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Guest SADIE

How many of you use a walker or wheel chair?

21 posts in this topic

I know this is a weird question. How many of you use a walker or wheel chair? I use a wheel chair and also I use a walker that has a cushion on it to wash my hands so I won't lose my balance. I am pushed around on it around the house because of the nice cushion on it and it has wheels. I mostly use my wheel chair when my parents and I have to go somewhere. I find that the cushion on the walker is up higher then it is on my wheel chair.

Sadie

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Hi sadie,

 

I don't use either, but did just get a very pretty cane. I haven't used it yet, but there have been a few times I could have used it. I'm still too embarrassed to use my disabled parking placard. <_<


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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I use a cane sometimes and have a temporary disabled tag for my vehicle. I am amazed at the amount of people who honk the horn at me in anger and give me unmentionable finger gestures for going a little slow :huh: . My bad foot operates the gas pedal and brake, so I'll just have to put up with the rudeness.

 

Linda


Tru

 

It is what it is...........

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I have a very nice walker with a seat in it. It lifts up to reveal a nice amount of storage. We use it when we go out shopping together as it allows me to keep going longer, plus I always have a place to sit if I get tired. The main reason for me is osteoarthritis in hips and knees and an ankle that wants to give way at times. We use public transportation (buses and trains) as we do not have a car. I can't use it when I go out on my own unless my husband is there to take it down the stairs. I use a cane all the time. I have one that breaks down which is handy for carrying in a bag if needed. I was embarrassed about it at first, but it it is better than the alternative - falling down.

 

Pam, there is no reason to be embarrassed about the placard!


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Sadie ,

 

My son, Gareth (19 years old), uses his wheelchair all the time whenever we have long distances to travel.....big box stores, malls, airports, etc. He needed it 5 years ago before and after hip surgery and started using it again about 18 months ago after the sclero hit because he "gets so tired" walking. He also has the handicapped placard (from 5 years ag) and we just recently got it updated. I don't feel the least bit guilty using it for him.

 

Take care, Everyone.

Margaret

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I don't use a walker or wheel chair, but I will be renting a wheel chair in Chicago when I go about town and site seeing cause walking around for more than an hour is exhausting. I love my placard! We live with many of the disadvantages of this condition we might as well take advantage of the perks, i.e. the placard as well.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Last year at this time I got a walker then this past summer I got a power wheelchair. I dont need the walker anymore and only use the power wheelchair if I would be on my feet for hours. We went to the zoo in the fall and had a wonderful time. I didn't worry at all about being tired and needing to find a place to sit and rest up. I would urge anyone that has the ability to get one to do so it will increase your independence. Here in Canada the government will pay 75% of the cost. My husbands health ins from work paid the rest. Organizations also will help with the cost if needed. Kathy

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I have a rollator I use. I fall and it has helped immensely. The last time fell, last 4th of July, I took a nasty crack on my head. My sister got me the rollator to use and it's worked out great. If you are afraid of how it will look, forget it. I don't care how it looks and you will notice that most other folks don't care either. In fact, you will find other people will try to be most helpful. They will open and hold doors and such for you. This is a good thing!

 

I find it quite helpful. It keeps me from falling. I use it all over the house as well as when I go places outside my home. And, an added bonus: I am on oxygen and trying to make sure my tubing doesn't get tangled on things and trying to carry things around the house can be a hassle. I can put things on the rollator seat and just wheel them around. Neatoi!

 

jude

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Thanks for you replies! It helps me to know that theres others that use walkers, wheel chairs and cains. At first, I was embrassed to use them but these last few years it no longer bothers me. I rather use them then fall down and break a bone.

Sadie

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Hi Pamela,

 

How did you get your disabled parking placard?

 

Loren

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Hi Loren,

 

There is a form you can print from the Department of Licensing website. I gave it to my doctor, he filled it out and sent it in. Within a week I had it. Each state may be a bit different.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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I got mine through the local police department. Very short application which doctor signs.


Tru

 

It is what it is...........

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Some doctors keep the forms on hand. You might ask your doctor before looking other places. That's probably one place you go already!

 

Mary in Texas

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Ive had a disabled carpart permit or placard as you call it for over a year now, my sisters organised it for me otherwise I may not have got it so soon. I love it, as I definately get tired so fast while im on town. Im finding though, the dirty looks I get from people who can't see my permit at first but only see a young looking woman getting out of the car and sometimes I walk past them and they have muttered loud enough for me to hear. One time I was gutted and walked into a quiet isle of the supermarket and nearly cried, i was shocked. I guess If Im not elderly or half crippled they find it hard to believe I need it. Anyway.....Ive had my rant lol. Im not ready for a cane or wheelchair/walker yet, as Im still quite sturdy on my feet thankfully so far. But am always afraid that I will drop something in town like my keys or my shopping etc as I can't bend down to get it, i would have to ask somewone walking past to help me, now, that I would be embarrassed about, or I would have to hold something to get down on my hands and knees which is really hard and painful to do and getting up again is sooo hard. Quiet the challenge isnt it??

Susannah x

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Hi Sadie,

That's not a weird question at all. I started using a wheelchair about a year ago. My muscles and joints are pretty badly affected plus I get very short of breath. Walking around a supermarket holding on to a cart for a short while is about all I can do, so if we go to a museum, or a mall or have any amount of walking to do, I use the wheelchair. It took my sons awhile to figure out how not to run into people or play throw momma from the wheelchair!

The handicap placard is such a help especially in cold weather or even hot sunny days when being in the sun is too dangerous even for a short time. Even if you don't use it all the time, it's important to have. As far as the dirty looks go, too bad. Susannah, if anybody says anything, tell them you're blind, lol... I also have a 'cure scleroderma' magnet on my car so I can always point to it if I have to.

