I have a second question, how does one get over one's self and use an assistive devices if/when needed. I have noticed that when I am having spasticity/left leg weakness I am okay waking short distances, but long distances (stores, the mall, etc) are a different story. I do notice that a cane (actually I use a forearm crutch because I feel less off-balanced) helps, but I am so embarrassed that if I am that "gimpy" I just stay home and stay in my room. I don't have this issue all of the time, only during flares. This is really only my second flare and my first since being diagnosed. I was only diagnosed last month.
I have an 8-year-old child and I haven't told him much, only that I have something that makes me tired, but that I am getting medicine soon to feel better. (I haven't started DMDs yet)
that's a tough one - I imagine everyone finds their own threshhold in surrendering to using adaptive equipment.
I would ask you to think of what type of example you are setting for your son. If he required special equipment, would you allow him to hang out in his room, avoiding the world? Or would you encourage him to stay engaged and get out there and live?
Good luck with working through this dilemma,
A cane was never enough for me. I started using a walker at home because it was no longer safe to not use one. My husband travels and I found myself on the floor too often. For longer distances I use a wheelchair. I don't even hesitate today. I did make a cute sign that says, "It's MS Girlfriend" then at the bottom added "...enjoying the ride". I did it because I was sick of the looks from women twenty years my senior. I had even heard one of them make a remark about some "lazy" people. Today I have added both a scooter and motorized chair. There are days my right foot won't lift enough to use a scooter. I am way over what other people think. I am going to enjoy my life and if it takes those things...so be it.
I have struggled with this very question. First, it was a cane, then forearm crutches, the AFO's I must wear for my bilateral footdrop, and finally the wheelchair. It even came around again this week when I had to begin wearing larger AFO's.
The feelings come each time, but ultimately I had to realize that I was spending far more energy just trying to get from point A to point B, and I could enjoy myself so much more if I let the "stuff" help me. The biggest challenge now is keeping other people from helping too much.
The first time I used my wheelchair I cried at the idea that others would see me like that. Then, one of my very wise friends took me aside, locked the wheels and said something quite profound. She said, "Beth, if you want to stay at home so no one can see you like this you know you can. I think, though that you will have a far better time if you just give in and wheel it. We do not care if you spend time with us standing or sitting. We just want you to spend time with us."
I sobbed, and realized how right she was, and that it really did not matter to my friends. I just needed to set aside those body images, and refuse to allow life to pass me by. For me it has become a matter of giving myself a few days to wrap my head around these things. My friends have now been given permission to remind me any time I start to slip back in to my old thinking.
I am sure you will, too. Oh, and as for your 8 year old, he is so equipped to handle it because that is just the way kids are taught in school. The students I work with are so blind to my wheelchair or any physical disabilities. Some will ask why I need the chair, but mostly they just want to touch it or look at it.
I really like the sign idea! It also made me smile which I have NOT done today. I sort of wondered how I would handle the wheelchair things. I know for sure if I had to go somewhere like an amusement park or the zoo today (which I don't, but If I did) I would be SCREWED! I am in a flare that I can't seems to be taking longer to come out of and my fatigue is unreal. It most likely will not be permanent thankfully but it's still frustrating none-the-less.
I did select Purple forearm crutches. Purple is my favorite color. Although they look more fuchsia. I only need one. It is actually harder for me to use to since all of my weakness in on the left side, I have a hard time using the left one. I am pretty stable with just the right one.
I understand getting in the way. I had a hard time with a regular cane. I think because my balance is screwy I couldn't place it right and would putting it on or in front my foot and trip on it. I didn't fee like I had enough support on bad days. On good days, I don't really need anything.
I guess I really don't have anything to complain about. This is just a flare and eventually things will improve. It's just taking longer than my last and only other flare and I have never been good at being patient.
I use a cane sometimes. The internalized feelings about using a cane hurt less than the physical pain of falling down. It may also have to do with the fact the a grew up with my dad using a cane because of his visual loss (diabetic retinopathy,) so it may be less of an issue.
Definitey dazzle it up w/your favorite color and look and be proud! Your doing it for you! Heck w/anyone else.
I know you'd not be embarrased to see someone in a cane or a wheelchair due to the fact your a good person. So, carry that thought w/you and disregard any thoughts or looks from those who'd look down on you in the 1st place.
Ditto! you have to think of you!! not many others will-get it- so i want glitter on mine now its just yuckey! but years ago i saw women in chairs -and get right up ,like to go to bathroom! well i didnt know then,but was never one to make fun, never done that-people can be cruell just because they dont understand. i thought they were just lasy!! lol!! yeh its human nature, big hugs!! tick plus i was a kid.
Do you think it would be more embarrassing to be seen with a cane or to fall down in a public place... This actually happened to me... I needed my walker and I knew it but I thought surely I could get by with the cane and I wouldn't stand out so much...
Needless to say I ended up falling in a very crowded place where a lot of my friends where standing there watching... After I went through that ordeal I decided right then and there that I didn't care what others thought, I was going to do what was best for me...
Please use what helps you get around the best... Falling down in front of a lot of people is far worse than a cane, walker, or wheelchair... Trust me I know!!!!
Well I seem to be walking a little better today, hopefully it continues. As far as falling, luckily I have only bit it at home so far. But one of my friends with SMA had her can knocked out from under her last weekend by a child running down the ramp as she was leaving the hockey arena where our kids play hockey. She fell HARD on the cement and it scared me. She hurt her knees and hand and thumb. I was very worried about her and it sort of scared me because I know that because I am in a flare my balance and muscle strength are compromised.
I really do appreciate the support. I have a lot of things to keep in mind now that make a lot of sense. Hopefully my balance and strength improve over the next few days, but if I do go into another flare I need to accept that it is better to do what is safest.
I went through exactly what you are feeling. I resisted even GETTING a wheelchair for a good year when I really truly needed it. I had a walker that I would use at home....but never in public. When I first got the walker, I did use it publicly for a bit. But I found that adult responses were hurtful. Kids responses were so innocent and didn't bother me a bit. I couldn't take the comments or looks from adults as I was already pretty emotional that my body was betraying me. Normally I never cared what other people thought.
I did end up missing out on things because I resisted the aides. My mom came to the dr with me once. This was after me needing a wheelchair for about a year, but resisting it. My mother actually spoke up to my dr about the wheelchair. I was mortified! The dr agreed completely and neither one of them would listen to me and the wheelchair was ordered. I was so mad! lol
I began using the chair in the house a bit. Then I ventured out with it some. I didn't get the same response that I got with the walker. Now it is over two years later and I have kicked myself for not getting it when I should have.
I realized that I was so touchy about the aides because what it really boiled down to was each aide I got, I felt a bit more of my independence taken from me. I ended up going to a therapist for help with acceptance. This helped me so much.
I am pretty much wheelchair bound now. For the most part, I have accepted it. Not completely. I keep telling myself that if I work harder with physical therapy, I will walk again. So, I am holding on to hope. :)
I did put Harley stickers on my chair. Just one on each side. I don't know why but this made me feel better about using it.
So, here's to you....hoping you gain acceptance in some way. If I remember right you are newly diagnosed, right? Have you read the Health Page on Acceptance? It is a really good one. :)
Oh, I forgot, even though I use aides, I hold onto as much independence as I can. I roll myself in my chair. A lot of times people try to help and push me. I politely tell them I can do it. I do feel that independence pull on my heart...and I try to hold on to what I can do.
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