Strange Feeling

[claire01]

Sorry in advance as I am not very good describing the feeling I have so ere goes...My legs are very wobbly and weak,my legs are not wanting to do what I want them to do,not fallen but have to lean on walls etc.

Has anyone else e

experienced this 😥

[Capricorn9157]

Hi Claire.

Yep, I have the same problem. I have to stand still for several moments after standing from a chair to get my balance, cant turn quickly, have to do it in stages, cant walk properly...my gait is like a baby wearing a nappy learning to walk I have to hold onto things and use crutches when I can get out and about.

My legs are getting weaker, but not sure if its my condition or lack of use

You will get used to it but I know how you must be feeling at the moment. Just take things easy, give up the marathons :O, and you will learn your own limitations.

The worse thing for me is if I catch a foot, say obn the edge of a rug or tap a chair leg...my leg does what it wants and I have no control on how to react so I stumble (honestly, I do take water with it... ). I have had a few falls but, luckily, so far no serious injury.

Keep your chin up and keep smiling.

GOOD LUCK

Steve

[claire01 in reply to Capricorn9157]

had the condition 5yrs so I am aware or the wibble wobbles just seems more severe today quite scarey 😣

[Capricorn9157 in reply to claire01]

Yep, know what you mean. I have good days and bad days. Think it depends on what I did the previous day or how tired I am (tired all the time though..!!!!! :O).

I do things when I can and at my own speed, rest when I have to even if in the middle of something. Dont overdo things.

[claire01 in reply to Capricorn9157]

yeah vèry stubborn and push myself all the time...think I am paying for it 😏Thanks for the reply 🤗

[sunvox]

I apologize in advance as I am fully aware that my posts are patronizing, but I am simply frustrated when I see people who seem able to try harder to fight their illness, but don't do so, and from reading your posts online it sounds to me as if you still have enough coordination that you could undertake a serious exercise routine. There is ample evidence that it might push your symptoms back 2 years or more. There are several studies that offer insight into the value of coordinative training specifically for ataxia, and then there is a study done in patients with Parkinson's showing that running on a treadmill 3 times a week for 30 minutes at a pace that raises your heart rate to 80% of max is enough to stop progression. There is also a study done on patients with ataxia that were supported while exercising on a treadmill and they saw benefit as well. This all is in agreement with animal research that showed exercise actually reduced toxic ataxic proteins in the brain. Importantly I am certain that if you use an inclined treadmill you can achieve 80% heart rate while walking and holding on to the side rails assuming your doctor says its ok to try.

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There is a theory out there that neurological disorders like some ataxias MAY be helped by a multi-pronged approach. Yes it is true as part of my alternative therapy I take supplements that are unproven, but that is not what is important. What is important are these 3 facts: 1) I have SCA1 . . . let me say that again . . . I have SCA1 . . . and 2) one does not "cure" SCA1 nor is there any known way to stop progression and 3) yet here I am with a CAG count of 42 which for SCA1 means I should have bad symptoms by now, but I don't. (CAG counts vary in what they mean for severity depending on the type of ataxia). Maybe, just maybe I'm doing something worth trying, and maybe just maybe it can help, and it all starts by being a healthy weight, eating healthy foods, and exercising however you can. Then once you're fit, and ONLY once your fit, why not consider some of the other "prongs of attack" that I am trying by talking to your doctor about my list of supplements. I will tell you that 2 doctors in the US that treat SCA1 are now reviewing my total alternative therapy routine with their patients and deciding how to incorporate some or even all of what I am doing.

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Intensive coordinative training improves motor performance in degenerative cerebellar.

ncbi.nlm.nih.gov/pubmed/198...

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Long-term effects of coordinative training in degenerative cerebellar disease.

ncbi.nlm.nih.gov/pubmed/207...

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Effect of High-Intensity Treadmill Exercise

jamanetwork.com/journals/ja...

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Partial Body Weight-Supported Treadmill Training

ncbi.nlm.nih.gov/pmc/articl...

