I'm sure some of you have had the same dilemma that I'm facing.
My balance has got worse over the last year even though everything else is about the same as was.
Therefore even in the house I use a stick virtually all the time, if not I'm furniture walking. I'm much more dangerous than before.
Like most Ataxia sufferers I walk with a gait which has also become more pronounced.
During the last 6 months I've been suffering from various back pains. Latest one is a pain above my hip on the side without the stick aide. It's been there for about 3 weeks now and really hurts when I walk.
I think I need to stay more upright when walking. So I was thinking about walking with two sticks I think they will need loops that I can slip my hands through too otherwise I'll never have any hands free to do anything. Have a feeling that I may get kind of tangled up in the sticks though!
I don't walk outside very much, except in the garden as I have a power assisted chair to go out with.
Does anyone have any ideas or know the pros and cons of my two sticks idea.
Thanks.
I'm feeling very fed up with this blinkin illness
Love
Alison xx
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I too furniture walk at home but I feel I need to go out as I live alone and wouldn't see a person from one day to the next. I have a rollator with a seat, so when I go for my daily walk I can always stop for a rest wherever I am
Alison.... may I suggest two sticks of the sort that ramblers use, they look like Ski poles. Will keep you up, and on an even keel..... just a thought.
I’m having the exact same issues. I fell getting the dog water. 🙄 I just went on full disability after Thanksgiving 2019. I was thinking what the heck am I doing different? Am I getting worse? So fast? I realized I haven’t been using my medical back brace. (I know, duh). Wearing it everyday now. Oh I’ve been using a cane for years off and on mostly due to injuries. I’m using it for balance as well these days. Good luck. All the best!
I use the rambler sticks, I use 2 of these poles when I haven’t got a human stick and am walking on my own. But beware the airport security don’t like them and see them as potential weapons ☹️😘
I think posture is important and at 77 that’s one thing that seems to have helped thanks to neurophysiotherapist advice. Two sticks certainly or canes or poles. Exercise too of course 🙈
I agree, regular strength and inner core/ balance exercise to keep you strong (I’m 71 and live alone) and flexible. I go to Pilates and also chair exercise every week but this is getting increasingly difficult and I can see me giving up! A group is better for confidence and motivation. I find it hard to exercise on my own but getting to classes is difficult.
Yes I’ve just started a group of tai chi seated but everything is a real effort. I can only manage because my husband helps me. My favourite exercise machine At home is a vibroplate
My neuro physio explained why I look at my feet. Apparently it is because my cerebellum does not communicate with my feet that’s all I need to know when they touch the ground
Now got a Flexyfoot walking stick (oval handle) and their flexible rubber end, from Amazon, and a Rollator from my NHS Physio, so I’ll see how I go! They were recommended by a friend.
Patsy, my friend lives between Colchester and Sudbury so I often used to go to Colchester from Liverpool St to meet her. Not sure if I’ll be able to do the journey this year (she comes to London now) but if I do, we should meet up and compare notes!
Posts like this are so helpful for me to gain insight into what Beth can't tell me. Her balance has got really awful recently, to the point that I have got completely paranoid about her going up and down stairs. I can't advise on the two sticks tho it does seem that two sticks would be naturally more balanced posturally than one, so does seem to make sense to me and may reduce your pain. Beth is so reliant on her walker now for inside. We have a manual wheelchair for outside, I can't push it uphill. How do you get a power assisted one? The physio system seems to be that you get the cheapest option until she falls once too often then she gets the next cheapest option. It took 4 walkers before she got a half decent one! Went to West End on Saturday for first time in a while, and after years of loving the wee shops and cafes I realised that they are not wheelchair friendly. Life is suddenly taking on a very different guise, but I'm determined we will be as solution focussed, as you seem to be x
Firstly I live in France so the system is rather different here.
I did have a manual wheelchair before. But my husband has serious back problems in three places in his back. So he could no longer push me - he is also registered disabled. But he can work. It's because of his back problem that they got me an electric assisted wheelchair. Which I much prefer - it means nobody is controlling me when we're out.
Lots of places are not really wheelchair friendly. In France now, many shops and cafes in town centres have a doorbell at the doorway so that the staff can come out and place a ramp. However the UK is well ahead with dropped curbs etc.
I forgot you were in France, maybe we need to move 🤣. Thanks for taking time to reply, the thought of Beth/ us all being increasingly restricted in where we can go is a thought but I guess we just need to get imaginative!
I shouldn't move with Brexit going on!!!! I've finally just got my French nationality after about 2 years of paperwork and interviews - I have been worried as I use the health system so much and live on benefits. I feel very relieved now. Phew
Despite all efforts to fight ataxia, once it reaches a stage of cerebellum degradation it can’t really be reversed. Therefore wobbliness and other symptoms get more pronounced. For several years I have been using two walking poles to train myself into widening my gait and lengthening my stride. This also stops potential lopsided pains.