I have a good story for you all. Last year I had a fainting episode and ended up in the hospital. All the doctors could come up with was that I had a bad Raynaud's attack which put me into a serious spasm and caused me to black out.. it happened on the way to a doctor's appointment on a day which was extremely cold, well below freezing. So very cold weather can be very dangerous if you have severe Raynaud's (like we didn't know that.) I just never realized it could make you black out.

Anyhow a few days after I left the hospital, I flew out to California to spend some time in warmer weather at my best friend's house. When my son dropped me off at the airport it was 17 degrees outside. And the line for security was OUTSIDE. My son was very concerned, so I took out my disabled card that comes with the placard and the skycaps took me to the front of the line.

Well, mayhem broke loose and people started screaming at me. I mean SCREAMING. If they had rotten tomatoes they would have thrown them. I was shocked! I tried telling them that I had just come out of the hospital but they kept screaming at me. I wasn't about to stand out there arguing. Soooo, I did the walk of shame and went into the airport, into the bathroom and had a good cry. So I feel your pain Susannah. I had no reason to be embarrassed or humiliated but I'd never been in a situation like that before. We didn't cause our disease! We didn't ask for these problems! Ignorant people are ignorant and that will not change, only our reaction to them can...

After giving it some thought, I have an answer if it ever happens again. I would say 'you do realize that some disabilities are not visible. Be grateful that you do not have one of them. I have a disease called Scleroderma, and I will be happy to give you information about it if you are interested.'

Not only do I not look 'disabled' I actually look great, like I just came back from collagen injections and a cruise with my perma-tan. I learned to not jump to conclusions years ago. I had a brother with severe heart disease who had a heart transplant. He looked fine. He also got a lot of dirty looks. It got to the point where he just lifted his shirt and showed the scar which ran from his neck to his belt buckle. That shut them up. Sadly we lost him four years ago, but he is still an inspiration to me.

Maybe we should lift OUR shirts? nah, that wouldn't help but it sure would be funny.

We have enough to deal with, without other people's neurosis as well, so keep on chugging along in our wheelchairs, walkers etc with a smile.

Warm and happy weekend, Love, Mary


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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I live in Virginia, USA and you can get either a "temporary" or "permanent " placard . If you are permantently disabled you can get an actual license plate with the handicap sign on it. Here you have to get your dr. to fill out a super short form and sign it and then you take it to the Department of Vehicles and get it. I have a permanent license plate. I even have a "vanity" plate (it's personalized) it is a Jimmy Buffet Parrothead design and it says "MOM2U" and has the handicap sign on it. I have had mine for about 8 years now. I, too get the nasty looks when I park in the handicap spots. I will be 50 this May :P , so I've had mine since I was about 42. I DON'T feel guilty at all!!!!!!!!!!!!! I KNOW how I feel and what others think doesn't concern me in the least!!!!! I have a cane that a friend made for me and he made it out of a beautiful wood and it's got my initials on it and beautiful carved designs. I don't use it all the time, but when my knees and hips are flared, I do, because if I don't I will fall. I have also had some nasty falls. Don't feel guilty about having to use these things, cause like I said, we KNOW how we feel and we know what will happen if we don't use these things. Peace :)


Peace :)

Barbara aka relicmom1

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It is hard when others don't understand what Scleroderma is. That used to happen with me when I first was sick back in the 1990's when I first started wearing gloves. Now days, I'm alot more disabled so it doesn't happen anymore. My parents and I now days tell more about Scleroderma when someone ask. I've had to give more info on SD to my home health nurses because they don't hardly see Scleroderma patients. My Mom has even collected some of the calcuim pieces in a little box that has come out of my skin to show the nurses and others who want to know more about Scleroderma. I know that sounds strange but it has given them a better idea of what Scleroderma is doing to my organs.

Sadie

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Thanks Mary

You are right indeed and thanks for the encouragement. I dont always feel that confident to confront these things, but I know me, one day it will just hit and the right words and reaction will just come out ;) .

Sadie...its so awesome that you are asking these questions, we would never know these things about each other, otherwise. And the purpose of this forum is for support and to not feel so alone, it is definately working! Thank you :)

Take care all

Susannah x

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MaryFanPhilly:

 

Ah, if all we had to do was worry about how far in line we are and who is getting ahead. They have no idea how lucky they are to be able to wait in line, to stand for long periods, to endure the cold...........

 

I'll trade my spot in line (my illness for their health), if they feel somewhat cheated.

 

Linda


Tru

 

It is what it is...........

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I love the looks I get from people when I pull up somewhere and park my cute little jetta in a disabled parking spot with my music booming and head bopping to the music.

 

I'm lucky that I have an oxygen tank that goes with me everywhere now. so I don't get many looks anymore. But I used to get a lot of them.

 

I don't need a walker or wheelchair, or cane yet. Some days I wish I had them when I was out with my family/friends shopping or such. but don't very often go out anymore cause of this.

 

Hope your all well!

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Hi Linda,

That's another good answer... I'd gladly trade with you for the chance to stand outside in the cold! The things people take for granted. Sarah, don't avoid going out if walking is a problem, all malls and museums have wheelchairs for rent, usually all you have to do is leave a driver's license. There is NOTHING to be embarrassed about. In fact it's great cause you get to carry all the packages for your family and friends. Most durable medical equipment stores also rent wheelchairs by the weekend or by the week or month. Don't let the disease control YOU and YOUR LIFE. You have a life to live first and foremost. It's your right and privilege to live it despite whatever bumps are in the road. So get out to the mall and get some cute (but sensible) shoes girlfriend!!!!! Love, Mary ps I hope you're head boppin' to Bon Jovi 'It's my life, now or never, I ain't gonna live forever. I just wanna live while I'm alive!'


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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