I have CMT and have extreme difficulty walking. I’ve been very stuck in the house for fear of falling. I miss my independence. I have been thinking of getting a foldable powered wheelchair so that I can try to gain my independence back. It’s embarrassing getting stared at when I walk. I have so much pain when I walk.

@shawnmcanthony5724

Жыл бұрын

Every human living has problems your problem is you can not walk properly. Other persons may be depressed and may not even know they are terminally ill. Thank god you are alive. So never be ashame.😎

I got a Quickie 2 from a guy who found it at an estate sale for $500 off Ebay - he even delivered it to me. Taking it into the local mobility store to have the seating and center of balance adjusted in a couple weeks to make it more perfectly suited to me. I would check all these second hand places if you are looking for an upgrade and can't get insurance to cover.

I use either a cane or rollator inside, and a wheelchair when I go out. I am getting an electric wheelchair soon with money I have raised. Currently my Mom is sharing her wheelchair with me. I am looking forward to the freedom and independence it will bring me. I hope to get a wheelchair and rollator in one soon for when I am with someone so that I can walk some without risk of not being able to walk the full way and have to wait for someone to trade out my rollator for a wheelchair. And I wouldn’t have to pick between one or the other.

You talk so fast!!! I enjoy these videos a lot. Maybe you can do one of the “what I do in a day” videos that are so popular.

@SamBosworthMusic

5 жыл бұрын

Haha I knowwww, I try really hard not to talk fast but I always forget! I am working at subtitling all my videos which will help haha. I definitely want to do a day in the life video, thanks for the suggestion!

Hi Sam.First time I've seen your video.Loved it.Really refreshing.Just to mention crutches.I got mine from a company called Cool Crutches.You can virtually design your own.Being an Everton supporter I got mine with the EFC crest With a type of rising smoke thing in blue & white.Love it!A bit sad really,but I like it.Oh BTW I have have CMT1A.& old enough to be your dad.Fortunately I only started to need crutches about 6 years ago,but like you after 20 minutes walking with them the pain is horrendous.I've subscribed so catch you soon & thanks.

@SamBosworthMusic

5 жыл бұрын

Hey Geoff, that sounds cool! I'm a sunderland supporter, not sure I'd be as confident letting everyone know that living in Newcastle haha! Thanks so much for the comment and for subscribing!! :)

im a part time wheelchair user ( i use forearm crutches when i dont use my wheelchair) i have ehlers danlos syndrome and low muscle tone.

Hi Sam. Came across your vlogs and appreciate your informative information. I am in Australia and my wheelchair is very similar to yours. I use a Karma Ergo Lite 2 due to lower L4 L5 injury and mid back issues. Thanks for sharing with us and looking forward to watching more.

I just had to upgrade from a rolater to a wheelchair I have spinal cerebellum attaxia I also have neuropathy

Hi , I have HNPP , which is same family as CMT , and I finally took the plunge and got myself a wheelchair second hand , on the physios advice, been wearing leg braces on and off over the past few years , but I found I trip and fall over , last fall badly damaged foot , But I get what you say when people see you in a chair they think you can’t walk at all , so when they see you walking they tend to judge , got a neighbour in my block that really verbally judges , hey ho , Also got a electric push bike that all I have to do is push a lever for it to go , amazing freedom on that But I have found I’m using my chair all the time to go into town which didn’t think I would , it’s helped saves extra foot drops and fatigue Seeing people on here like yourself taking about part time use of a wheelie has helped me get over things to start using a chair

Have you ever had a accident with your wheelchair involving a failed attempt to get up a ramp or curb? I'm really scared of the I've fallen and I can't get up thing

I'm recovering from a stroke. I have good strength but no balance. At 66, I'm afraid of falling.

Loving the jolly background track. Can we see your feet Sam so we can see how they affect you?

@SamBosworthMusic

5 жыл бұрын

Haha I love that kind of music! I am planning to do a video around my feet etc, just been planning how best to do it :)

@angiegolding6664

5 жыл бұрын

Sam Bosworth Cool I’ll keep an eye out for it.

What about afos? Have you tried them?

@SamBosworthMusic

5 жыл бұрын

I've never tried afos! I was told they were for folks with flat feet so had never looked into them. I've never been offered them at the docs or anything

@cathypower5508

5 жыл бұрын

Sam Bosworth I wear them. I do not have foot drop or flat feet. I am just very weak from the knees down. They are life changing. I only use my wheelchair for really extensive outings like a festival or shopping mall. They are custom braces with a Coyote Strut. I can lean into them and they hold me upright - no more grasping onto walls.

@cathypower5508

5 жыл бұрын

share.icloud.com/photos/0BitWPygSF-KBTxAKFy-1iF7A

@cathypower5508

5 жыл бұрын

By the way, I also have CMT - Type 2A2

@SamBosworthMusic

5 жыл бұрын

I'll have to look in to them! Thanks for the advice!