I currently walk unassisted (with the exception of my husband's arm, shopping carts etc when things get rough) but it's not always pretty. I will probably soon have to use something for when I have "bad days". But even when I CAN walk totally unassisted, it looks pretty crazy, even if I feel pretty sturdy. But I constantly get "what's wrong with your leg?" "Did you hurt your back" "have you been drinking" turned heads, whispers etc. I'm pretty proud and not worried about opinions, but I AM worried that someone will think I'm impaired when I have my kids with me. Lord knows I couldn't pass a DUI exam if i was pulled over. Does anyone use walking devices occasionally to counter/explain/cover for your ataxic gait? I will need one some, but not every day but I dont want people thinking I'm drunk with my 3 small kids in tow. I also get really anxious in situations (heavy crowds and wide open spaces) where I dont have anything to grab and think that having a cane may re-assure me. Just wondering if anyone else only uses devices occasionally or just as reassurance to themselves (to ward off anxiety) and to others (to war off stares and whispers)
I currently use a walking device to kinda stop the mean stares or whispering ,I am 35 with 3kiddos and it’s extremely hard having this sickness
I use two canes(hurry canes) on good days & bad. When I feel good it helps keep me straight & my family & friends feel like I am doing better. You just have to remember your doing it for yourself & family not for strangers. The more I can do to be with my family the better. For days that I am really bad I use a wheelchair or a scooter. I am only 44 so I know pride gets in the way. Hope this helps.
I use one occasionally - mainly in the winter and when we are traveling for two reasons: lots of large open ares, and to let other people know to give me a bit of extra time and not to push me. It's really amazing how a cane (or other device) can make people be nice to you! I know I do get stares when I am not using one, but I try not to let that get to me. Roadside sobriety test - all I can say is I hope the officer has a portable breathalyzer since walking heel-toe in a straight line is not an option!
I use a volaris rollator. I am still working and use it everyday. It takes the anxiety out of my day. I denied it for years but too many bad falls and stares drove me to realize it is what it is!! I am supper scared to fall again. I'm very stubborn. Took my volaris to DC and rode the metro and walked around the National Mall. I think my husband misses holding my hand though. Please use something so you don't get hurt. Your kids need you!
I use a walking stick instead of a cane. It makes me feel more stable. Works most of the time for me. Good luck with what you choose. Allie is right in saying, get so etching BEFORE you get hurt!
Kathy
First of all, tape record yourself...See what others see...You'll probably be surprised to see that you're not as steady as you think. Secondly, here is a copy off something I posted in another forum
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PUT YOUR PRIDE IN YOUR BACK POCKET, AND SAVE IT FOR A RAINY DAY.
Ask for help, use an assistive walking device if you need it, stop being embarrassed, people aren't staring as much as you think. Too many are sweating little, inconsequential things. Live life the best you can, cuz everyone else is. If it's not good enough, it's on them, not you. Chances are you'll probably never see them again.
Use a walking stick, walker, etc., when you are in public. It does not help a lot, but lets people know there is an issue....they will get out of your way and even hold the door for you. Most of the time, you'll get to the front of a line, get priority seating, special treatment, whatever. Call it disabled, handicapped, whatever you like. If you don't want help, say "no thank you", but stop looking like a ruptured chicken, and take advantage of what's out there.
Stumbling, tripping, spilling stuff, dropping stuff. A waitress will gladly accommodate whatever you need, an attendant will pump your gas, someone will do for you and feel good about it, just like you do when you help someone else.
The only thing that I can say is service dog, it changed my life ,
when I started to train the family pet to do tjings for me,. People began to slow down and it was visible!
Maybe for those times, use a wheelchair. The public seems to accept people in wheelchairs without judgement. Plus maybe the kids would like to participate in pushing you around in it.
Hi - I do, but out of necessity…which presents a whole different set of issues; however, if you need a walking assistive device to keep you safe, I’d prioritize (as well as I’m sure that your kids would prioritize) your safety in getting around first and foremost.
Hi, I would use a cane if I were you, it helps you from falling and tells others, I'm doing something about this issue. I have SCA plus PN and Myoclonus. I can only walk about 20 feet wobbling all the way. I always use my cane when I attempt to walk. I have 2 different types of walkers, but now I most use a scooter as I tire out so quickly. I live in a small town and everybody here knows how I was before this hit me full force. My condition is progressing rapidly so at least people in town here know I do as much as I can to keep myself safe. I do not drive any more. I am 55. I am working on getting a service dog as well.
I was were u are now. My adult sons arm n shopping carts but I finally gave in and have a rollator n feel safer with it. I tell my grandson it’s my “4 wheeler” n he thinks that is pretty cool. I am getting use too it. After many falls n near serious falls I decided better to be safe than very sorry. Don’t want broken bones hospital bills etc. I still use shopping carts at store n now shop at places that have cafe r sitting area in store in case I need to rest. You could put drinks n snacks in rollator n kids will think that is cool also. My grandsons like their snacks. Get a disability placard so you can park close to store. The shopping carts are usually left close to that area also so u have easy access to cart.
I also have an adult son with disabilities I look after like the children u care for. As far as driving I have read on here where people get a letter from their dr saying what they have in case they were stopped. I also have a Medic Alert bracelet for myself n my son in case we r in medical crisis.
