I searched this topic and it is obviously a scarce and avoided topic (understandably, but I am just curious. I am in a flare and I can use and feel my legs but it hurts soooo bad to walk. I find myself sitting in my rollator and pulling myself around the house with my arms n feet. This is great and all but the turning capabilities of a rollator leave me thinking I could do less work if i had a chair.
I have prob the best ins I could ask for so if any one would cover it, mine will. I was thinking about getting forearm crutches for "nonflare" life and just haven't done it. Those might help me not be in this much pain at night if I would take some stress off my legs during the day.
I am waiting to hear back from UCSF neuro. My tysabri was administered 3 weeks and 6 days ago and tomorrow is my treatment. Maybe this is my norm as the tysabri wears off...oh I hope not since I haven't heard back from UCSF at this point in the evening, I am not driving 45 miin the fog and have the tysabri administrator tell me they have to talk to the Dr before they can treat me.
Went to my (until today) regular neuro who sent me to UCSF for the tysabri. He has pretty much washed his hands of me. Sad too I thought I liked him. Anyway...off topic sorry! He thinks I am in a flare but says I have to talk to UCSF as they are my primary neuro now.
So back to my question... when u have had to use a chair, what was ur reason? Was is because u lost use of one or both legs? Can u describe ur idea of "lost"?,Have some of you sat down because of pain? I am sure balance will come up here.
I would just like to hear if I am being a woose or if I am putting myself into a next step that could lead to a place I don't want to be. Or if I have a valid reason to go to the Dr and say "hey I need to sit down for a while"
I resisted getting my wheelchair for quite a long time for exactly the reason you mentioned...leading me to a place I didn't want to be.
I can't walk for long at all. This is due to weakness in my legs. Usually I am ok around the house. If I were to go to Wal-Mart and park in handicapped and walk to the door, I would have to sit down right about the time I hit the door.
With me, if I push it to far and try to walk anyways, my legs decide they aren't a part of my body anymore. They just stop. I don't know how to explain it any differently.
So, I use my wheelchair any time I leave the house. Sometimes if I am going inside somewhere and will be sitting down and the door is real close, then I will walk in...but my chair is always in the car.
When I first got it (2 yrs ago) I only seemed to need it if I was in a flare or if I over-exerted myself. That has slowly changed over the past two years. Now when I flare, I am in the chair even at home.
Everyone keeps telling me that wheelchairs, scooters, walkers ect. are to help us keep our independence. I haven't quite accepted that yet...I still look at it as a loss. I really am trying to change that mindset.
Oh and I do use my chair because I need to sit from poor balance and pain...that and my scooter and walker. And I do use my hands and feet while in my wheelchair. My foot rests are always off my chair.
My reason for going to a chair is much the same as Addi. I was resisting with all my heart because I was stubborn, but I suddenly realized that I was wasting all this energy just to walk. When I would go somewhere that required a lot of walking like the mall I would tell myself to suck it up and be brave.
One day, however I realized that I could not even enjoy the company of others because all my strength and energy was totally focused on ambulating. The day I gave the chair a try was when I went with a friend to the zoo. As we were going along she said to me, "This is the happiest I have seen you in a long time on one of our excursions." That did it for me.
It has given me more freedom, and I do not dread outings knowing I that when I return home I will not be suffering from such pain and exhaustion. I even decided to enjoy the chair itself. When I picked out my own to order went for a fun look. My chair is candy apple red with black trim. I have a friend who is an artist, and is going to paint on the back. Also, I help coach a robotics team, and they want to attach lights to the wheels when we go to tournaments.
I have decided to embrace it, and allow myself to re-enter life in areas I had been forced to leave behind. The first few times felt strange, but I figured out it was me, not others. When I asked my friends about it they laughed and said, "What wheelchair!" That tells it all.
Now, you my have a few "friends" as I did who will give you a lecture about giving in to the disease, etc, and try to disuage you from using a chair. If so, just tell them what I did, and ask them to spend an entire work day on their knees, then tell me not to us a chair. That usually took care of them.
It all boils down to viewing it as a gain, not a loss. So, take the plunge. I will be wheeling right behind you!
By the way, Google "manual wheelchair" too see all that is out there. You will be shocked and amazed. It is not just your grandmother's wheelchair. When you do research it have paper nearby for note taking. You will need it.
Then you will have to post a picture. I saw one guy's chair that he had souped up and put a $30,000 seat on his like those the NASCAR drivers use. Then he painted it all bright lime green. It was a scream.
