Wheelchair / Mobility Scooter

[Scout]

Hi there, 

Just wondering if anyone uses a mobility aid due to their dysautonomia?

I've been looking at getting one for quite some time, and, now that my symptoms have worsened, have decided I'll really need one.

I'm going to comic con in about 6 weeks, and there's no way I can go without some kind of mobility aid. I just can't stand that long. I just wish that people in my life were more understanding — they keep saying "c'mon, you don't need a wheelchair, just try harder!", and it's frankly so infuriating. 

 

[Pistol]

Hi Scout - I use a regular wheel chair for any function or activity where I need to be mobile for an extended period of time, i.e. taking my teenage daughter shopping. It works great b/c I can propel myself when able but can have others push me when needed. Don't worry about the people that tell you that you can walk or get along without a wheel chair - they cannot see how you feel inside. If you can go to comic con - by all means, take a wheel chair!!! Good for you to try going!!!! 

[Guest KiminOrlando]

I use a manual wheelchair too when out like that. I wish I had a motorized scooter but insurance won't pay and I can't afford one. 

[Scout]

Thanks so much for the replies @Pistol and @KiminOrlando! And absolutely — it's so frustrating having people assume that they know how I'm feeling, just by looking at me. 

Do you find it a fair bit easier to self-propel in a wheelchair, compared to walking, if that makes sense? Walking sets off my symptoms really bad, but I'm sure sitting down will help a lot, and I should be able to self-propel sometimes.

Also, can you recommend any wheelchair brands / models? There's so many to choose from! Trying to find the lightest one possible, whilst also not too expensive. Some one recently recommended a fabulous wheelchair to me... but it was $5000. 

[Pistol]

@Scout - yes, I can self propel in a regular wheel chair but it gives my legs a work out and after a while they hurt. You can use your arms to propel your self as well. As far as brands - there are many to choose from of all you are after is a regular wheel chair. Mine was purchased by prescription ( from my PCP ) from a medical supply store, my insurance paid for it. It was about $ 600. 

[Guest KiminOrlando]

I have Rheumatoid-arthritis so I can't use my arms to do it more than a few feet. I have to be pushed. I'm in the U.S. and my insurance company paid for mine. There are places around here that sell used wheelchairs that are perfectly good if you have to buy your own. Maybe there are some around you. It would be a good idea for the first one just to see how you use it and how often. Then decide if you want to invest more money and what features work best for you if you decide to buy a new one. 

[Pistol]

@Scout - since you are planning on goint to comic con - check if they provide wheel chairs. I have experienced that sometimes they offer them at big events. 

[Scout]

@KiminOrlando Good idea, Kim! I'll check out the option of a second hand chair, for sure.

@Pistol Very good point. I emailed the venue yesterday, and unfortunately they don't have any mobility aids, which is a shame. So many shopping centres and whatnot do offer mobility scooters and wheelchairs, so I'm a little surprised this place doesn't! It's a very big venue. 

[bombsh3ll]

I use a wheelchair too, & wish I had bought one a lot sooner so I could have gone out more with my family rather than missing out.

I try to walk a little when I can, & walk pushing my chair. It may look strange but I don't care. Sometimes people will joke that I'm missing a passenger, & I explain that I have a condition that means I can't stand for very long without fainting. I don't mind that at all as long as they aren't rude.

Some things to consider when choosing a wheelchair are - how portable is it, can it fold easily & be transported in a car boot? Can you self propel or have someone to push you, or do you need an electric powered one? What about head support/leg elevation/tilt function? Tyres can be solid or air-filled - the latter is more comfortable but can get a puncture/deflate.

I hired one first from a wheelchair hire company before getting my own - this is a good option if you want to try out a particular type before you buy it, or if you just need one for one-off occasions such as a special trip. Often rental places will sell second hand models as well which may be better than a private sale as you know it has been maintained & can go back if there's a problem. 

B xxx

[statesof]

Hi scout I as well have a wheelchair; I use a powered wheelchair because my symptoms are related to physical exertion in general so a regular wheelchair would be as bad as walking for me. Mines the Lite Rider Envy by Golden Technologies, it doesn't really look cool but it was the slimmest one I could find and had a long range cause it uses 2 batteries. With new good batteries its good for like 2-3 hours of driving straight, so if your going to a place and then sitting for a while it can last all day.

For my case of POTS I wish I had gotten it sooner just cause I can actually do stuff now that is completely impossible otherwise. It can break into 4 pieces to be put into a car but some of the parts are heavier so you might need a non-POTS person to do it, for me I have like an automatic hitch lift thing.

[lieze]

This is what I got. It may not be practice for all purposes but I got it because at the time I was hoping to get out to outdoor activities with my family. I got a really good deal on the price. I would probably like to have a wheelchair also which would be much more portable and for certain situations more appropriate. I love the scooter though. I have not been able to try it out yet other than around home. I’ve become very heat intolerant and have had a bit of a worsening of symptoms just here lately.