Help

Hi

Does anyone else have this problem and any solutions greatly accepted. I have SCA2 and am 55 years old and have been diagnosed about 7 years. My balance is rubbish and coordination the same but haven't resorted to a stick yet. I have had a few falls in the house but mainly because I wasn't concentrating on what I was doing, The thing that gets me down the most is the feeling I have when walking mostly mornings although anytime really. I feel my head is all woozy and feel sort of faint and as if I can't walk straight. My feet are a problem too the only way I can describe it is that my skin is tight on my feet and I also suffer with cold feet. Most of the time they are really uncomfortable. Any body else suffer the same please let me know I'm not the only one.

Louise

14 Replies

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  • Hi Louise😊 I'm fairly confident in saying most of us feel pretty much the same way. Mornings are always challenging for me, just getting myself upright and out of bed is a big step😉 I'd liken my head to a snow globe after it's been shaken😑 Speak to your GP, you may need your blood pressure checked if you feel faint🤔

    My feet can vary between being freezing for no apparent reason, or unbearably hot🙄 Either situation demands immediate action, particularly if it disturbs sleep🙄 I wouldn't say the skin on my feet feels tight, my legs are a different story😏

    Your GP may not be aware that there are Medications available to alleviate specific ataxia symptoms, although often it's trial and error.

    🙂xBeryl

  • Someone is in my exact situation at last I have found some answers seems everyone's talking from the same book anyone covered in bruises they haven't caused up lower legs??Mine look like a map of bruises it has improved a bit but not a lot I been on all the vitamins months mainly iron and B and folic acid my mouth full off ulcers and lips constantly dry??No matter how much I drink plus constant thirst??

  • Other people were scared and suggested I use a walker for balance. Use of walker increased my mobility. Keep looking in Charity warehouse for one. I resisted walker or stick for ages.

    Dizziness may be side effect of medication or ataxia. Your walker will overcome this.

    Tight foot skin not yet. HTH

  • Thanks for your reply

  • My foot on the left is completely shortened tendons since I got really ill,I have a bunion,I never went into hospital like that I went in with two pairs of Clarks shoes that where lace up but supportive and even completely unlaced I could not get them on I ditched them I have tried everything refuse to wear boots for disabled (I am 40 and quite trendy,plus I couldn't lace them up!Instead crocks or Birkenstock's they do them for winter I can get them on and keep them on.I wear padded ankle trainer socks as well,try the crocks my feet where in complete spasm and agony really painful in hospital they can give you baclofen even in liquid which I had it's a muscle relaxant but my muscles the opposite now except for the left foot they are hypotonic??Or floppy Everything is I look at a photo and I am slumped sideways or forwards .My Dad taps me on the shoulder at dinner then I sit up and drop Everything of the table!!Mainly cutlery drinks and napkins!!Lucky no carpet I ruined ours which was cream!!And the hospitals!!

  • Thanks for your reply

  • contact the occupational therapist- I contacted the one at my council and she came and advised me to have various rails in rooms and upstairs and they fitted them free and also advised me on the loos( handrails each side) when I got worse and was given a powered wheelchair on the NHS she also advised me on ramps at the front of the house and back so I could get in the garden for the first time for 3 years. I am a self funder so she gave me the names of people who do this work for the council and over a year ago I had my shower room changed into a wet room ( I could not get in the shower on my own any more) and I can sit in the garden now- the ramps he built give you a veranda at the back that you can sit on.He lives in Kent.I was very pleased with the work and it only took a day.all the best Sylviax

  • Thanks for your reply

  • My Mum got 0 advice she had it all done out of her inheritance from my Nana !Finally we get help I went a year without a bath going up to my Aunts house with my Dad to a sit down shower we have it now and it's trendy main problem I grab hold of heated towel rail when falling off loo!Its raised with grab rails But to me the nearest thing is better than the floor I have often fallen off the shower seat while reaching for shampoo!That my son has on the floor...We have a grab rail there has anyone made a cold cup of coffee !!Its not good...And nor is boiling the kettle scorching your hand on it thinking you have to fill it..,

  • Hi,

    the tight feeling you are having in the morning may be part of reduced proprioception (messages being sent from your foot to your brain). This is what contributes to falling as well. When you wakes up, before getting out of bed, try sitting with your legs over the bed and move your feet to make the shapes of the alphabet - this will help waken it up a bit but probably won't take the feeling away completely! Good luck!

  • Does anyone else get the pins and needles in random feet and hands plus complete numbness??

  • Yes keep getting numbness in my fingers

  • Yes mine is exactly the same I can't do anything without major concentration (which goes extremely quickly I feel over backwards on crutches but they are really helpful outside now I drop everything on floor even when out including crutches they lowered them and put white tape round them my son kept adjusting and walking round on them(No rugs anywhere no carpet it's all really nice slip resistant and cleanable laminate that looks like normal wood(The walls of my bedroom look like a chimps had a paint fight with a coffee cup(It wasn't me!!)It never is!!

  • I also have no thermostat it's on boiling or freezing and fluctuates wildly!!

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