Those kind just crack me up, but that is what I mean by embracing it.
I think this is a very valuable topic. I too struggle with this, and it is so difficult for other people to understand. I can walk - maybe not well, but I can do it. But I have right foot drop, and have lost a lot of my glut muscle in that leg. Also, my gait is weird - kind of like a robot sometimes. I also have really bad back issues as well as balance problems during flares - plus bad arthritis in my knees.
So - I've used a cane for years, and when in a store - ALWAYS have to use a cart to lean on. On bad days - most lately - I use the motorized carts at places like Walmart. One day when I was shopping with my mother at Kohl's, and I knew I was going to last such a short time before I would be sitting on the floor - yes I do that! I decided to use the wheelchair. I couldn't believe how much better I felt. Half way through, my mom was feeling dizzy and I offered her the wheelchair and SHE WOULDN'T use it. She wouldn't say why, but my grandmother had a stroke (my mom's mom) and was in a wheelchair the last several years of her life, and I think she feels that it would mean she was defeated. It made me really sad.
Sometimes I think it may be easier for someone who isn't quite as old - she's 82 - I don't know. I do know that I'm looking at the walkers with 4 wheels and the seat. I use my dad's (deceased) walker and I can't really use it to walk very far. Also I want to sit after a very short time. I have my grandmother's wheelchair - NOT COOL OR RED, but I am very willing to use it for an outing of any length. Thing is - I haven't been well enough to go on a long outing! lol
People have the mindset that wheelchairs are only for people who have paralysis or are amputees etc. When you're able to ambulate - even though poorly - they don't understand. I too am getting less interested in the opinions of others. BUT - I admit that it is due to the increased pain and disability rather than my emotional maturity or growth. I want to think it's both - so I will - ha!
Long winded as usual! I say go for it - it saves you for another day instead of braving it and then spending a week in bed! Thanks for the topic - it's been helpful for me to sort out my feelings about it too.
I didn't have the luxury of having a choice on my wheelchair. Bottom line, I could not afford to pay for one that may fit my personality better. I sure wish I did because if I could then I might have an easier time with acceptance, you know?
So I got the wheelchair they gave me and immediately went to the Harley store and got me some stickers. :). I put only two stickers on my chair and I was happy with that. People do initiate conversations with me by commenting on my stickers.
I call my chair my Harley. Lol. Hey, it works for me....
I feel embarrassed bringing this up with my doctor. There have been a couple of times when I thought this would be solved for me but never has. I don't know why but I feel ashamed, like I should be able to muscle through. What did you say to your doctors? How much will Medicare pay?
Addi, I love that you put Harley stickers on yours!
I think you are valid in your feelings, Red! As far as asking the doc for a chair, I never had to. Like I said, I waited too long to get one. My doctor and my mother both knew this. My doctor actually brought it up to me.
I was on Medicaid when I got my chair. It didn't cost me anything. I find myself now in need of a bigger one as my...eh hem...as s....lol...has grown. I asked and was told I could only get a new one every three years.
But now I am on Medicare. So I asked if I would be able to get a new chair through that. Well, we ran it through and I have my new bigger chair. This was free, too.
Hi guys, I too as with everyone else and not willing to admitt that sometimes we need help. I do use a cane, and let me tell you, that is still a hard thing to use. I keep hoping there will be a day when I don`t have to use it, but I think that is just a wish in the clouds.
I am lucky I suppose that the wheelchair thing hasn`t come up yet, and I do wonder when it will. So, I totally and absolutely understand the feelings.
we are females, are such a product of our men. we don`t feel sexy or feminine in a wheelchair, or using a cane, or having to wear a brace or whatever. If you are not like the pictures in the magazines then we don`t feel pretty and feminine. well I also have to say, THIS IS BUNK !!!!!!
We are a feminine and as pretty as we want to be. We are WOMEN and we are cool and we rock. Our men couldnot get along without us, and there is no reason that we should beel the way we do.
So, a challenge.... ladies.................. let`s try this week NOT TO BELITTLE ourselves because of what we can and cannot do. Let;s do something for ourselves, to feel feminine and pretty. Even if it is just to paint our nails or just sit and comb our hair and put some cream on our feet.
THAT IS YOUR CHALLENGE LADIES...!!!!!!!!!!!!!!! are you ready for it.......