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Exercise and Genetic Rescue of SCA1 via the Transcriptional Repressor Capicua

europepmc.org/articles/PMC3...

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Running wheel exercise reduces α-synuclein aggregation

journals.plos.org/plosone/a...

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and here is a link to my primary post on HU detailing my alternative therapy. It is NOT about just the supplements it is also about the exercise and healthy diet and generally trying to be as fit as you can:

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healthunlocked.com/ataxia-u...

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It is my belief that if you can exercise and you have a genetically inherited polyQ type ataxia then you can take actions to slow the progression.

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Also, the elephant in the room that is not being discussed is the fact that we have the ability in this generation to stop this disease forever. Genetic testing affords us the ability to choose whether or not to have children both in knowing that we hold the gene for the disease and in knowing if our potential offspring carry the gene. Little if any discussion is happening on this account. It is a tragedy of epic proportions because we can halt this disease forever, but there is no support to do so.

[claire01 in reply to sunvox]

sorry but yes you are patronizing everyone has got there own threshold and I do do exercise weekly (2/3times per week) and eat healthý so please dont pressume you have all the answers regarding the progression of ataxia.

[Mariweena in reply to claire01]

Indeed you are extremely patronizing! Everyone is different and for you to chide those of us who don’t subscribe to your “treatment plan”is absurd!

You know absolutely nothing about the people on this page other than the fact they have ataxia so it’s highly presumptuous to speak with the people in this room in such a manner!! We come on here for support and understanding so if you cannot “get with the program”, as it were, then maybe you should be quiet.

[simon111 in reply to sunvox]

Good for you Joe

I must say I greatly admire you and your constant quest for answers.My 15 year old son has friedrichs ataxia and I am doing everything thing I can to stop his progression I research constantly,though unfortunately I have not got your level of intelligence.

Simon exercise s every day ,on exercise bike ,swimming 3 times a week..It's very hard for a young boy to face these difficulties,he has scoliosis and cardiomyopathy as well. He takes COQ10 1800mg a day definitely helps his energy Thiamin 1500 mg a day and various other vitamins in his constant battle to stay mobile

Mary

[ddmagee1 in reply to simon111]

I admire your perseverance and will to do everything you can to help your son! You are a special Mom, Mary! Ataxia, of any kind, is not easy to live with, but I have found that range of motion exercises, are helpful for me, along with stretching and simple balance exercises. Wishing you and Simon the very best!

[simon111 in reply to ddmagee1]

Thank you ddmagee1

[kathie29 in reply to sunvox]

no stranger to exercise as I owned a gym, however it does not help my ataxia.

[jeromekern in reply to sunvox]

I have Idiopathic Sensory Ataxia for the last 10 years, but was taken off the treadmill by a Neuro Physio who said the ataxia in the brain did not like the fact that I was on the treadmill and to do walking in the gym instead which is good because the floor is level and covered in carpet tiles which I can manage.

[BlanketTime1]

ick, I hate that. i'm still learning about ataxia three years in. for the past couple of years I've had about one week where I could basically walk before the drunken lurch set in again. this year for some reason it's been two months! on the other hand, my torso now wobbles like mad when I stand. I told my mum i'm like ray charles minus the beautiful music, lol.

but I remember the leg issues as well. I know lack of use made mine worse. I wrote on here (as sam99a) about my first exercise session when I cried b/c I couldn't do anything, but i'd been dragging my feet across the floor for months b/c it was too exhausting to walk. and I have avn of the hips, so the falls were dangerous! i'm not sure how much of my two month walking period is due to the exercise. even though i'm walking better I still have to be careful when I turn; that's usually when I fall. I do it very slowly.

as far as personal limits, we all know our own; we are the only ones who do. keep your head up.

[123geoff]

I'm sure by now you should have some kind of support equipment, safety in your situations.

[ddmagee1]

Yes Claire01, I have similar problems. Some days my balance is better than others. On bad days, I can get up from a chair, and lose my balance right away, and have to hang on to something to steady my wobbly walking, because I am just so unsteady. Please don't ask me to walk in a straight line, because I've never been able to do that! It's all over if I catch my foot on something, and start to fall, because once I start to fall, if there's nothing to grab onto, I can't stop my fall. It's all very disconcerting at times. I have found that aquatic and mild exercise does help, somewhat.

