Mobility: Hi All Just wondering about the... - PSP Association

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Mobility

beau1988 profile image
22 Replies

Hi All

Just wondering about the kids of mobility. Hubby has CBD. Shuffles at times but can stride when agitated. Unfortunately, that has caused lots of falls & collisions with anything that gets in his way. Sometimes I feel loss of his mobility would be safer. Did your LO lose it slowly over time or overnight due to other circumstances. Sorry for the long post. Just at my wit's end.

TIA

Kerry

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beau1988
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22 Replies
beau1988 profile image
beau1988

That should say loss of mobility

A rollator walker might be useful for him now. Has he seen a physical therapist? They could help with ideas of what he could use.

beau1988 profile image
beau1988 in reply to

Thanks but his right hand is fairly well useless. A lot of his falling is him just sitting anywhere. His cognition is seriously impaired.

kenh1 profile image
kenh1

My wife lost her mobility during a bladder infection. She walked into hospital. Whilst in there one of her legs became twisted and she never walked again.

When I commented to the hospital chaplain that it was strange that the bladder should affect the limbs he politely told me that it was because the brain was working overtime to fight the infection.

beau1988 profile image
beau1988 in reply tokenh1

Thanks

Dadshelper profile image
Dadshelper

Dad went from assisted walking to using a walker over a few months. He used a walker for 6-7 months then walker to wheelchair over 3 days..

Ron

beau1988 profile image
beau1988 in reply toDadshelper

Thanks

doglington profile image
doglington

The dilemma I struggled with many times was that the " safer " I kept him the lower his quality of life.

He was always a man who liked risk !

In the end when Chris was in respite in the hospice they lowered his bed to the floor because of the risk of him falling- although he couldn't even turn over most of the time.

X

beau1988 profile image
beau1988 in reply todoglington

Thanks

DE4EE profile image
DE4EE

My wife can only take a few steps when fully supported by myself but she can stand and transfer to a chair, so we have a couple of transport chairs they are smaller than normal wheelchairs and ideal for indoor use. As we live in a semi we also have a stair lift.

beau1988 profile image
beau1988 in reply toDE4EE

Thanks

SewBears profile image
SewBears

Hi Beau,

Have you had his eyes checked? It sounds like he might not be able to see much and therefore might not sense that there is something in his way? My husband shuffles too but his physical therapist has taught him “heal, toe, heal, toe”. This wasn’t possible until we tried Levodopa, which helped his gait tremendously. However, his doctor said that most people who have CBD do not respond to Levodopa and he changed hubby’s diagnosis to Lewy-body. I’m still not convinced that this is his disease. Anyway, you might want to consider an eye exam and ask his doctor if you could experiment with Levodopa. I mean... at this point... why not see if Levodopa works?

Sending hugs from I SewBears

Xoxo

beau1988 profile image
beau1988 in reply toSewBears

Thanks. I think he runs into things because he never looks where he's going & when he paces he just crashes straight into things

SewBears profile image
SewBears in reply tobeau1988

Hum... does he look down at the ground when he walks or does he just not see objects that are right in front oh him?

beau1988 profile image
beau1988 in reply toSewBears

He looks down & at times to the right

SewBears profile image
SewBears in reply tobeau1988

Unless there is a physical limitation whereby his limbs cannot allow his body/head to be held up, consider a medical neck brace. I can’t post a picture. Let me see if I can send a link, something similar to this:

Ossur Miami J Cervical Neck Collar - C-Spine Vertebrae Immobilizer Semi-Rigid Anti... amazon.com/dp/B00BHEN9FQ/re...

beau1988 profile image
beau1988 in reply toSewBears

Thanks so much.

AJK2001 profile image
AJK2001 in reply tobeau1988

Not sure if this is helpful but Mum can't look down, so we worked out where her field of vision was and put bright blue masking tape on the door frames at that level so she could work out where they were.

beau1988 profile image
beau1988 in reply toAJK2001

Thanks great idea

Kaka1234 profile image
Kaka1234

My husband has recently started to use a wheel chair when we go out as he gets very tired and shaky when he walks a distance.

He potters around home but a shuffle and slowly.

We are about 4 years into CBD

beau1988 profile image
beau1988 in reply toKaka1234

Thanks

Marilyn_cbd12 profile image
Marilyn_cbd12

Hello. My husband, with CBD, has lost mobility slowly over a period of several years. It began with balance problems, then progressed to leg cramps and leg stiffness (Sinemet did help with this problem) and now he is not very mobile at all because of severe neck dystonia, poor balance, stiffness and cognitive impairment which makes it hard for him to remember the layout of our house.

Marilyn

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