Cheers to us women,
(sorry this isn`t really wheelchair comments, but sort of...) xoxox
Sumana - this is about manual chairs. I do have a scooter, too. I like it much better than the manual but, for now, I cannot really take it anywhere. I had/have some obstacles in my way. One is I couldn't fit it in our car. So I have just recently got an SUV. Second obstacle is a lift for my vehicle. My son (he is a machinist and a welder) is making me one right now. :)
When that is done I will be able to transport my scooter. Though I have found that I am a bit more limited with my scooter. For instance, a step up in the threshold of some businesses. I can get around that in manual chair but not scooter.
I have a question about chairs. I don't think I am there yet. However, I always have to push the cart in walmart, so I can lean on it. I have severe tingling, burning numbness in my right arm, that I don't think I could use a cane. I am sure I could use it with my left hand, but then I wouldn't be able to get items with the right.
I have noticed lately, that anytime I have a busy day.....I pay for it the next few days.....so maybe a chair would help in that area. But I am still trying to wrap my head around being diagnosed with MS. Thinking of a chair really freaks me out. Also, only a handful of people know of my dx....I can help to think, what would they think if they saw me in a chair.
Somedays I think I walk pretty normal, and then others, I am shuffling and my feet are not clearing the floor very well. Then I get the sudden spasm/spasticity in my calves that comes out of nowhere. Not to mention the loss of balance that has me grabing the walls or furinture all the time.
Daisy - I am undiagnosed. Not that that really matters when it comes to the topic of wheelchairs. Several months back someone posted a link to a page that someone was explaining about how her lupus affected her daily life. She uses spoons to explain it. Maybe someone else will remember it and post it. It was an excellent explanation and one I still use today to explain to people about my energy level.
Basically she was saying that every morning she started out her day with (I think) ten spoons. Different activities cost her a spoon or two. When she ran out of spoons, that was it...she was done for the day for doing much of anything.
With this in mind, a wheelchair *may* allow you to retain a spoon or two on your busy days. I know it does for me.
Accepting a wheelchair into my life was a really hard decision for me, as I am sure it was for many others. I still don't feel comfortable with the thought of requiring a chair and it has been two years for me.
In my opinion, from what you are saying here, you would benefit with a mobility aid, if only for those busy days. But it is an extremely personal decision. And, I believe you will know in your heart when it is time...
I have read the 'spoon theory', it is great, and I was really excited when I read it, because I felt like someone had finally put words to how I feel.....but I was never able to describe it accurately.
Hi there. I use a Power Chair as I cannot manually move a manual chair. My arms are too weak to use them that much. But I sure wish I could get my Power chair in a vehicle. I don't have that yet. I guess we would need to get a different vehicle and lift.
Or buy another one that is portable...sorry this is about manual ones...but I wanted to add what if you have weak arms.. how difficult is it to use a manual one? Do you need strong arms?
Wobbly - for me, I have weak arms with my right being worse than the other. I have found that the fatigue I get in my arms is easier to deal with than the fatigue and weakness in my legs. And it is like almost never that I go anywhere alone (eye probs stop me from driving) so if my arms get too tired I either take a little break or have someone push me for a while.
I don't know if it would be the same for you or not...but you could try it out and see, maybe?
I do not mean to sound cavalier about this. I struggled with the idea of using a chair. I just knew I was suffering more without it than I was embarrassed with it.
Mine is a manual. I am not having much trouble above the waist, so I want to continue to use my arms as much as I can. I use a scooter when I am at WalMart, etc.
I bought my first one that is used off of Craig's list. It turned out to be a God-thing, as it fit me almost as if it had been made for me. I just loved it for comfort, and ease. Unfortunately, a Delta Airlines baggage handler wrecked it when I flew to family over Christmas. The blessing for me is that in about an hour I will be picking up a brand new one fitted exactly to me. The chair sustained so much damage from the mis-handler it was cheaper for Delta to replace it. My original one has a great deal of custon work on it, right down to the tires. So, they have to replace it to match it exactly, even the bright red.
I do not think about the feminine vs. unfeminine thing. People really do not look at the chair, they look at you. If I want to get all girly and dress that way I can not think of any of my friends who would say, "Nice dress Beth, but WOW look at the color of that chair." Please let that go. The people in your life love you whether you are standing or seated.
Cool topic! I occasionally think about it because my legs are sooo weak and tired soooo often! I'm not using a cane or any other assistive devise on a regular basis. I do use a hiking staff when I know I will be on unstable terrain. I keep it collapsed in my car.
