mobilty options.
 

Hi,

While I wait for my T-spine MRI in 4 weeks and am in 'limbo-land', I wonder what can I do to help my mobilty? (well with or without a dx, I still have sx limiting physical activity!)

I had to go up to the 3rd floor of a big shopping centre today, and it was so far! My legs got weak and I was really walking funny. 2nd time it's happened that badly at the shops and I either had a few 'looks' from people like I might be drunk, or they avoided looking at me. (this is very new to me).

I know I can hire a scooter at a big centre, but I just can't bring myself to do that yet.
I know some of you here have been in scooters for a while, but how did you feel the first time?

I also went to my doctor to ask to fill out the application for a disabled parking sticker. It seemed so flimsy - without a dx, it might well be rejected.
Over here we do have a second option of a sticker that allows you double the parking bay time if you need rest periods while shopping. I might get that one hopefully.

I did buy a phone headset back in May so I'm handsfree for long chats - my hands don't get achy/tingly when on the phone for a while now!

Just a funny end note - well not so funny: my sister who has "probable MS" (only 4 brain lesions!) was in the middle of an MRI and it broke while she was in it!!! AHHHH!! Out she hopped while they had to fix it. That might be the same one I'll be in in 4 weeks!

I accepted the crutches, wasn't crazy about the walker, but noticed my mall shopping had more and more rest breaks. Weekends DH took me in manual chair, but we did not look and linger much, He was all business (Men!!!!) get in, get out.
Now I'm permanent in chair, like dependence power gives me, insist on power travel chair when out. Chair gives me more freedom in house. Make toilet on time, go into rooms and do things I absolutely couldn't before. Canes, crutches and chairs do draw stares but you are still you, just using tools. Don't let others take your mobility and freedom because they're staring idiots.

I use a walker and an electric chair that breaks down into 5 parts to place in the trunk of my car, depends on where I am going.

I still do not like to use either (I hate MS, I want to walk like others), it is necessary so I am just getting over my hatred. It is a choice, stay home or go out.

Either way, it seems people get startled to see me when the elevator opens. Funny how I hear, "I'm sorry" a lot as they get out of my way.

I am sensitive to it, overly sensitive. But I am learning that it is only me and I have control over my feelings. I prefer to go to parks, the theater, dinner with friends, etc.

If it takes a walker or a chair, so be it.

Imbarrassed, until I was finished shopping and could hop in my car and go home and not be exhausted, from all that walking.:D ..Until then, I used a walker with a seat. when I got tired, I'd turn it around and sit down and rest.

Whatever it takes to save energy, Free..:hug:

I know I have two choices. Either suffer while shopping or not go at all, orrrrrrrrr give into stubborn embarrassed self and rent a scooter at a zoo/park. Our mall isn't big enough to use a scooter but I do have a manual if I had to use it. It did take awhile to get to this place though.My family uses my manual more than I do and I hope that it continues that way. But I always know it is there if needed. But the guys at Freedom Medical are all very familiar with me and my 3 day rentals when I travel.

Good luck in your growth and decisions.

The unspoken - there are things "nice" people don't talk about. Seems I'm not nice. In Dejibo's brown thread I breathed a sigh of relief , yes, yes, this is a problem. Poor Dad lay in bed for a week with Sciatica then some weeks more. My nice family certainly wasn't going to talk about BMs. The other, well with a jug a brother purchased, he could do it himself. I saw Dad's blue eyes were now brown, in a no-nonsense voice, ( I should have been a nurse - as an elementary school teacher guess I got some training in no-nonsense), OK, I said picking up the bed pan, let's use it. So he did.
Anyway, my point is, there is a crip hierarchy (we all know that, we should know that) - walking trumps canes, canes trump walkers, walkers trump wheelchairs (I do play poker sometimes - but that sounds like bridge). If I allowed it, as a chair user, I could be low hierarchy. I hold tight and tell some (some who aren't even interested!!) I'M SELF-TOILETING! That trumps self and always catheterized. Hey, I got to hold on to something. Wheelchair use is a very prickly use and transition thing emotionally. It is.

