table for the bed and a secondary stand or mount if needed for the device or monitor, to tweak the angle/height, there is no reason your sister cannot be accommodated. It really shouldn't take professionals to do this.

Still, if there is a way to transfer her out of bed to her power wheelchair, changing position and of course being able to get outside may make a difference as well.
 

Belen

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If you would reveal your sisters general locations there'd be a chance that someone in this forum knows more. Systems vary hugely and between the lot of us there's some serious health knowledge to be harvested.

Very cool of you to remote access your sister's situation.
Sure! If there is anybody with local knowledge of ALS in Madrid, Spain, that would be great!
I am only trying to help in the very limited way that I can from afar. It is pretty frustrating not being able to be there myself.
 

whereswaldo

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Another possibility is to contact your local ALSA office in San Diego and the right person with long arms may be able to find someone to contact in Spain. If no one here comes up with some help or idea.

Did a quick search and The University Hospital La Paz in Madrid that has a ALS dept that might be able to help.
 

lgelb

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ENCALS lists these centers in Spain:

ALS/MND Unit of the University Hospital of Bellvitge – Miquel Valls Foundation Centres

ALS Clinic – Hospital de Basurto , Bilbao, The Basque Country. Spain

Instituto de Investigación Sanitaria Hospital 12 de Octubre

ALS Unit, Neurology Department, Hospital Universitari i Politècnic La Fe

ALS Unit at Hospital Carlos III, Madrid
 
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