Julie S. has a similar blog/thread on ms.about. There are a number of insights on this very topic (if you need more opinions). Most of the feedback is positive.
I personally think I would find a w/c more freeing than defeating.
it is sometimes hard to vividly rememeber the other life i led. the independant me who could go somewhere alone. the me who could run in the p.o. to mail a package or not have to look for an elevator to get to a second floor or map out a stratagy getting through tight store displays.
And rememebr the feelings I had going out the first times in my chair.I rememebr thinking , my secret was out, no hidding anymore. It has been almost seven years now and It is my life and anyone that knows me now knows my chair is my legs.
And when someone bumps into my wheels whithout so much as an acknowlegemnt, i tactfully let them know they just stepped on my foot:)
i do rememebr the first outings, not that i was emabrassed , but hhaving to explain over and over.
IT WAS SO FREEING! No more struggling to make my legs move, no more white knuckles holding onto to the shopping cart praying i could just make it without passing out or falling.
It does have it's perks....anyone taking me out knows they will have 'redcarpet' treatment...doors helld open, front row seats, someone to hold their bags, and a place to hang their purse:)
Don't get me wrong, I often long for those good ol days.
to answer your q.uestion..for me ii do not have strenght to stand alone, I havee no balance (i can fall over just sitting so armrest are a must,) I have orthostatic hypotension (o.h. blood pressure plumits when standing), i am not coordinated enough to walk and sometimes freezing of gait (legs 'stick' and can't get um started. sensory (pain, numbness etc.)thankfull is not an issue for me.
I am so glad for todays tecnology and chairs available with their cushy comfy seats! I would have dreaded being in a chair all those eons ago that were just a chair with wheels.
It is sad we have to look for rsome type of validation to make it seem alright.
I believe anyone struggling inside with this very difficult issue, wether it be a cane, cruthes,walker or w/c, probaaly already knows in their heart their answer whetherr it is their 'time' yet.
I am undiagnosed still, but I have a wheelchair for going out. I love it. I couldn't believe the freedom it gave me. Mostly I use it for leg pain and fatigue. In the past I would avoid stores like Costco or Walmart. Most times nowadays I can't even "run' in for something at the grocery store.
The one problem I have is if I'm out with just my husband. He doesn't mind pushing me, but than we can't use a cart. And the electric courtesy carts at Walmart and such are too painful for me to steer. So...one day I guess I'll need an electric chair. When my kids are with us it doesn't matter as one of them can push me and they love it! I'm sure people are saying "crazy reckless drivers" but everyone needs some fun!
One thing I find about people though, is they're really nice when your sitting, but if you stand up they look at you like your some kind of fake!
Hi, Sorry if I offended you, I meant no disrespect by my comment about the femininine thing.
I meant is as an inspiration and only that. I kow that when I use my cane , sometimes I feel less feminine, ( I know that is my thing),., but I know there are other people out there that feel the same way.
I hope that I did not offend anyone else, I will be quiet in future... and keep myt opinions to myself. I was just trying to make someon'es day, and inspire us all to be who we are, and bot to be a cookie cutter product of something else.
What irritates me is that medicare will pay for the chair but not the stand to go on the back of your vehicle to get YOUR chair to town so you can use YOUR chair........they are certainly not cheap! It's like they want us to stay home.........
Anyone find a good source of inexpensive holders that fit into your trailer hitch box?
Candy - I took your post as inspirational and uplifting. I responded to the other thread (with my name in the subject)...go read it, please.
And I don't think you should keep your opinions to yourself. That's what makes humans so unique...we all think for ourselves and don't always have the same thoughts, feelings and such as others.
So, if using your cane makes YOU feel less feminine, then by all means, do something to make you feel more feminine. And, I agree that you are probably not the only person who feels that way.
For me, it isn't a feminine thing. It is more of a "less than whole" kind of thing for me. A loss of independence. And I truly hate when I get pity. Obviously these are things I need to work through, which I have for the most part.
When I first got my chair, these things consumed me. Not so much anymore, but it does peek out every once in a while.
Sarah - I had the very same complaints as far as scooters and lifts. I have had my scooter for about 5-6 months now and have taken it outside (except for rides around the block with my dog) a total of two times. :(
My son is actually making me a stand for the back of my vehicle. It cost me a total of $200. But, he knows what he is doing. I caution you to be very careful if you go this route.
There is no way I would be able to afford paying retail for the same thing. I know of many others in the same predicament and that is unfortunate...
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