Walker or no walker

General
21

Winnie

Ugh! more progression, albeit gradual, of my ataxia. The short, nocturnal treks to the bathroom were nerve-wracking for both Earl and me. Being picked up off the floor was getting old and it was time for a more forgiving walker. I loved my 3–wheeled Winnie Rollator, but for all her convenience and portability, I now needed more stability. The primary mission was to be less prone to falling.


My friends gave me back the walker my dad's wife had used. It was foldable, but still too heavy and big. The trouble with a conventional four–point walker in the house, is that it's difficult to go through doorways without hitting the door jam. I have one upstairs I use when I navigate the room or work out on the Wii–Fit, but I don't need to go through a doorway, so it's width is not an issue. The web–based, virtual shopping trip was on (you've got to love technology).

Walker over Wii–fit

I found "Let's Go Indoor Lightweight Walker Rollator" and ordered it because it was the most narrow four–point walker I could find, inexpensive, and lightweight. When it came, I kept going back to the familiarity of Winnie. OK, I over–personify...sue me.

The newcomer


Gradually, I became accustomed to using the new one in the house and relegated Winnie to the garage and car. It seemed to be a good solution while I got to know the newcomer. It was a bit higher, forcing me to stand more upright. Using a walker fostered my "senior hunch". If my mother could see my posture now, she'd roll over in her...ash tray. The advantages of both using a four–point walker and having an indoor/outdoor arrangement soon became clear. I could use Winnie when out and about and that helped me not feel so unfaithful.

But three major pluses that I hadn't given much thought to, became evident. My carrying pouch on Winnie was a long reach down. The new pouch was higher and much easier to reach. Although Winnie came with a small tray, I had to choose collapsability or carefully install the basket/tray combo. The new walker came with a bigger tray that just sat on the pouch or lifted up easily for stashing things. It never occurred to me that tray size was important, but the larger tray allowed me to carry more (dishes, laundry, food) than before. The most significant benefit of the new walker was being able to use, drive and brake with one hand. One–handed manuevering wouldn't be my choice, but sometimes it was necessary. With Winnie's two bike–handle brakes, one–handed anything was courting disaster.

One more small issue came up. I had purchased a collapsible cup holder for Winnie and loved it. It wouldn't hold a cup with a handle or a stemmed glass, but that was OK. Having decided not to cannibalize Winnie, I ordered a universal cup holder for the new rollator even though it wasn't collapsible. When it arrived, Earl installed it for me. It may not have collapsed, but it held plain glasses, mugs with handles and stemmed glasses.

The lesson: I need a cup holder that can carry a wine glass.

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Hear hear! Cheers for the wine glass!! I’m ordering mine today! Sharon

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Hello Anita,

No, you are definitely not the only one who feels this way. I was only diagnosed two years ago and I prefer to not let anybody know that there is anything wrong with me. Even though it can be agony, I will force myself to keep walking as normally as I can for as long as I can. I have realised from reading other peoples comments that this is probably a really bad idea. If a young, at first glance fit person uses a walking aid you do get looked at like "what do you need that for, stop pretending" and also to use one, I feel, would be admitting something that I am not ready to admit yet. I do know that having that attitude is silly.

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Not trying to be ugly, by any means, but sounds like you are in denial, like one of my sisters.....I think it is much better to be safe, than sorry....broken bones are NO FUN!!. I don't like having to use a walker, but I would rather do that, than fall.....if I had a significant other that I could hold on to, that would be great, but I don't.

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One of the hardest things for me was admitting to myself that something was wrong. Before I was diagnosed with Ataxia, my walking wasn't that bad, I could walk without any help, but I began staggering from side to side and even got some comments from people asking if I was drunk. Then I started falling and had to do something. I went to a cane first but then had to get a walker. I haven't fallen since I've had the walker. I agree with all the other comments on here. Do what is safe for you. It's better than hurting yourself.

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Hi Ben,

I have a lot of trouble admitting that anything is wrong too but I am getting less able to hide it than I was. I know that trying to hide it is silly and the important thing is being safe. I am tired of people saying "drunk again, in the middle of the day" I will accept this. I suppose I just need time.

27

There was a time before Skeeter, before a rollator/walker or even trekking poles...

In retrospect, I think I was trying to convince myself that I wasn't noticeably disabled. Although I'm somewhat of a denial advocate, this attitude often got me in more trouble than it benefited me. I actually thought if I acted normally, no one would think something was amiss. They did. People who knew me well, knew right away something was up, but casual acquaintances and strangers just thought I was impaired for some reason. Pick your impairment of choice--drugs (nope), MS/stroke (nope), dementia (not yet), alcohol (probably). But, that just wouldn't do. Pretending that my struggles were only internal and not obvious, wasn't compatible with preserving my self-image.

In the middle of a nice day, I decided to drive down to a local bike shop to buy my husband a birthday gift. I did and drove home. At the time, I had a dog, Lucy, who felt her "job" was to frighten any potential intruder at the front door with her fearsome bark. Never successfully able to train her that not everyone was a threat, I had to close her off in the family room in order to answer the door(setting the stage, here...).

Lucy, the barking menace

About twenty minutes after getting home, three Lake Oswego policemen (must have been a slow day at the department) were at my door because the bike shop had reported me for suspected drunk driving. They were concerned about my ataxic gait and slurred speech. It was time to face up to what Ataxia (even early stages) looked like to others.

Not quite this bad, but close.

I was both embarrassed and mad, but part of me was grudgingly admiring of the people at the bike shop. They didn't know me and could only observe my symptoms and be concerned for public safety. Not everyone has the courage to turn in someone they believe might be intoxicated. But, my wicked witch side won out, so I was mostly indignant and mad.