I use mostly forearm crutches,I have a small house to move around in. My movements are very slow like in slow motion when I start to walk, I walk like a lizard in those commercials very slow. My problem I think is if I am shopping am I going to make it to the mens room in an emergency so every time I walk by a bathroom I stop in. I bought a power chair for the van so I could do things but I don't go anywhere except outside to plug in the chair,I has come in handy a few times but I only use it if I really need it. I don't think I could get into any fast food restaurants with my machine and when shopping I use the stores machine for the big basket. In the house I use a cheap walker Kaiser gave when I move around when I carry things.I also have a walker I keep in the van for the smorgesborg restaurant but haven't gone there for a few months.I bought a 3 wheel for the back yard and that really is a godsend. Jerry
Hi
I use a collapsible cane. This way I always have it with me in my purse if I need it. Got a Handicap placard for my car. The doctor said absolutely. He quickly signed the form. I also have walking sticks and use a backpack purse most of the time so I can use my cane or walking sticks. I am terrified of falling as I have had a knee replacement and hip replacement and don't want to injure those. My favorite is the collapsible cane (buy on Amazon) as it fits in my purse when sitting down somewhere. When having a good day we all know it can go bad in a few seconds I have the cane in my purse. Grocery stores, movement, large crowds, stress, etc. bring on an episode quickly. I do wear a medical alert bracelet. It is important in case something happens. I also could not pass a DUI test, but if you write the National Ataxia Foundation they will send you cards to fill out that you can present to a police officer if you get pulled over. These are free for the asking. I just e-mailed them my address and they sent me 3 cards. I filled them out and lamented them. Always have one in my wallet by my driver's license. Before starting to use a cane people used to ask me the same questions you get. When asked if I have been drinking (rude people) I just look at them and tell them I am having a minor seizure. That really shuts them up quickly! It is easier to tell them the little white lie then try to explain what is really happening. (none of their business anyway).
Good luck to you. I hope you decide to carry a cane regular or collapsible. I am not ready yet to go to a rollator and hope that is a long way off.
I TO HAVE A PROBLEM WITH BALANCE 2 TIMES I HAVE BEEN TOLD WHY DO YOU COME TO THE MALL DRUNK I HAVE TRIED TO EXPLAIN TO DEAF EARS I HAVE HAD THIS CONDITION SINCE 2012 IT DOES NOT GET ANY BETTER . I DO US A CANE AT ALL TIMES THANK YOU
I agree 100% with Jonas. Never mind what others think. Most people are kind and helpful anyway (my own experience). Do what you have to do. I have said before that I do not really need a cane, but I take it anyway. It inspires respect from people in stores or the street, they get out of your way. Use what you need to when you are with your children: a cane or a Rollator. You will feel better and more secure. It could be frightening for them to see you fall and get hurt.
Like Jonas said, put your pride in your back pocket. There is no shame in using a cane or anything else.
Take care and best wishes!
PS I answered this post this morning, but do not see my answer, so I will repeat this: a PT who lives in Alabama told me that policemen now have to ask someone that they suspect of being drunk if they have a medical condition which makes them appear that way. Forgot to ask her if this was an Alabama law or all over the States. Get a note from your doctor, or some type of medical ID like a bracelet, necklace or dog tag…
Hi mommy medic,
Most of the time I am fine walking but lately I have had some duseys. Like I walked into the supermarket where my wife was shopping just to buy a lottery ticket and as I approached the service counter everything started to go so that as I arrived I could barely hold on to the counter. I almost missed the counter top as I reached for it. Everybody took a step back and they looked at me as if I were drunk. "Are you OK?" was all they said but I saw in their eyes what they thought. They seemed afraid of even talking to me. Last Sunday I went with my wife to have a sandwich and totally collapsed. There was one of those beams that prevent cars from accitentally hit the building. I went for it, missed it, and collapsed against it. Fortunately only my wife was there. but she just stood back, waiting for me to tell her what to do. Her outstretched arm was of no use to me because I was unable to reach for it. I have this since I was 11 years old, so it is nothing new to me, but as I get older every episode gets worse. Also fortunately, my kids are grown up now, but they still think I am crazy for wanting to find out what my problem is. 56 years after my first attack I still have only my own guess for what it is.
I refuse to walk around with any assisting device when most of the time I can still walk upright. If this progresses much more I will need something to walk or get around, but I have made up my mind not to use a walker. I may go straight to a wheel chair.
I have just been on a 5-day coach trip with my 4-wheeled rollator and I have experienced every helpfulness you could imagine. I used it as a seat at tables in cafe/restaurant etc.. it is so much easier to get up from than normal chair with no arm rests and made useful trolley for tray at self service stations.
I am so pleased I took it as I was able to enjoy so much more by using it.
I am now suffering with overdoing things... not as you may imagine in feet or legs but my hands and shoulders .. they of course, took the strain. I have a wrist support which helped and will get another asap for the other wrist.
Patsy/UK/ Colchester
Hi,
Yes I have returned to using my cane to stop the dirty looks and stares because they think I'm drunk. I can walk without one usually although I stagger or drift some. The cane makes my walking more normal, and people instead of being rude, are helpful - opening doors offering to reach things on shelves etc. It's a pride thing - trying to get by without it, but you reach a point where you know it's time to start using it. I just ordered a very unique walker that I can easily fold and throw in the car, behind the seat. It's called a Nitro Euro Rollator. It won't be shipped for a couple of weeks, and was pricey, but it's all terrain, has 10" wheels in front and 8" wheels in back. It only weights 17.5 #.
It has a seat and back support that can easily be adjusted by pushing a button, and has a zippered bag to carry belonging in front. I ordered online. You can look it up by the name I listed. "All Time Medical" has free shipping for it. It will make walking so much easier for me.
Nancy J
I use a cane all the time in public. I can pretty much get around in my home without assistance, but I still lurch and stagger and bump into furniture and door jambs. I recently purchased a spiffy rolling walker, called a Rollator. I think this is great and allows me to go for a walk. It also lets people know I 'm not drunk, that there is a problem that I'm dealing with.
I got the Rollator at Walmart and it was only about $70.00, and it's red!