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If walking is an issue do we use mobility aids ?

Rufous McKinney

Senior Member
Messages
13,249
I suppose some 'always been healthy' people can't understand invisible illnesses.

Maybe we need to make T-shirts with Sayings On them, or ball caps.

Disclosures.

"Its Neurological"...that might be a good one.

"Orthostatic Intolerance Joy"

"I Fall Over Easily, do You?"

"Eppstein Barr Ate my Collagen"

Or: for more recent new recruits: "COVID GOT ME"
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
I'm.loathe to say this but my pride seems to be lowering ..
I can't walk more than my house or I crash ...
I can't live my life in my house solely .
Even going to the park I need to walk a little to get to the grass etc .. then if I need the toilet .

I've been churning over in my head the different options ... Wheelchair , mobility scooter , sit down e scooter .
The thing is I live on a hill so really too much risk of the vehicle not making it and me needing to push / walk.

I then thought of a wheelchair someone could push me out for a walk ..
Oh I dunno ...

Thoughts / experience ?

I have a cane and grips in the bathtub that I've used when I was worse that were recommended to me by a nurse health specialist which helped. Definitely use aids.
 

Emmarose47

Senior Member
Messages
2,115
Location
UK
Maybe we need to make T-shirts with Sayings On them, or ball caps.

Disclosures.

"Its Neurological"...that might be a good one.

"Orthostatic Intolerance Joy"

"I Fall Over Easily, do You?"

"Eppstein Barr Ate my Collagen"

Or: for more recent new recruits: "COVID GOT ME"
Mine would say
Exertion intolerance as existential
Maybe we need to make T-shirts with Sayings On them, or ball caps.

Disclosures.

"Its Neurological"...that might be a good one.

"Orthostatic Intolerance Joy"

"I Fall Over Easily, do You?"

"Eppstein Barr Ate my Collagen"

Or: for more recent new recruits: "COVID GOT ME"

🙂👍 Mine would say
I'm having PEM and an existential crisis
Apart from that I look.well don't I
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,995
Thank u all for this post ...
I am now the proud owner of a neat sports version mobilty scooter . It powered up my hill so I'm happy .
My world has suddenly enlarged ...
I hope it gives me a journey of expansion
Which one did you get?
I own a Travelscoot, also very useful to me, i an get groceries and go to many places i could not before.
 

Emmarose47

Senior Member
Messages
2,115
Location
UK
Which one did you get?
I own a Travelscoot, also very useful to me, i an get groceries and go to many places i could not before.
Oh that's great to hear
It's a rascal veo sports version ...
I wasn't holding out much hope but it's pretty powerful got up the hill no prob .
It's 4 yrs old but the owner only used it in the house it seems new and for a 3rd of its original price too .
My world seems possible to open up I really hope it's good experience .
Do you find it draining using it ? PEM from stimulus of being out or anything like that ?
On needs to be paced
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,995
Oh that's great to hear
It's a rascal veo sports version ...
I googled it, looks very nice.
https://www.discount-mobility.co.uk/p544139-rascal-veo-sport.html
I wasn't holding out much hope but it's pretty powerful got up the hill no prob .
It's 4 yrs old but the owner only used it in the house it seems new and for a 3rd of its original price too .
I also got mine used for about 1/3 of the new price.
It says yours uses lead acid batteries, if its 4 years old it may have very little capacity left. Hill climbing ability is not capacity, electric motors have gobs of torque.
For lead acid you want to keep them fully charged at all times, if possible plug in the charger after each time you use it.
If they kept it plugged in it may have decent capacity left or it may be on its last legs.
Replacement batteries form the company are probably expensive but if you know anyone who knows where to find generic batteries you should be able to get them much cheaper.

My world seems possible to open up I really hope it's good experience .
I found the exact came thing
Do you find it draining using it ? PEM from stimulus of being out or anything like that ?
On needs to be paced
I do find it draining, its a different kind of PEM, cognitive, and physical as if i went on a long, long car drive. Its a different experience, with physical activity you feel the tiredness right away with the scooter its easier to overdo it becasue your doing less but many times and stretched out over longer periods. Plus your not used to thinking about being on wheels vs walking so its a different kind of cognition.

That said you will learn how to pace it and if possible find some space where you can spend some time going forward, taking many corners, going backwards and put together an obstacle course. The more you practice the more second nature it becomes.
 
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Emmarose47

Senior Member
Messages
2,115
Location
UK
Thanks Alvin all v helpful ...
Ok yep re.keeping battery charged ..
When u say generic battery what does that mean ?



