Well on our 4th year

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pattyb

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Jun 2, 2011
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Loved one DX
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ny
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belleville
My brother is now starting his 4th year. He still walks with a walker, eats everything and dresses himself. Everything takes a lot longer but he refuses help unless its absolutely necessary. He still goes up the stairs using hand rails on both sides but because of another 2 step going to the bedroom without rails he does need help. He also uses a wheelchair when he leaves his home which he chooses not to do very often. I'm hoping when the nice weather starts he will get out a little more. Thank god it's slow but then again he doesn't always see this as a positive thing. He feels his life was over a few years ago when he stopped being him.
 
My PALS is going on 2.5 years! That was ur brothers condition at that point in time? Best Wishes!
 
I'm thinking now is the time when the hard part really begins. His wife still refuses to believe it and refuses dr appt or support groups so I do all of these things for him. I'm afraid the time is coming where he is going to need a lot of help and his wife is not going to be up for it. His house is not ready as we haven't found anyone to help with an addition or a bathroom. It's so expensive. I'm dreading this year for his sake
 
21/2 years ago he was walking with a cane but was able to do most of the things he needed to do. He drove his truck and mowed his yard. It's been slow.
 
Patty,

Thank you. For sending me hope!
 
Patty, We are also in year 4 since D X, However, he had onset 2 Yrs earlier. He just didn't go to doctor. He was doing good until a bad fall almost 2 yrs ago. A fall can really speed up progression.
 
He was doing good until a bad fall almost 2 yrs ago. A fall can really speed up progression.

Really? Tha's a bit scary .... has anyone else observerd this?!
 
I don't know if they fall will actually speed up the progression, or that you tend to ignore it for it while, and then it hits you in the face. Literally. So definitely be more careful because you can fall and break a hip, or break your nose, etc., and you can also fall out of your wheelchair.

I was diagnosed nearly 3 years ago now, and looking back at this was lucky that it's been slow progression, but it does seem to speed up every now and then. it seems that things stay the same for a while and all of a sudden you wake up then you can't do something that you could last week. Up until last year, I could go up and down the steps to my Victorian house. Now I can't stand up to pivot and turn. At some point in time, both your brother and his wife are going to need more help, and ignoring it isn't going to make it go away. Despite my tendency to ignore it myself, I just try to stay busy with things, try to think ahead and get equipment before I absolutely need it, so when I do need it, it's been sitting there in my living room for a while and I'm used to looking at it. I ordered my wheelchair last spring, but use the scooter until the fall when I couldn't stand up anymore. Now I use my wheelchair for everything.

So stay strong and optimistic look for clinical trials, and contact the ALSA and MDA groups in your area for help. They have loaner closets, social workers, ALS clinics, and more. And try to get them to come on the forum it really is a lifeline for many of us.

As a matter of fact, some of my forum friends have made plans to meet this month! I wish I could meet with them, but can't afford the travel...
 
I don't know if they fall will actually speed up the progression, or that you tend to ignore it for it while, and then it hits you in the face. Literally. So definitely be more careful because you can fall and break a hip, or break your nose, etc., and you can also fall out of your wheelchair.

I was diagnosed nearly 3 years ago now, and looking back at this was lucky that it's been slow progression, but it does seem to speed up every now and then. it seems that things stay the same for a while and all of a sudden you wake up then you can't do something that you could last week. Up until last year, I could go up and down the steps to my Victorian house. Now I can't stand up to pivot and turn. At some point in time, both your brother and his wife are going to need more help, and ignoring it isn't going to make it go away. Despite my tendency to ignore it myself, I just try to stay busy with things, try to think ahead and get equipment before I absolutely need it, so when I do need it, it's been sitting there in my living room for a while and I'm used to looking at it. I ordered my wheelchair last spring, but use the scooter until the fall when I couldn't stand up anymore. Now I use my wheelchair for everything.

So stay strong and optimistic look for clinical trials, and contact the ALSA and MDA groups in your area for help. They have loaner closets, social workers, ALS clinics, and more. And try to get them to come on the forum it really is a lifeline for many of us.

As a matter of fact, some of my forum friends have made plans to meet this month! I wish I could meet with them, but can't afford the travel...
I've been trying to talk him into ordering a wheelchair but he says he's not ready. I'm so hoping one day his wife will say okay I can do this but I don't think that will ever happen. He has done everything for her since they met. She's not use to having to be the one to help. Oh well I will just continue to do what I can for him.
 
Patty,

Thank you. For sending me hope!
Lets hope you are one of the lucky ones. You just have to be positive and hope. I know it's difficult but you never know when they could say hey we did it we found a cure.
 
He was doing good until a bad fall almost 2 yrs ago. A fall can really speed up progression.

Yeh, this one caught my eye also and it might not be that far-fetched. Traumatic brain injury can lead to an elevation of calcium in the central envious system, which is toxic to damaged motor neurons. So could a knock to the head from a bad fall, speed up progression? Possibly.
 
I hope I'm doing as well as your brother 4 years from now!
 
be pro-active. wake up some morning and can't walk, then what. i still walk but have fallen about six times, fracturing ribs twice, at als clinic yesterday started process for pwc. may take a few months but i want to be ready
 
If you've fallen one time, it's time to get your PWC. I broke my ankle and also did soft tissue injury to both ankles in Nov. this was a transfer injury. it was extremely painful to have my leg moved even with the space boot. Because I have ALS and the breathing concerns with anesthesia, I was not a candidate for surgery. Narcotic pain relievers and the ensuing immobility added additional problems. I do feel that my progression speeded up a bit during this time. I'd much rather have the equipment on hand and have to dust it off than have to wait for delivery. Some have had a ten month wait for delivery. It will really affect your independence if there is a protracted wait for deliVery.
 
Patty, your brother sounds like a candidate for a mobility scooter since he has slow progression. They are much cheaper than power chairs and will greatly extend his range and enjoyment while travelling outside. I went from a walker to scooters some years ago and still use them - a very small one (3 wheel Pride Go-Go) for inside and a larger one for outside. The small Go-Go is easily portable in any car and can be used at malls, restaurants, etc.
 
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