To quote Popeye, I yam who I yam. Put me in a hierarchy, I'll run your toes over. Whoops, I'll say, what?? :cool: Being in a chair means I work a little harder at being me, so no one forgets. Wheelchairs ain't for sissies! (to mis-quote Bette Davis who spoke of old age)

:You-Rock:


:Tip-Hat:



OMG, Kicker, I love you.


You so rock, woman.

Meh.... I'm out. All I gots is a stick and a pair of deuces. Anyone else need a drink while I'm up?


Freesia, Use any tools that help you live your life. I use a cane as needed.

My dd was a young teen and we were out at a huge mall shopping. she was the 1st person who noticed my *drunk walking*. I felt awful - for her. She was embarrassed and worried for me.

I think that was a big part of helping me get over myself and just use the dang stick, you know? It's not all about me. It's about not falling down and hurting myself and freaking them out, not embarrassing or worrying them.

MS sure ain't for sissies!!!!

Hi Freesia,

I'm sorry to hear that your trip to the stores was so hard for you!:hug:

I totally understand the feeling of you not wanting to get a mobility scooter to use in the stores. I was like that when I fell ill too and made myself worse by trying to walk - stupid, I know!!! Eventually, it got to the point where I had not choice but to use a wheelchair full time. My Doctor did a procedure on me (nerve block) to try and dull some of the pain in my foot and I had pretty bad complications from it that meant I had to use a wheelchair full time. The block took me off my feet complenty and I lost all co-ordination in my legs.

I HATED the fact that I had to use a wheelchair and I became pretty Depressed. I was only 12 years old at the time and got very self conscious. I hated going out in public as I would often get nasty comments from my so-called "friends" and thought everyone would be looking at me ... they probably weren't but thats how it felt.

It took a while for me to accept that I had no choice but to use the wheelchair. I don't think I ever come to terms with the fact but deep down, I knew I couldn't do anything about it and that it wasn't my fault. Whenever I tried to walk, I fell straight to the floor and had to have my mum carry me everywhere so the wheelchair was the only option.

After going under an intense Physiotherapy course (PT), I am now able to walk short distances. I am still unstable at times but it makes such a huge different just to be able to walk a little :) !!

Just a thought, have you ever considered using a cane? My PTs suggested using one of those before I lost the co-ordination in my leg fully but my doctor said that crutches would be better for me. They are quite stable so should help you and might make you feel a little better than having to use a scooter??

I totally understand how you are nervous about getting a scooter but you have to think about yourself! Theres no point in trying to make life harder for yourself just by trying to walk! It doesn't mean that you are giving in and I think it shows that you are putting yourself first as long as you remember to try and move as much as possible!!

I wish you the best of luck in getting a diagnosis - I know how stressful it can be. If you ever want to talk to someone who can relate to what you're going through, please feel free to PM me!:hug:

I second the emotion:

Kicker, you rock.

i hardly go into stores to shop. if i do i use the cart and take a folding cane.
i started out using a cane. then i got a rollator (a walker with a seat). that's been very helpful because if i get too tired i can sit a few minutes and then con't.

i also have a van with a lift in the back and have a scooter. if i really want to go shopping i do use the scooter. i've found that if you smile at people and communicate your needs they do the same.

i don't bother with people that aren't friendly. it's not me, it's them.
when i first got my handicapped sticker i put off using it. but then i had to and i havn't looked back.

you find that using aids to save energy is what it's all about. saving energy lets you do other things that are more important. you just get used to it. and so do your friends and family.

Sometimes wheelchairs make you more approachable to some people. They may feel you are less likely to reject them. Children always stare, I like kids (Taught and have my own) and most know it and know they can ask my anything. And what parent can resist anyone liking their kid? Went to a neighborhood block sale event, my zooming (Thanks Marc, Wheelchair Kamikaze) and feckless driving got noticed and commented on. Sometimes you gotta make your own party.

Feckless driving - Doesn't everyone think they're an excellent driver?

Kids have a 6th sense about people that way. There used to be a man in a wc with a service dog who was always at the local mall. My kids - all the kids I suspect - were curious. Mine were too shy to go ask anything, so I did for them. The man was very friendly and open, and after that, the kids would wave and say hello when we'd see him.

Once they know what the deal is, it's no big deal.

A couple yrs back I met a woman with a service dog so I asked her a few things about him - I thought he was her dog. But she was just training him. she was surprised I thought she looked like she needed a dog....

