Doctor's Visit?

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sarah

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My husband went to his regular 3 month doctor visit today. He has a hard time sitting up for to long, and we were at the doc's for 1 1/2 hours. We almost left because chris was getting to sore sitting in his wheel chair. My question is, what will happen when he cannot sit in his wheelchair any longer? He is almost getting to that point. He has to see the doc, but if we have no way of getting him there what do we do? Just wondering if anyone had experience in this situation?
Sarah
 

Icanmanz

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sarah said:
My husband went to his regular 3 month doctor visit today. He has a hard time sitting up for to long, and we were at the doc's for 1 1/2 hours. We almost left because chris was getting to sore sitting in his wheel chair. My question is, what will happen when he cannot sit in his wheelchair any longer? He is almost getting to that point. He has to see the doc, but if we have no way of getting him there what do we do? Just wondering if anyone had experience in this situation?
Sarah


Hi, Sarah! Sorry to hear about your husband. May God give you the strength to care for him. Okay, this is what Hospice told me when my son was too weak to get up. First let me tell you that my son passed 15 mpnths after diagnosed, He was diagnosed in March 29, 2006, and he was gone by June 3, 2007. It was such a sad experience for me, and the family. I am having a hard time typing right now, because every time when I think or talk about it, it just tears me up. I just don't know why these terrible things happen. When my son told me what the doctor had told him after diagnosed, it almost killed me. I could not believe what I was hearing. My mind blacked out for a few seconds , then I lost it, I lost it completely. My husband had a hard time holding me down. I wanted to run out of the house. Getting in my car, and taking off occurred to me. Then I stopped for a second, and thought about my ailing son, I thought to myself, "He needs me!" I was devastated. I fell into a deep, deep depression. I even started having strange dreams. It was my son that cal,ed me down. He told me to please remain calm. He told me he was alright with it, and that he was not afraid, but hey, we are all human. I know he told me that so I wouldn't worry, but I did worry, a whole lot. I miss my baby so much. There isn't a day that goes by,, that I don't think about him. I think about him ALL THE TIME!

Okay, let me tell you what hospice said. When these folks get too weak to get around they will send a doc to the house to see him. That's what I was told. My babt did not live long enough to be seen by hospice. They came by my house on June 2, 2007, and the following evening my son passed. Talking about a big heart break! My baby he is in heaven! I must quit, because it hurts so. May God bless you nicw folks, and I will say a prayer for all you guys on this forum, every night! God bless!

xoxoxo,
Irma
 

landscape

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Could you tell us a bit more about your husband's chair, Sarah? Is it a power chair and if so does it have tilt and recline? What kind of cushion do you have in the chair?

My husband has a TDX5 with tilt (which is helpful because his neck is affected and this allows him a better field of vision) and recline (which is much more comfortable for his back). The seating system is from Amysystems.

He also has a RoHo cushion (a Quattro version) which is air filled and can be adjusted to suit weight and posture. He is comfortable in this wheelchair--our last clinic we left the house at 1:00pm and didn't get home until 6:30pm and he was fine.

Everyone with ALS is different and their needs can be met with the help of the professionals that have the skills to prescribe a chair and cushion that suit the individual.
 

sarah

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my husband has the basic wheel chair, nothing fancy to it. It is not a powered wheel chair. I used a two inch foam custion this last time, that seemed to help a little. It sat him up a little better, which made his legs not stretch out as much.
Also, he can not be reclined in any chair. If his head is slightly back at all he can not swallow and starts to choke. When he is wearing his neckbrace, I have to loosen it a little so his head leans foward a little. I think the most discomfort for him is his not enough support for his head. We go through hospice and they have brought by a couple of things to try but nothing is working. I just don't think there is anything we can do about it.
I am going to work on a couple of ideas to help keep his head supported on my own. The hospice here has not really helped out much.
He has a scooter that works great, but I have no way of bringing it into town with us. I have to steer the scooter but he can sit in that for a while with out being uncomfortable. The bad thing about the scooter is that it is to big to fit in the doc's office, so that wouldn't work either. AHHH! So frustrating!\

Sarah
 

CindyM

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Hi Sarah, its always a challenge, isn't it? I am sorry this is happening to you and your family. On top of raising a young child (is it one child?) you have a lot on your plate right now. I hope you can solve the sitting issue soon. Best regards, Cindy
 

landscape

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It sounds to me as if you are doing an excellent job, Sarah! But it also seems as if you could really use the help of an OT and also the ALS Society. Since I do not know how things work in Oregon . . . or the USA for that matter . . . I wonder if there is anyone from Oregon who could offer some direction.

Your husband needs a much better cushion and--in my opinion--a better chair. It's basic preventative medicine! However there are many factors to consider: can you get it into the house, can you get it into your car/van etc etc.

A chair doesn't have to recline but it should offer good trunkal support. And it does need to be properly prescribed by a rehab. professional who is thoroughly familiar with chairs, ALS, funding and your home situation.

That's my two bits worth anyway!
 

Citlalli

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Hi Sarah,

It seems your husband needs a new system for going out.

When Andres´"going out chair" ( the manual one that would fit easiest in the car) got to uncomfortable we got one that had a high back and that reclined a bit. That helped a little but he still was much more comfortable on his power chair and since it fit in the car although was a hassle to disassemble eveery time and that was getting uncomfortable too we decided he needed a tilt and recline chair. and a van , because he was very uncomfortable in our car, and it was hel on my back. So that is when we had tha big fundraiser for chair and van. You can get used vans and chais pretty cheap. And know that people are most glad to help.

Anyway. It gets to the point when things no longer work and you need to upgrade that is just the way it is. We first tried a gel cushion and high back that was really good, the neck support Andres still uses is from there. He got the wedge cushion. higher in the front than in the back, it prevents sliding.

http://www.comfortcompany.com/cart/home.php?xid=63802425c4171320da74eba21f4be4ad

CUrrently he is using an alternating pressure air cushion we got as a bonus with the chair ( though the darn thing is acting up and wont work correctly today)

He now has a tilt and recline chair. He cannot recline very much for the same reason of choking on saliva but being able to adjust the back a little gives him much relief. We lined the back of his chair and armrests with sheepskin, the real one , not the kind they sell at that website that are synthetic and stupidly expensive. We just got a sheepskin and cut it up.

About saliva.

Andres wears a square yoghurt container, fastened around his neck with a shoelace to catch his saliva so he doesn't have to struggle with swallowng so he cannot use neck brace but having the neck support that allows the neck to bend forward helps him to spit. He tried aamytriptiline but it drugged him. he doesn't like medication anyway, he is very into awareness.

I know it sounds kind of awful but isn't it all? this has been one of the greatest inventions (by Andres)

I am going to try and post a picture if it is possible so you see what I am talking about.
 
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