Stern faced Police: Are you Mrs. Schuman and were you just at the Lake Oswego bike shop? Can we talk to you?


 I thought to myself, "Stay calm Tam, take a deep breathe, don't cry and definitely don't let them see you sweat. You know what this is about and you didn't do anything wrong." Still, when three uniformed cops come to your house, you feel like a criminal.

Rattled Tammy: Yes I am, yes I was, and yes you can. Lucy was going berserk barking and nothing I could do would convince her that I was not going to be shot by intruders.

Cautious Police: Could you put the dog away? I put her in the family room, closed the pocket door, and returned. Have you been drinking today? It was around noon and although I look forward to wine, we're talking evening!

Courteous Tammy: I know what this is about and although I may have appeared drunk at the bike shop, I haven't had anything to drink. I have a type of Ataxia.

I assumed that my explanation would suffice and was shocked when they didn't accept it at face value and leave.

Persistent Police: We need to administer some field sobriety tests.

Now, I watch TV enough to know the tests are probably walking a straight line (can't do that), walking heel and toe (definitely can't do that), stretching arms out to side and bringing index finger to nose (can't dependably do that), and standing on one leg (are you kidding me?). Falling over would be a dead giveaway of test failure.

Heel toe? Gee, I don't think so...

A brilliant thought occurred to me after I informed them I would fail any sobriety tests.

Helpful Tammy: You could call my neurologist or the Movement Disorders Clinic or I could take a breathalyzer test. Yes, I did know they couldn't legally require me to, but I also knew a breathalyzer test would be negative and I was starting to sweat.

Uncooperative Police: We can't do that. Could you put your hands out to your side and alternately touch your nose?


 Angry Tammy: Fine! Consider yourselves warned...

Since this is a common neurological assessment exam, I was pretty familiar with it. I obviously did a passable job, because the police seemed satisfied and left, their standards being much lower than my neurologist's. I had managed to stab myself in the eye only once. But I didn't confess to some random crime I hadn't committed and I didn't cry.

At a hastily made appointment later that week, my neurologist gave me a letter verifying that I indeed do have a Spinocerebellar Ataxia. I made several copies of the letter–one for each car, one for me, my husband, the children, the Lake Oswego police.

My daughter-in-law helped me design a "business" card with my picture and contact information on one side, a brief explanation of SCA (and spelling) on the other. I keep them on me, on Skeeter and hand them out to everyone, whether they want one or not; if they trash it, fine. In the event I'm found unconcious on the side of the road, people know who I am, what I look like, what I do and don't have and while I may appear impaired, I'm not (at least, not necessarily). That little card saves me the need to explain SCA for the thousandth time. I found informing people spares them from asking. Although Skeeter and my assorted assistive devices help a lot now simply by being indicative of a person with disabilities, retailers are relieved to have an explanation. Only a few will cautiously ask, but everyone wonders in silence.

Front

Back

The lesson: Give it up–it shows. People notice.



Caitriona said:

Hi Ben,

I have a lot of trouble admitting that anything is wrong too but I am getting less able to hide it than I was. I know that trying to hide it is silly and the important thing is being safe. I am tired of people saying "drunk again, in the middle of the day" I will accept this. I suppose I just need time.

28

Hi Ben,

Thank you so much for sharing that story it gave me a lot to think of and what could happen if i dont start coming to grips with what is happening to me. I know that it is easier said then done and it still is going to take me awhile to work on it, but your story really helped.

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Anita, to help you put things into perspective, think of it this way: you would not jump in the river if you could not swim, would you? You would not go in subzero temperatures without a coat, would you? Why? Because you would not want to drown or freeze to death, right So why would you go walking without a cane or a walker if you know you are likely to fall…? because you do not want to brake a bone, or worst, if you hit your head, get a concussion!!!
This is not to sound harsh, but to encourage you to do the right thing for yourself and do not forget, “never mind what the others think” . You woud be doing the right thing for yourself.

Take care and good luck.

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Dear Anita, I was diagnosed eleven years ago with ataxia. I resisted using a cane until four years ago, as I "wanted to do it myself". Then, one day I was standing in line waiting to weigh-in at my local Weight Watchers center. I put one foot back to slip-off my shoe, lost my balance, and fell, severely injuring my back. From that day on I started using a cane whenever I leave my home. Unfortunately, I've taken some really bad falls in my home, but have NEVER fallen while using my cane! A couple years ago I lost my balance and fell in my home, hairline fracturing my pelvis. Recently, I lost my balance again, fell backwards and cut the back of my head on the seam of the lower kitchen cabinets. I had a two inch (vertical) cut, and sported a quite a lump and nine staples for several days. When I'm out and about using my cane, people are very kind, holding doors open for me, which I greatly appreciate. Service people have even offered to carry purchases to my car for me (and have). My best story: I had a takeout (food) bag in my left hand, my cane in the right hand and a man (talking on his cell phone) who was walking by, asked if he could open my car door for me (talk about multi-tasking...,ha!). I said yes, and he did! I was VERY thankful! Anyway, no matter what you decide to do, please be safe! I personally don't care what anyone thinks, as I'd rather be safe than sorry! Now, obviously, I'm thinking of ways to be safer in my home also...,DUH!! My best to you..., ;o)

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My husband has cerebellar ataxia Type 13 and he uses a walking stick when we go out. He actually gets complemented on it often, particularly when we go to Sci Fi conventions (it kind of looks like Gandalf's staff). It definitely helps him a lot, particularly when we are going long distances or over rough terrain. He doesn't like the idea of a cane either, but the walking stick is cool. Better to be safe and be able to do more than to limit your activities due to fear of falling. Hope that helps, and our best to you.