My walking is starting to get bad and I have been told by the doctor that I need to start using a walker or a cane. There something about that that makes me get so mad and don't want to use one. I mean i'm only 25 and I know that I am not like normal 25 year old. But I just want to try for as long as I can not to have a walker or cane. I mean I use a shopping cart when i go to the store. If I am really bad I use the wheelchair and the looks that I get in the store are all ready bad. I don't like using a wheelchair as it is and I don't want to have to be in one all the time but just for when I go to the store sometimes is ok. I just wish my body would listen to me and stop changing. I feel like a prisoner in my own body and my body is just doing what it wants and I cant do anything to stop it. Am I the only one that feels this way?
I once felt this way about not driving or using a cane then forearm crutches then a wheelchair but when I got sick and tired of falling and getting hurt I had to swallow my pride and use the tools available to me. It doesn't really matter if I accept my disease and the FACT that I can't do things the way I used to. it's going to happen any way but Life is much better when I do accept it.
Hi Anita!
Just keep yourself safe whatever you do.
If you do eventually decide to carry a cane to prevent wobbling around,
hold it in the opposite hand to your worst affected leg.
I’m right handed and have automatically held the cane in my right hand.
But, my right leg gives me a lot of pain and over time I’ve made this
worse by putting all my weight on that side by leaning on the cane.
A Neurophysio gave me core strengthening exercises and strongly advised
holding the cane in the other hand.
This won’t be easy to remember, habits are hard to break! xB
Anita,
I know exactly how you feel!! I have been fighting the use of a cane for 3 years...now I really need it most of the time and honestly, it gets easier to accept. Of course, I am 59, not 25 years old. Sometimes, on a rare day, I can actually go out without the cane, but I leave it out in my kitchen just in case. Accepting the use of a cane or walker is not easy. Just know that you are not alone in how you feel. A big hug to you from where I am!
Hi Anita
No your not alone don't worry, I'm 45 and mobility got really bad about 3 years ago. I'm like you I know I should at least use a cane/stick but am trying to avoid it for as ;long as I can. I have givem somewhat now and finaly have a disabled persons car badge letting me park for free right at the front of stores that I'm going to.I used to run, swim and mountain bike a few years ago so I do understand how frustrating ataxia can be.
I feel you have to adapt to the loss of mobilty over time by finding new things that you can more easily do. The worst thing I find with more inactivity is keeping the weight stable. I am on antidepressant to help aswell, don't know if you are?
Please don't feel alone, best wishes
Martin
I feel exactly the same way
Ditto on what tumbles83 said. Do what you must to stay safe. Sorry it has happened at such a young age. Talk to your docs about depression, and try to stay strong.
I relate to your concerns so very much. I am much older than you,but the issue of surrendering to a cane or walker looked like an abyss to me. I felt like I would be looked down on and judged if I used them. Funny, I didn’t realize my falls were judged even more harshly,“she must be drunk”. I finally got a cane to only use in my home and found so much confidence while using it, I quickly took it everywhere. They come in great colors and designs so I felt less stodgy with my zebra striped cane. Eventually, the cane did not give enough support as evidenced by more falls. I fought the same mental battle with it, but the sense of security more than makes up for it. I can sit on my walker as well which is a God send on tired days. Of course, I still hope for a discovery to be made freeing me from this hardware, but in the meantime, it works for me. I do make an effort to respond if a child is staring. I smile and tell him my legs have the wobbles so I get to use my magic wheels. They usually smile. Maybe they will not be judgemental adults. All the best to you.
Hi Anita,
You are not alone in thinking like you are. The two hardest things for me once I was diagnosed was learning I had to ask others for help and using a walker. I have gradually gone from a cane to a walker. Just know, you are not alone.
I have alluded to this in the past, but when I sit down on Skeeter, I get this overwhelming, calming sensation. When I'm scooting, there is at least a temporary reprieve from any potential fall. I'm used to falls being an inevitable part of life and breaks (break as in "pause", not "fracture") from that are welcome. The perfect fall (aside from none) is one where no injury is incurred, there are no witnesses, but first responders are at hand if required. It's not that everyone hasn't fallen for one reason or another, and people are quick to offer aid and assistance, but it's embarrassing to the fallee and distressing to witnesses! I'm happy to take responsibility for being clumsy, stupid, drinking too much wine–even the "I just fell" fall. I just don't want to share responsibility with anyone, unless they pushed. It is my party...
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A cane works for knees, hips & legs |
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Trekking poles |
Initially, to aid in staying upright, I used a cane, but I thought trekking poles were a better solution because my problem wasn't unilateral weakness, but bilateral imbalance. Trekking poles forced me to stay centered, stand upright, strengthened my core, and didn't look as debilitating (at the time, it seemed important) as a walker. They didn't help prevent falling backwards or give support when going up a curb, but were a good interim step for a couple years. Airline security was a consistent nightmare. "Lady, you'll have to check these ski poles." My personal favorite– "Are you going hiking somewhere?"