'climbing ability is not capacity, electric motors have gobs of torque’
Could u explain.please e I don't understand 🙏😊
The prev owner only used it indoors . They said it had a 22 battery in it so seems they upgraded ?

Interesting our different experience with pem ..with the physical I don't feel it straight away it's 5 days later !
I noticed today 2 hrs of socialising and I was tired and lay down after ..
Cognitive tiredness seems only an issue for me if in a crash
 

Emmarose47

Senior Member
Messages
2,115
Location
UK
Today I went out on my first trip..
First time I'd seen my local community since October ...
It felt nice to see the trees and have some independence.
I also felt a sadness for the women who has been shut up in a bedroom for all this time ( well other areas of house and garden but a lot of bedroom ... And a sadness for all of us ..
And of course I'll probably be back there but today I was out and had some freedom ..
I miss nature so much ...
 

Wishful

Senior Member
Messages
5,679
Location
Alberta
Interesting our different experience with pem ..with the physical I don't feel it straight away it's 5 days later !
I noticed today 2 hrs of socialising and I was tired and lay down after ..

Yes, the two triggers do work differently. Physical exertion would trigger my PEM a consistent 24 hrs later, but socializing would trigger it with a more variable delay of an hour or even less. The PEM felt the same though.

For replacement batteries for scooters, I expect there are forums somewhere with good advice on buying replacements, and general advice on using and maintaining the vehicle.
 

Rufous McKinney

Senior Member
Messages
13,249
I also felt a sadness for the women who has been shut up in a bedroom for all this time ( well other areas of house and garden but a lot of bedroom ... And a sadness for all of us ..

My neighbor next door is in her late 80s, alone in a big house with a small dog. I rarely see her but she does. sometimes appear on the porch.

She has family in town who check on her, but mostly she seems just alone over there.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,995
When u say generic battery what does that mean ?
Lead acid batteries come in many sizes. They all use the same technology but you can get them in 6V, 12V, and anything from about 1Ah (small) to 100Ah (extremely heavy). There are only a few battery manufacturers that supply everybody.
Scooter companies like to package them nicely, use a unique connector and double or triple the price. But since they are commodity batteries you can often find someone who sells the base battery and you can move the case and wiring from the old to new battery (sometimes its welded and you can't or someone has to make an adapter for you).

'climbing ability is not capacity, electric motors have gobs of torque’
Could u explain.please e I don't understand 🙏😊
Gasoline engines you have to rev to get much force out of them (and they need transmissions), electric batteries have almost full force as soon as you sent power to it. For the same horsepower an electric motor will make a fossil fuel powered vehicle look like an amateur.

The prev owner only used it indoors . They said it had a 22 battery in it so seems they upgraded ?
No idea, though i will guess 22 means 22Ah. Upgrade would mean larger battery for more kilometres per charge.
Interesting our different experience with pem ..with the physical I don't feel it straight away it's 5 days later !
I noticed today 2 hrs of socialising and I was tired and lay down after ..
Cognitive tiredness seems only an issue for me if in a crash
Physical i used to get delayed PEM, now its instant or next day. And screws physical and cognitive for days.
Cognitive is instant and can screw my cognitive for days.
 

Aspen

Senior Member
Messages
145
Thank u all for this post ...
I am now the proud owner of a neat sports version mobilty scooter . It powered up my hill so I'm happy .
My world has suddenly enlarged ...
I hope it gives me a journey of expansion
Woohoo!!!! So excited for you!! :woot::balloons:
 

Aspen

Senior Member
Messages
145
Thanks Aspen
I went to my local park it was wonderful
I love that SO MUCH!!!! My turn is coming, as soon as the weather warms up a bit - I got my car back from the shop yesterday with a new hitch mount for my wheelchair carrier, and I’m ready to go on the road!! I’ll be thinking of you when I’m out there, both of us roaring down the sidewalks with our hair flying in the breeze. :D:angel:
 

Emmarose47

Senior Member
Messages
2,115
Location
UK
I love that SO MUCH!!!! My turn is coming, as soon as the weather warms up a bit - I got my car back from the shop yesterday with a new hitch mount for my wheelchair carrier, and I’m ready to go on the road!! I’ll be thinking of you when I’m out there, both of us roaring down the sidewalks with our hair flying in the breeze. :D:angel:
Oh that's great news Aspen ! I can do a Mighty 4mph 🤣 I may upgrade if disabilty acknowledge that I can't walk !
Is your wheelchair electric ? Good news re the car 😊☀️