I joined a local gym a year ago and go 3 times a week, specifically to work on my legs and keep my muscles strong. In older age our thighs are particularly prone to becoming weak. (I’m now 70). Despite all my efforts, including daily yoga, I have to accept that ataxia is part of my life. Some days I feel this and find a quiet place where I can feel sorry for myself and even plan how I could end it all if it becomes too much.
Mostly though I’m kept going by being busy and knowing that I’m in charge of my life. I have a scooter for getting me safely to and from the gym, where apart from strength work I also have a 20 minute fast walk on the treadmill.
I have got two new hobbies, having received for my birthday in November a scroll saw and a pen for drawing on my iPad. I made an oak spatula yesterday and then used it to cook tea! Using the saw and other power tools. Joy in life is all about small wins, like this xmas I made a card for my wife, using my tablet pen. She made 70 cards, it’s one of her hobbies!
I got the 2 sticks very cheaply from go outdoors, but an internet search is always a good place to start. We live in a small bungalow so I’m never more than one step from a handhold of some sort. Outside, or other houses requires more thought and it’s the cognitive load we really need to work on and use more. Our brains are plastic and adaptable, so as one part is leaving other parts can step up to share the load. It just takes practice and determination and sometimes pushing through.
With love to all Ataxians, it can bring us low or make us stronger.
I found walking with a stick gave me backache, so to get walking and to keep my balance I use a 3-wheeled rollator which folds flat for storing in a restaurant or church. This has a bag so I don't need to carry things as I walk.
I use walking poles to help with my balance. I have tried a cane but it seems that I can’t consistently place it accurately. With walking poles I seem be able to get more of a rhythm going...slow rhythm! But I sometimes place them too wide and have the capability of tripping a person walking close to me. I don’t use them in the house as I use furniture and the walls. One thing that I found helpful is to remove the original tips on the bottom and replace with “feet-like” tips. It gives me a smoother stride. If I need to carry something I use a cross body purse or backpack. I have had no problems at airports because they can see I need them. When I get on a plane, the flight attendant places them in the overhead compartment. Good luck!
Thanks, my husband has walking poles, but I think the tips would be quite damaging in the house. Where did you get the other tips for the poles please xx
Thanks for all your advice, it's really appreciated. I do exercise regularly with a physiotherapist. I do about 3 hours exercise per week and the physiotherapist helps to decontract my muscles with passif stretches (he does all the work lol) and massage.
I also spoke to him about using two sticks this morning - he advised me to use two sticks whenever I'm tired or very leaning or wobbily. He agrees that my wobbiliness is definitely worse. Of course as a physiotherapist he says that by strengthening my muscles it would make me less wobbily. But there's only so much I can do before I am exhausted!!! Which he knows. The illness is progressing basically - I'm trying not to think about it as it really gets me down otherwise.
I couldn’t figure out how to give you the direct link🤷🏼♀️, but if you get on Amazon, type in hiking pole replacement tips. There are several but you’ll recognize the ones that look like little feet! My therapist also wants me to strengthen my legs and ankles. I will try anything to walk normal again!
My husband was eventually diagnosed with CA last year. He has for years used telescopic Leki poles with rubber ferrules. The tips can be replaced as needed and purchased on line and in outdoor gear shops. (Unbranded are fine and cheaper.) On unsurfaced paths he removes the ferrules. Having tried both he finds poles with curved ‘walking stick’ type handles rather than ‘ski pole’ grips more stabilising. He sets the height quite low - with top of the handle about wrist level. He prefers two sticks but because of a shoulder issue often just uses one. We have had no problems at any airports UK, Europe, Canada and are often ushered through the fast channel.
Can I just make a small suggestion, it maybe helpful to try 2 crutches or poles before buying. Co-ordinating 2 crutches can be very difficult. I stay in Scotland and my physiotherapist managed to get me an elbow height rollator which I lean my arms on as I push it. I had used crutches for many years due to another problem but after a collapse I was fulling every time I tried to use them.
My physio has suggested two sticks as well. I currently just about manage with one though it presumably wouldn’t hold me if I fell. The benefit mainly seems to be to ‘prove’ to others that I am disabled!
The main benefit of two aides to walking is if they are strong enough to hold you when your balance goes. Walking poles are lightweight and thin, so can really only help with confidence? The handles are also vertical. Look for heavier walking sticks with flexi rubber ends and good horizontal handles to fit each hand.
The downside is that it is something else to hold/accommodate! Ok for walking but not keys/shopping/buses etc!
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