Earl would patiently explain that the trekking poles were being used as an assistive device, I needed them, they would fit through the security x-ray, and at the same time, manage to prevent me from saying or doing anything inappropriate.
A rollator/walker removes all doubt that the user has disabilities, and when I realized I was avoiding certain activities and settings, I moved to a 3-wheeled Winnie rollator. What it lacks in stability, it gains in maneuverability and collapsibility. More importantly, it relieved much of the terror I felt when out. It forces me to distribute weight evenly (I do), stand up straight (I don't), and lighten up on the hands (I try). A death-grip on a rollator doesn't enhance braking, safety, or mobility. Skeeter affords me the freedom to get out, cover some ground without fear of falling on my face, my butt, whatever... (I know I've probably already said that in an earlier post); that's my poor memory.
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Winnie Rollator |
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When I exercise upstairs, I go for stability |
A word about "looking disabled". I appreciate how difficult it is to admit you need any assistive device, but it beats getting picked up off the ground frequently. I had to get over my reluctance by admitting to myself that I do have physical disabilities, and to have people recognize that has more advantages than disadvantages. At every step, "Getting it out there" has served me well. Before I used a cane, people assumed I was drunk or clumsy (my self-esteem couldn't handle that for long). With trekking poles, they were never quite sure. My Winnie Rollator may look more debilitating, but it actually enhanced my independence, especially indoors. And Skeeter? No question that I have disabilities; it's interesting to watch people scatter, thinking the disability might be visually spatial!
It took a lot of coaxing for my PTs to convince me to use a walker. I was so stubborn -- I'd even need to use peoples' arms in addition to the cane if I had to when going out (couldn't go alone), but I still wasn't happy about it. Since I started using it, it's much easier to go out, and I can be out that little bit longer.
It really isn't fair having to use it -- started when I was 23, now 24. It's scary, and people look at me differently. I try to remind myself that at least I'm still able to be upright and get around, even with help. :/
I know how you feel.
NO, I feel the same, I refuse to use the walker, but is much better than walking without it, you don't have the risk to get hurt and break your bones, it's easy to say because I am 66, do not give up they will find a cure keep looking for one
thanks everyone for all you advice its nice to know that I am not alone out and that there are other people who feel the same way I do
Hi Anita,
Declining abilities; need to ask for more help and use additional tools - at a young age.
Differences are a strength/positive, not a weakness/negative.
http://forum.livingwithataxia.org/forum/topic/show?id=2508026%3ATopic%3A127932&xgs=1&xg_source=msg_share_topic
I can’t blame you for not wanting to surrender to use a walker; there are negatives - the obvious of not being able to do what you used to do - in the same way, anyway - and society’s perceptions and false assumptions.
However, there are some positives. For example, a walker gives others a heads-up that balance is an issue for you, or something is different so help if asked, etc.
As JC said, “different” is a strength and a positive although we’re prone to think that “different” is a weakness and negative. It’s easy for us to go down that path that this difference is a negative; but we MUST remind ourselves - for me, I need constant reminders - that this difference is a positive thing. It’s easy to go down the incorrect path that “different” is a negative thing; please remember, though, that there’s a different path, if you so choose, to see and seek out the positives of being different.
I’m now a part-time wheelchair user and a part-time rollator/walker user which allows me not only less risk of falling with the use of these tools; but I’m also able to focus on other things besides walking, talking and listening while walking, etc.
I’m half the age of typical users of walkers and/or wheelchairs due to declining health with older age, so I get the curious stares, and, in turn, I can create great insecurity about myself -if I let it/choose to go that route; however, I try to keep things in perspective: 1. compared to where I was just years ago (completely paralyzed) to where I am now, it’s an honor to be mobile no matter what assistance I need to get the job done; and 2. constantly reminding myself of my strengths and abilities - which, in great part, is due to these assistive tools that I need to use.
I saw this video on FB: http://unlooker.com/selfie/.
Even though it doesn’t address use of assistive tools directly, it brings up how we tend to compare ourselves to others - no matter what our “issue” is. I guess it’s good to know that this is a universal problem. 
Also, this TED presenter makes a great point, reminding us that it takes all “different” types to make a whole:
http://new.ted.com/talks/temple_grandin_the_world_needs_all_kinds_of_minds
For what it’s worth, I wish you peace now, in your transition to the use of a walker, and forever.
I think that all of us ataxian's struggle with this one. I know I do too!
I agree about making sure your in a safe situation and use aids if need be. But also I suggest (because that's what I do myself is always push yourself even a little bit to do better than yesterday, because I can't seem to give in either so I get that) is to continue to move what you have to try and get it stronger so if you do have to use an aid you can still be strong while using one. Even if you end up being in a chair there are stretches and arm weights you can always do something on a regular basis. It also helps our emotions. We can gain being more positive with the endorphins we get just from moving more. There is a big study that just came out about moving more how it effects the brain more than they thought before (in Neurology now Jan issue)
I know from first hand that emotions of a person having ataxia plays a huge role. Try to stay and be as positive as possible while you continue to push yourself even a little bit to keep what muscles you do have and try to make those stronger.