[swtb]

Furniture crawl. Been doing this for a while. But i refuse to give up walking my dog, cane on one side, dog on other. Current goal 18 blocks, nx 20. Niagen has really helped my energy level, as has Theracurmin, as suggested by sunvox on this blog. So grateful for sunvox' information.

[hsilverman1]

Dear Claire,

I have these feelings all the time. It is part of Ataxia symptoms. Some people have them sporadically, others more often.

Always,

Howard S

[february]

Hi Claire01, I've had ataxia for over 20 years now and just found out in 2017 (through genetic exome testing) that my ataxia is due to Niemann Pick C1 disease. Up until then the cause was unknown and called Sporadic Idiopathic Cerebellar Ataxia. My ataxia has progressed over the years and yes, I have the exact same problem as you! I go to physical therapy twice a week, exercise (safely) at home for strength and balance and eat as healthy as possible, which helps to some degree. You are definitely not alone in your journey! My best to you..., ;o)

[Jacqui-A]

Hi Claire, yes I stumble all the time, I have two walking sticks but my coordination isn't good so I have difficulty with them, I feel more confident with my walker. Jacqui

[claire01 in reply to Jacqui-A]

I am the same got a stick but like you say my coordination is poor so the walkers best for me too x

[Liltex in reply to Jacqui-A]

When I fell at work using a cane-I got a little 3-wheel walker. It’s been a life saver. Have to be careful cuz I’m now losing my balance backwards now :0

[Jacqui-A in reply to Liltex]

Hi liltex, do I have the lack of backward balance to look forward to then.

[stedman]

Hello Claire01,

Yep! I am in the same club. Coming in from the garden last night after a fireworks event with the family I actually fell not badly but the first time. I have been improving through the years, so last night was a surprise, I use a stick for walking usually but after a good nights sleep and a good breakfast I walk unaided and move fairly freely during the morning. As the afternoon passes, I need a stick and my steps become shorter, I cannot now ride a bike although I can still drive for short distances. My hearing, sight, and voice deteriorate as the day progresses. I was told in the beginning that nothing could be done, Ataxia is a degenerative ailment and can only be delayed and my team has been doing a first class job on me and we are managing the condition together along with my family and posts like yours.

My ambition is to welcome 2040's !

[Jacqui-A in reply to stedman]

Hello Stedman, how have your team managed to delay things? I've only had physio up to now. I have two sticks but am better with one, I also have a mobility scooter for walking the dogs. I feel so embarrassed as I look drunk all the time

. It seems like you.havea very supportive family. Maridale

[stedman in reply to Jacqui-A]

Hello Maridale,

I use the Ski - power walking stick with a good grippy ferule/stopper on the bottom, the shorter or adjustable sticks cause my hand to wobble making me feel insecure. A matter of choice! I will attest that exercise is very good for leg and back muscles and should be practiced daily. I try to do 4 - 6 hrs work in my Workshop and garden, If I don't succeed I try again tomorrow.

On shopping days I try to stand tall and take longer steps as I live on a hill and have difficulty walking down as well as up, shopping is on the level

Listen to your body. stay positive. and keep on moving. ;-))

[Jacqui-A in reply to stedman]

Hello Stedman,

Will have a look at the stick you use as the ones the physio provide are very difficult to get on with. You have a very positive outlook, good on you! Maridale

[Mariweena]

How could it as ataxia originates in the brain and is not a disease of the legs. Don’t ever let anyone make you feel bad because you’re not getting enough exercise! Jeez, I’m proud of myself if I can get thru just one day without: falling, running into furniture/walls/air 🙄, breaking or losing something, forgetting why I’m in, well, anywhere!

With this disease we have to be happy with the “little things” that work out each day versus the 243 that don’t 😬

Peace out ✌️

[Guyb]

Yes I’m the same leaning on things