Old 11-25-2018, 12:23 AM #1 (permalink)
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Default 9 months past diagnosis

Hi all,

My partner was diagnosed w. ALS in February (201. He might have noticed the first signs in Oct. 2017 in his right foot.
He got a leg brace for drop foot. His right arm/had and foot/leg are very weak. Now he has significant pain in his right wrist. I got him a brace and it's best if he does not move his wrist.

His left side is rather weak too, not very far behind the right side but he can still hold a plastic fork or spoon in his left hand.

He is now using an electric wheelchair and needs it.

Eating and speaking is difficult and energy consuming too. He eat mostly soups, soft things like mashed potatoes and gravy, concentrates on swallowing, and pretty much only chooses food that goes down easily.
He is also losing his ability to taste food and his increasingly harder to understand.

We are thinking of remodeling a bathroom so that we can use it more easily with the wheelchair that as of now does not fit through the door.
Also, we are thinking of buying a car so that we can take him with the wheelchair to places.
His ALS seems to progress quite rapidly (for us?) and we are not sure if we would be spending quite a bit of money for things that he might be using 2-6 months (?) and then no more.

Any input on anything that I wrote here is very much appreciated. Is anybody in this group who has/had similar symptoms/progression and could share about what to expect in the next months and year(s)?

I have spent quite a long time reading around and hope this is a good thread for a first post.
Thanks a bunch,
Ina
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Old 11-25-2018, 12:51 AM #2 (permalink)
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Default Re: 9 months past diagnosis

Welcome, Ina, and sorry to hear about your partner.

It would be helpful to know more about where you live, to answer the car (van?) question. If you have access to public transit, it may not be worth it. I agree that his progression sounds rapid. If you pose some of these questions to his clinic team, and make it clear that you want them to be specific/frank, they can probably speak from experience and better documentation of his progression as to how long he could benefit.

Is the rest of the house accessible via the wheelchair? Will it work with a Hoyer lift and hospital bed? Is the bathroom you speak of the only one available to him?

I take it he's not a veteran?

Best,
Laurie
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Old 11-25-2018, 06:18 AM #3 (permalink)
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Default Re: 9 months past diagnosis

Very sorry to welcome you. I agree with Laurie that a frank discussion with his clinic might give some good advice.

His wishes factor in as well to prognosis. If he is planning a feeding tube and bipap the timeline may be longer than if not.

As Laurie hinted a van would be usable longer than a traditional car. It also makes me wonder is his electric wheelchair a traditional power chair which would need a van or something else more portable? A chair with tilt and recline and good support will likely be needed going forward.

Everyone progresses differently and he does seem on the faster side

Don’t hesitate to ask questions. We will do our best to answer
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Old 11-25-2018, 08:00 AM #4 (permalink)
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Default Re: 9 months past diagnosis

Hi again and thanks for the first replies. I really appreciate them!

Every time (4) we go to the ALS clinic we have been asking for a frank discussion - really - and all we get is 'that everyone's progression is different'. Believe me he and I have tried. I find this frustrating but it's the reality. Otherwise the team is rather nice. They also seem competent and very open to other questions, just not this one.

His wheelchair is a Permobile M3. Yes, I meant a van - a van that would allow for easy wheelchair transport. He is not a veteran - medicare paid for the wheelchair. We would use the van to get to the very few places where you can take walks w. a wheelchair. It's getting hard to get out of the car seat, especially as the right wrist is in quite some pain and can't be used right now.

We had to move to a different house this summer as stairs became too much of a problem. The new house now has ramps in the entrance areas and out to the deck and has 2 smallish bathrooms on the 1st floor.

It seems that ALS is always a few steps ahead of us and we are playing catch up to accommodate new needs. No plateaus. We had an OT (friend of mine) over and she was strongly recommending the adjustments to the bathroom w. the 24in. doorway - i.e. make the doorway wider, rip out the sink (which takes up much space) and install a wall mounted sink w.out cabinet underneath.

I guess I am not sure how much space a (hoyer) lift would need and if the present shower in 1 bathroom (longish and narrow) or the tub in the other (with the 24 in doorway) would work. The shower has an inbuilt marble seat in the corner and a lip...

I will stop here as this is already a pretty long post.

Thanks in advance,
Ina
P.S. not sure why there is a smiley face instead of an 8 (201 in my original post. In the edit field it was always an '8'.
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Old 11-25-2018, 09:28 AM #5 (permalink)
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Default Re: 9 months past diagnosis

Hi Ina,

You can also consider a commode chair, on wheels, which is more narrow than a wheelchair. He could transfer himself, or be Hoyer-lifted from bed or chair onto the commode chair and be moved through the bathroom door that way. Maybe you don't need door widened right away? My Mum's commode chair has been a boon. Your partner's situation sounds a lot like my mother's with regards to food, speech and movement, and is rapidly progressing. She's moving into a new apartment in my building, so we're just going to change out the sink so she can wash hands, face, brush teeth in the bathroom, from the commode chair (which slides right over the toilet). We were going to remodel the tub into a shower, but she's progressing so fast, it's just not worth it. The showers sort of suddenly and surprisingly are exhausting her now, and we're going to be moving toward bed baths, like they do in hospitals, which can keep a person really clean. I've started to do some of that for her, and it's a nice bonding time. She gets clean but she doesn't tucker herself out.

