Darius
Member
- Joined
- May 9, 2020
- Messages
- 19
- Reason
- CALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- LN
- City
- MCR
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
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