I noticed a little decline in my walking because I got a great report from my Nero so I slacked off cause I thought I could. Well I started realizing I wasn't walking as well as I used to. It didn't take long either. So I'm walking more in hope to get back what I let go off. I'm hoping to build up and go past what I had. I latterly am walking on the treadmill (I hold on) every other day and walking with a friend (mostly wobbly right now but I have her close to grab on to if need be). I also am taking Yoga for balancing. I notice (the instructor mentioned it also) that because of the fear of falling I don't hold my body as relaxed as when I'm closer to a wall for the just in case I tumble over. Just having something close by helps mentally.
So I think a little bit of denial isn't that bad it does keep us pushing our self a bit but there is a fine line. Only by trial and error (I think) you will find your boundary line of what you can and can't do.
Try not to focus on what you can't do and just find a way to basically get to the same outcome just differently, that's all. :0)
Anita,
Walker or not walker? The answer is simple. Do what you need to do to keep safe. Whether you are young or old,never mind what others think .
I believe that most people who look at someone in a wheel chair or walking with a cane or a walker, feel compassion and kindness towards him or her. Isn’t that the way you felt before your ataxia when you saw a handicapped?
Most of the time, people run ahead to open doors, strangers nod and smile as I walk by them.
If they steer away from you, look at it positively : it is to avoid being in your way and making you fall.
It is not always easy to be positive, but it sure makes life easier and more pleasant.
Hang in there and best wishes to you.
schumant said:
I have alluded to this in the past, but when I sit down on Skeeter, I get this overwhelming, calming sensation. When I'm scooting, there is at least a temporary reprieve from any potential fall. I'm used to falls being an inevitable part of life and breaks (break as in "pause", not "fracture") from that are welcome. The perfect fall (aside from none) is one where no injury is incurred, there are no witnesses, but first responders are at hand if required. It's not that everyone hasn't fallen for one reason or another, and people are quick to offer aid and assistance, but it's embarrassing to the fallee and distressing to witnesses! I'm happy to take responsibility for being clumsy, stupid, drinking too much wine–even the "I just fell" fall. I just don't want to share responsibility with anyone, unless they pushed. It is my party...
A cane
works for
knees, hips
& legs
Trekking poles
Initially, to aid in staying upright, I used a cane, but I thought trekking poles were a better solution because my problem wasn't unilateral weakness, but bilateral imbalance. Trekking poles forced me to stay centered, stand upright, strengthened my core, and didn't look as debilitating (at the time, it seemed important) as a walker. They didn't help prevent falling backwards or give support when going up a curb, but were a good interim step for a couple years. Airline security was a consistent nightmare. "Lady, you'll have to check these ski poles." My personal favorite– "Are you going hiking somewhere?"
Earl would patiently explain that the trekking poles were being used as an assistive device, I needed them, they would fit through the security x-ray, and at the same time, manage to prevent me from saying or doing anything inappropriate.
A rollator/walker removes all doubt that the user has disabilities, and when I realized I was avoiding certain activities and settings, I moved to a 3-wheeled Winnie rollator. What it lacks in stability, it gains in maneuverability and collapsibility. More importantly, it relieved much of the terror I felt when out. It forces me to distribute weight evenly (I do), stand up straight (I don't), and lighten up on the hands (I try). A death-grip on a rollator doesn't enhance braking, safety, or mobility. Skeeter affords me the freedom to get out, cover some ground without fear of falling on my face, my butt, whatever... (I know I've probably already said that in an earlier post); that's my poor memory.
Winnie Rollator
When I exercise upstairs,
I go for stability
A word about "looking disabled". I appreciate how difficult it is to admit you need any assistive device, but it beats getting picked up off the ground frequently. I had to get over my reluctance by admitting to myself that I do have physical disabilities, and to have people recognize that has more advantages than disadvantages. At every step, "Getting it out there" has served me well. Before I used a cane, people assumed I was drunk or clumsy (my self-esteem couldn't handle that for long). With trekking poles, they were never quite sure. My Winnie Rollator may look more debilitating, but it actually enhanced my independence, especially indoors. And Skeeter? No question that I have disabilities; it's interesting to watch people scatter, thinking the disability might be visually spatial!
I have a 4 wheel rollator, do you think the 3 wheel is more or less sturdy than than the 4 wheel?
I was on (and still am in my home) on a three wheeler. They are much easier to navigate around, but not as stable. I finally switched to the 4 wheel Jazz after i fell in Copenhagen last year and broke my elbow (break number 9) . It’s true that you have less stress and more independence. Do what you need to…and keep safe. You never know what fall might set you back for a long time. Sharon in AZ.
My money is so limited at this time, so being that I already have the 4 wheel, and it is more seems more stable, I will stick with that....I just loved the fact that the 3 wheel was more compact for carrying in the car. I worry about falling, and have to be extra careful, even with the walker. I have had a broken knee, and surgery, and have broken both ankles, so broken bones are not good, but, ironically, none of the breaks were Ataxia related.
Thanks for the info.
Kathy....in San Diego