Helping mum

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Darius

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May 9, 2020
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15
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CALS
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00/0000
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UK
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Mum's leg is starting to get quite bad, she can still just about make her way through our park walks with lots of bench stops, but I'm wondering what I should make a priority in case this relatively slow lack of progression hastens up.

My brother and I are trying to buy a house so she can move in with us, but it's proving difficult to find a suitable property that can be transformed (bedroom/washroom downstairs, etc) to adequately take care of her needs for the next few years.

We're in the UK, I've got her going with voice banking at home on her new laptop and this is giving her something to do when I'm not around (can't visit indoors because of COVID).

If there's any recommendations for things I should start getting in place, that'd be really helpful.

I've got a few questions, too.

1. She came off Riluzole as she got bad side effects and pain. I wondered if there were any positive effects of Metformin? Some people in the c9 group on Facebook recommended it.

2. If she's had quite a slow lower limb progression, when should we start actively sourcing the equipment she'll inevitably need? I believe those in the UK have it a little easier getting tech/equipment than those from US?

3. We sorted out internet for her in her current place, so she could watch Netflix and I think she's reading about the disease more. She's decided to take up a diet rich in protein, dairy and fruit. I've heard mixed things about too much protein and dairy. Is this type of low carb, high protein diet bad for MND? (I'm a big low carber/high protein guy myself, so I'm mutually interested in this answer given my fALS history - the data seems confusing).


That's all for now,
Best wishes,

Darius
 

Nikki J

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I think it is too early to know about metformin. It looked good in preclinical work. There is a patient study in progress in Florida. My neurologist prescribed it for me but I could not tolerate it. Worth asking about in my opinion.

it is good to get equipment ahead of time as soon as you can. Progression is not linear and you don’t know how things will happen. I think you should have a nurse or case worker in the UK? work with that person for equipment and maybe they have housing ideas too

the most important thing for her is to maintain weight. You are right that the data are confusing. There aren’t a lot of controlled studies. there was one with tube feeds comparing high carb with high fat and the high carb group did significantly better. You will find people who advocate very strongly for various things mostly without any rigorous science to back it up. She should eat to maintain weight and feel well and allow herself an occasional treat as well
 

affected

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I couldn't agree more - eat to maintain weight. That will vary depending on food preferences, allergies and tolerances. If what the PALS is eating keeps weight steady, do that!
 

PALSdottir

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Jul 18, 2020
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Loved one DX
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11/2019
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CA
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2. I read that since ALS is a progression, it's important to consider that multiple things will be used over the course of time and it's helpful to consider the things as tools not stages.

My dad can't use canes, walking sticks or walkers because he's lost more strength in his arms than his legs, but some people get these earlier. Regarding wheelchairs, manual ones can be borrowed or purchased more easily (local ALS clinics/organizations might have ones you could borrow, or so I've read) whereas power wheelchairs are definitely discussed and fitted and scheduled with physical therapists/doctors and the better thing to get insurance to cover. My mom is loath to get a wheelchair for my dad at the moment, but I've read that it's a good idea to get them at least a bit early so that the PALS can get used to it even for short durations. It seems to be one of those things that people may hold off on but when they do get them it's a relief from previous stresses of doing without.
 
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