I said no, but you never can tell. ;)

Consider this--- You say your spine has problems, and you are awaiting an MRI scan. Holding the handlebars on a scooter puts load on your spine. I had a scooter until recent weeks when I realized that my paralysed back muscles were taking more irritation than I thought. I have now gone back to the powered wheelchair and eliminated that problem.

[QUOTE=jackie66;549102]Consider this--- You say your spine has problems, and you are awaiting an MRI scan. Holding the handlebars on a scooter puts load on your spine. QUOTE]

Hi Jackie,

I think I just called it the wrong name. I meant a powered chair you sit on, and kind of looks like a vespa!
At the shopping centres they hire out these scooter chair things - mainly for the elderly.
So what I meant was I'd be sitting down with no pressure on anything except my butt.:)

[QUOTE=Freesia38;549317]Yes. that is the type I was meaning. You would be amazed at the load put on your back whilst steering. I am more aware of this since my whole back is paralysed both motor and sensory. Your butt is taking a constant load whilst your arms are taking an intermittant load that is pushing on your upper torso.

I have n Invacare TDX - Spree and after 2 tries, got a seat and footrest my body likes and can do the most with, The first, a gel, concave seat, I called the toilet seat held me down and the elevated swingaway footrests furthered this. My self toileting days looked bad. Man, it was really wrong , and despite a set-up perhaps intended for someone who had lost much and had to be PUT in a seat and was bigger, it made my leg (upper thigh to knee) ache, my sciatica worse, etc. Hated it. My butt is still small enough so sinking in that seat was WAY down. Now I have a more upright seat, foam, air (seat adjust with air valve that inflates and deflates by self - $$$$$$ but I got free - man, I am a squeaky wheel- and some gel where tail bone is, flip up horizontal foot plate had much less pain, mobility,can self-toilet with less problem, etc. Oh, and discovered toilets come in heights, being short could not fully touch floor, insisted we junk new pretty on for 3 inch shorter one (used in Elementary school bathrooms - man, I am short (5' 3/4") but feisty) - New toilet's seat was wrong, paid for new wood Beamis. ( Being Handicapped is expensive but what a difference (though DH thinks me a Princess and a Pee!!!!!!!!!) . My point - fight for what is right (for you) We are all different.

If we have scooters to rent in the mall, I am not aware of them.

Since I walk but just 100 feet would be exhausting, I convinced my MS doctor to give me a prescription for an electric mobility device - either a scooter or a chair. The object was to get insurance to cover some of the cost.

DH and I were investigating one that would break apart into pieces so that it could be put in a car or trunk of a car.

There were several to choose from. We went to a mobility store to look at both and see how easy it was to break apart and if it would fit in our vehicle. Plus we were interested as to whether I could put it together which would give me more independence.

Both were doable. We picked the chair, only because the footprint was smaller. I never was really able to put it together, it was just too much work for me, wore me out. However, my DH and DD can put it together in about one minute or so.

It allows me to get out a lot. Goes for 8 miles on the battery but if I take my plug in cord, I just use electricity from a restaurant and have a eating break.

I'm in Melbourne, Aust, so maybe each shopping centre is different, but at most centres here I think they hire scooters, or it might just be my local one.

Some of our malls do, and some of the stores do. It's hit and miss in Ohio. Ususally, if it's a bigger store - especially grocery stores - there are a couple of scooters. But still, you can't count on one being available. And you can't count on them being charged.

Just my 2 cents...

the justification on mobility aid is not tied to a "diagnosis" but instead is dependent on needs. In other words, if you can't walk unassisted for X feet/minutes you need (and qualifiy if your medica records have notes about it) a set of crutches/walker/wheelchair/powerchair etc.

Heck, even Medicare uses this justification. For example my neuro documents I have ataxia (balance) and endurance limitations. My right hand is fused in a few joints, blah blah blah. I was approved for a K0005 level chair with no problem and am only highly probable MS. The main point is that they are interested in what you can do, what you cannot do and (more importantly) what you can do again if you have equipment X, Y or Z. Its all about Atvities of Daily Living;)

If you need it just tell your doctor. Most are usually happy to document the need so that you can get what you need. Good Luck and chin up!:hug: