Hurting and afraid

Is anyone afraid ofalling steps or unlevel surfaces. Do anyone have severe pain walking and body is always tense up tight as if you are afraid you may fall. What are people doing to help?

I fell yesterday about 8 times. This morning I ordered a power chair but it does not help that I have sick & on medication along with not sleeping. I figure there is less chance of falling from a chair. I am always open to other ideas.

Yes, I do fear falling down stairs. I only take the stairs when there’s a handrail. Uneven surfaces are impossible for me. Add walking on a grassy surface to that also. Padded carpeting, so common, makes me feel like I’m on a trampoline.
I have never had pain with this disease, but when I am cold, my whole body freezes up and I have to force my body to move.
I will not give in to this disease. I am careful not to turn my head to look at something…I will go down…but I slowly turn my whole body.

I have been told by people who’ve seen me fall that I go down in slow motion…doesn’t feel that way to me…has anyone else heard of this slow motion fall?

Hello Carlous!

I have had these same sensations since 2001. My muscles are contracted most all of time. Especially when I walk. Intention tremors is a term used to describe the tightening of muscles when you intend to proceed with a task; like stepping off a curb or climbing down stairs. One way to help this is strengthening your core muscles which comprise primarily of the abdomen, back and pectoral muscles. These muscles help you balance. Personally, I have taken up Tai Chi which is an ancient Asian art form. It not only deals with balance, but centering as well. One thing I have learned is that the body's energy moves in circles. Our joints for example, move in semi-circles (notice the round edges where the knee joints meet). The brain thinks linearly (a straight line), but the body operates most naturally in a more fluid, circular fashion. If you notice an Olympic sprinter when they run they are actually swaying from side to side. This brings me to swaying: when you walk, instead of going forward, trying swaying from side to side. As well, use your arms to help keep the whole body going in the same fluid motion. Again, looking at the Olympic runner, you will see he is using his arms as much as his legs. Fluid, circular motion is the trick. Hard to comprehend I know, but it has made a tremendous difference in the stability of my gait AND it requires less energy! Look into Tai Chi classes in your area. I took my first class last fall at the community college here in Saint Louis and it cost me only $93.00 for sixteen sessions. Remember: Sway you way to a more stable, comfortable and less frightening walk!

I am going to a physical therapist (that works with neuro patients not orthopedic). I was having trouble with uneven surfaces, walking down small hills (aisles) and they have shown me what to do and we work on it when I go to therapy in a safe environment. I have gone to a theater where there was the aisle that is angled. I was able to do it without hanging onto the chairs. They are showing me how to walk through snow, in the grass, down stairs. I have been going since January and I can't believe how much they have helped me and how much better I'm walking. Still have falls, but tripping less and when I have a fall they try to recreate what happened so next time I know what I should do.

I use a cain outside the house… also, I take Amantadine, Flexeril, Ibuprofen 800s X3 & Neuronton…

I'm not afraid of anything,anymore!! The strength and courage displayed from children with Friedreich's Ataxia is absolutely awe inspiring.I'm 62..So pain and falls will happen if I ignore the advice given to me from health pro's and of coarse,this forum..Hope you get good advice too, Carlous..

Best wishes..Ozzy..

,I now get a bit wobbly on a sloping pathway or surface. I don't know if your walking unaided or not, by your post, but I always use a walker, it doesnt matter where im going, I never leave home without it. I am so fatigued and have pain in my upper body, and have been feeling nauseous. I still do try to go out most days, as I love looking around the shops. I try to be positive, it helps. Use any aid that makes you feel safe, falling down could be disasterous. We are all in this together, good luck and stay upright, lol

I don’t have any pain when walking short distances but any longer my legs let me know! I do feel very tense when outside particularly if the ground is uneven or sloping - this might be a natural response to the fear of falling - and I use a walking stick outside. The main thing is the fatigue - I certainly can’t do all the things I used to!

I am always afraid of falling, I do fall -- try not to stop myself when I am going down I do not have pain, When I fall if my partner is around she extends helping hand. We keep a belt around to aid if needed. I always carry my cellphone in my pocket just in case I need if alone to call 911 for an assist.If my partner is going to be out of town she informs all the neighbors. I keep the front door unlocked and they check in on me.

Worked out with my next door neighbor a little scheme. They put a door bell in their house and I have a push thing that will set it off Their old and a bit feeble and I don't use it but it made them feel better that the scheme is there.

I try and calculate every movement while attempting to move about without using a wheelchair. Not able to get into the bathroom or bedroom using it but now and then I will fall in a nanosecond.

I try to not let myself get in a situation where I have to go down stairs alone. Fortunate in that the stairs are off the front porch so my partner walks behind me as I hold on to the banisters. If I had to go down by myself I would get out of my wheelchair and scoot on my butt.

Its always an adventure.

Oh boy! My thanks to this post and all those who replied. I thought I was the only one! If one foot is on a carpet and the other is off, then I feel unstable & fear falling. I have to move so either both feet are on or off the carpet.I can not walk on grass at all. The entrance to my church is on a slight slope. I walk it very slowly even with my walker as it feels like I'm climbing Mount Everist.

I don't have pain (Thank You Lord), I just feel like I'm going to fall all the time. Thank You all! I don't feel so alone anymore. Some times I thought that I was crazy. (well crazier than usual)

Blessed Easter to all! Thank YOU again!!

Since becoming a widow and faced with living alone I researched all the medical alert systems. I chose Great Call because it works on GPS and through the Verizon network ( the only dependable provider where I live). I have it on me at all times (they make a waterproof one now). It follows me no matter where I go in this country. I did have the occasion to use it when I fell. Pressed the button and someone was talking to me almost immediately. She stayed on the line with me until help arrived. I can’t say enough good things about this device. You can get help for any emergency…even a flat tire…or to call the police…hold the button down longer and they will find you! I don’t have any monetary gain from recommending this service. For me, it’s the most dependable and affordable. I think every Ataxian should be sure to have This device or something similar. Just my 2cents.



Mommaroo said:

Yes, I do fear falling down stairs. I only take the stairs when there's a handrail. Uneven surfaces are impossible for me. Add walking on a grassy surface to that also. Padded carpeting, so common, makes me feel like I'm on a trampoline.
I have never had pain with this disease, but when I am cold, my whole body freezes up and I have to force my body to move.
I will not give in to this disease. I am careful not to turn my head to look at something.....I will go down.....but I slowly turn my whole body.

I have been told by people who've seen me fall that I go down in slow motion....doesn't feel that way to me....has anyone else heard of this slow motion fall?
All the time...

We replaced all carpeting and throw rugs except bath sticky back rug. Wet or icy surfaces is a no go zone.

Last weekend I passed out and fell, which gave falling a whole new meaning.

One minute I was standing making breakfast, then I was on the floor surrounded
by paramedics. Luckily my husband was home, or heaven knows how long I would
have lain there.

Slopes, steps, uneven surfaces etc all create havoc if you have SCA. Virtually
unavoidable if you want to try and carry on a ‘normal’ existence, these hazards
are encountered everywhere.

I’m used to falls but this is the first time I wasn’t aware it had happened, it’s
scary. There’s a cut on the back of my head, it took the brunt of the fall, but
apart from that no bruising or pain, despite falling flat on a tiled floor.

Lying completely flat always made me dizzy, this last fall has made it much worse.

Try physical therapy if you haven't already.

I am going to a physical therapist (that works with neuro patients not orthopedic). I was having trouble with uneven surfaces, walking down small hills (aisles) and they have shown me what to do and we work on it when I go to therapy in a safe environment. I have gone to a theater where there was the aisle that is angled. I was able to do it without hanging onto the chairs. They are showing me how to walk through snow, in the grass, down stairs. I have been going since January and I can't believe how much they have helped me and how much better I'm walking. Still have falls, but tripping less and when I have a fall they try to recreate what happened so next time I know what I should do.


Snoozy said:

Oh boy! My thanks to this post and all those who replied. I thought I was the only one! If one foot is on a carpet and the other is off, then I feel unstable & fear falling. I have to move so either both feet are on or off the carpet.I can not walk on grass at all. The entrance to my church is on a slight slope. I walk it very slowly even with my walker as it feels like I'm climbing Mount Everist.

I don't have pain (Thank You Lord), I just feel like I'm going to fall all the time. Thank You all! I don't feel so alone anymore. Some times I thought that I was crazy. (well crazier than usual)

Blessed Easter to all! Thank YOU again!!

Yes. I don't think I'm as bad as some people here but I do fall over and I think I may get progressively worse. When it's dark, I can hardly put one foot in front of the other. I particularly have trouble with steps as I can't see the edge properly

Dear Carious Bobo, As a rule, I do not suffer from pain but, yes, I do have a fear of falling, as I have several times the past few years. I've hurt myself (back, hairline fractured my pelvis, cut open the back of my head, bruised knee's, etc.) a few times. I MUST have a railing to hold onto when going up or down stairs, and uneven ground surfaces are not my friend...,ha! I agree with others that strengthening your core is helpful for balance. I have very tight muscles/ joints. I think (?) this is a way to compensate for poor balance, as I tend to raise my shoulders also. I do exercises each day for stength and balance, as well as stretches. I also use rocker and wobble boards (I hold onto the ledge between my kitchen and family room, of course! Holding onto the back of a sturdy chair works too! Doing these things help me. ;o)

Have you gone to a Physical Therapist? I know that it may sound funny, but, learning how to fall and roll so you don't hurt yourself and it will give you more confidence too! I did that and it helps! :-) Good luck on your journey of finding what helps your ataxia. Everyone even with the same ataxia is a little different but we all share some issues too. :-)

Also, I use a quad-cane when I leave my home for more stability and I've never fallen while using it! ;o)