Are you in touch with the ALS Society in your community? They can loan you equipment to try out. They're super-helpful. An occupational therapist can suggest equipment or work-arounds and safety issues in your apartment. A contractor specializing in accessible homes can suggest modifications, like zero-clearance thresholds so the chairs and wheeled things move smoothly.

We've been using wheelchair accessible taxis. If you're in a town that has those, that's great too. My mother very quickly could not transfer into a car. It's really tricky. She had two very bad falls, while still ambulatory, trying to get into a car. We are getting a lot of taxi rides for the cost of WC accessible van.

Wish you and your partner well. I'm finding it pretty challenging to try to stay ahead of this illness, and the declines in function. These things work for us right now. A lot of changes since March when she was diagnosed.
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Old 11-25-2018, 10:47 AM #6 (permalink)
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Default Re: 9 months past diagnosis

I think the two things I would be concerned about are getting a feeding tube placed and how is his breathing. Is it time for BiPap? If breathing is still good, I would make a decision on the feeding tube now and, if he wants it, get it now. BiPap will improve quality of life, even if he elects not to get feeding tube. If he needs it and does not have it, using it will probably increase energy.

How large is he? That might be a deciding factor regarding widening the bathroom door as potty chairs come in different sizes. Either way, investing in a good potty chair that is comfortable and fits properly is a good idea.
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Old 11-25-2018, 01:45 PM #7 (permalink)
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Default Re: 9 months past diagnosis

I am sorry to welcome you here. The clinic staff can't enter into discussions with you on trying to predict anything about his progression rate because honestly no one can predict anything with ALS. The only predictable thing is how unpredictable this disease is! If a clinic started doing this they would be in all kinds of messes. In fact it is unprofessional of them to do so.

We say exactly the same when someone asks us here - there is just no way to know as there are so many variables and at the end of the day it is how fast the breathing is taken.

This really makes choices in these big matters difficult I know, and I get that. I really wish we could give some prediction model. I found that one of the most frustrating aspects of dealing with ALS in my own husband.

As Nikki says, if he is going for peg and bipap that could give him longer, but while these definitely increase quality of life, they don't always manage to lengthen life by any large amount.
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Old 11-25-2018, 05:46 PM #8 (permalink)
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Default Re: 9 months past diagnosis

Also sorry to have to welcome you here.

One of the hardest things for me has been not having a clear sense of the trajectory of my disease progression. We just know it is progressing. Itís hard to make plans.

It sounds like your partnerís progression is faster than mine. Iím also a drop foot onset.

You will want a wheelchair van so you can take him places. As far as the bathroomó you could probably make do with a rolling commode/ shower chair. Some people just use a bedside commode and have sponge baths.

It is nice to be able to take a full shower periodically and wash hair, etc. If thereís any way to get a roll-in shower, that would be ideal. The bottom line is there are various ways one can remodel a bathroom depending on budget.

Best of luck. Please come here often to ask questions.
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Old 11-30-2018, 12:02 PM #9 (permalink)
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Default Re: 9 months past diagnosis

Hi to all,
An update: We had an OT visit twice now. Our plans are to make the doorway wider - from 24 to 36 inches - and have a 'barn door' - just to save space. There is the possibility to make it even wider - up to 5 feet but then electricity and air vents would need to be relocated and we are hoping that 36in will be good enough.

We will replace the current sink so that the wheelchair can drive under it. We will probably invest in a reclinable shower buddy for over the bathtub. I hope that will help us out for a while and provide comfort.

Not much progress on my part on the van question yet except that I am doing more research about the local options. I have to keep at it as I was #7 in the queue when I tried and I did not have that much time to wait.

Breathing seems to be OK and we know that feeding tube is recommended (nutritionist and speech therapist seem to recommend it) but my partner's feelings about it are very ambiguous and he needs time to figure out what he wants. There has not been any weight loss (yet).

Thanks for all your shared experiences to my previous messages. To hear others is comforting in this sea of not-knowing.

Ina
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Old 11-30-2018, 01:04 PM #10 (permalink)
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Default Re: 9 months past diagnosis

Regarding vans — definitely cheaper to buy used. If you were to buy a new van and get it converted, that would be super spendy and could also take a few months.

There may be a company in or near your area that specializes in mobility systems and has access to used wheelchair vans or an inventory of used vans. The ALS care coordinator in your area may also be aware of who sells used vans.
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