I can not stand on one foot with my eyes closed :(

[Bolt_Upright]

This is troubling?

[kevowpd]

There have been studies that suggest this is a reliable indicator of things going bad, yes. Not sure of their quality.

OTOH, probably a less reliable indicator than REMSDB (or whatever the damn acronym is) so maybe don't stress too much about it?

[MBAnderson]

Dave, I am beginning to think you have PD.

[SilentEchoes in reply to MBAnderson]

Or something else.

[kaypeeoh]

I can stand on one leg for over a minute with my eyes open. With closed eyes, not so good. It suggests with practice I'd get better. I don't know whether PD is a factor. Years ago I would practice standing on one leg while lifting weights. Whatever you practice, you get better at.

[House2]

do you fall consistently to the same side r-l?

[Fed1000 in reply to House2]

Yes.

[House2 in reply to Fed1000]

which side?

[Fed1000 in reply to House2]

The right side, the one hit by the PD. Thanks

[Bolt_Upright in reply to House2]

No, not the same direction every time. I actually have a really hard time standing on one foot with my eyes open. I know I am grasping at straws.

[Lizzy9]

I don’t have PD and can only manage a few seconds. Don’t read anything into it till you get plenty of facts!!

Gave a fabulous day!!

[Bolt_Upright in reply to Lizzy9]

Thank you Lizzy9!

[Lizzy9 in reply to Bolt_Upright]

You’re welcome.

[chartist]

Bolt,

Do you supplement B-12? A deficiency can cause balance issues.

We don't think about it much, but we use our eyes as part of our balancing system as the eyes give constant feedback to help maintain balance. Suddenly remove that feedback from the total balancing system, as you did, without an adjustment period for the body to learn to compensate and balance difficulties become much more likely.

Art

[Bolt_Upright in reply to chartist]

Thanks Art, I do take B12.

[CaseyInsights]

Very interesting my friend.

I can stand for one minute, eyes open. But I have quite a challenge with my eyes close. [ I am embarrassed to tell you how long I last, with eyes close.]

I will be 70 in June. Don't have PD.

And I think I like this exercise. Will do a bit each day

👍

[Bolt_Upright in reply to CaseyInsights]

Than you so much. My wife could not do 10 seconds either (but she has health issues too).

[Bolt_Upright]

I found I can do 10 seconds if I can hold my hands out for balance. And balance has never been my thing. But I can't deny that something feels off. Like if I lean forward to open a door I start falling towards the door. I guess the good news is I am no worse than I was in April when I got my RBD diagnosis. In fact, I am better. Thank you all for your honest and kind words.

[park_bear in reply to Bolt_Upright]

The direction of change is what counts the most. If you are improving all is well.

[Bolt_Upright in reply to park_bear]

Thank you Park Bear. Your words are much appreciated.

[glenandgerry]

I'm the same as Lizzy; I don't have PD and could only stand on one leg with my eyes closed for a couple of seconds even though I can easily stand on one leg with my eyes open for well over a minute. However I have been practising and, as kaypeeoh says, if you practise, you will get better & I'm pleased to say indeed I have!

Gerry

[Bolt_Upright in reply to glenandgerry]

Thank you Gerry!

[Jmwg45]

I can't stand on my right leg (stronger side) for more than 7 seconds with my eyes open. Ho hum.

[WinnieThePoo]

Tricky isn't it. I'm better on my left foot.My wife can't do it and she doesn't have PD.

Thank heavens they let you keep your eyes open skiing black runs

🛷

[Bolt_Upright in reply to WinnieThePoo]

Thank you Winnie!

[BootsOn]

Dave, I have a vision of you looking like you're doing ballet... Mind the neighbours don't see!

[Bolt_Upright in reply to BootsOn]

Good advice! Thanks!

[Cindy27]

So many things cause this according to Mayo Clinic, I wouldn’t worry about it:

mayoclinic.org/diseases-con...

[Bolt_Upright in reply to Cindy27]

Thank you Cindy!

[SilentEchoes]

If you want to test central ataxia, check the Romberg sign.

Stand with your back to a corner without touching the walls and put a kitchen chair in front of you to hold onto the chair back for safety (the chair seat should be facing away from you).

Next, stand with your feet slightly apart and without touching the chair, hold the pose for 1 minute (what happens?). Then close your eyes (what happens?).

If you sway with your eyes open you have central apnea, when you close your eyes it becomes much worse and are at risk for falls. Positive Romberg.

This is different from cerebellar ataxia. You test this with heel to toe walking (tandem walk test) like the police officers do to test for intoxication.

This will tell you the origin of your balance issues, it also rules out the vestibular system (room spinning when laying down, like when you're drunk off your ass) and dehydration, when you feel like you got off a rocking boat or the floors are slanted.

I have both cenral and cerebellar ataxia. No fun falling backwards into a toilet or not being able to break a fall. Be careful.

Please don't shoot the messenger, I think its important to be truthful about these things.

SE

[Bolt_Upright in reply to SilentEchoes]

I really appreciate your honesty SE. I will try this test. I can stand with my feet together and my arms crossed on my chest with my eyes closed. I don't seem to have a problem doing that. Standing toe to heel with eyes closed, not so good.

I should point out: You know that kid that was picked last for sports when you were a kid? That kid picked last WAS NOT ME. That kid was picked before me. I was, what I called, the WALK OVER TO YOUR TEAM kid

[laglag in reply to Bolt_Upright]

Can you rub your belly with one hand and the top of your head with the other, at the same time? 😃

[Bolt_Upright in reply to laglag]

You made me do it!

[SilentEchoes in reply to Bolt_Upright]

This is a general comment.

The takeaway for me is this - is what you're experiencing outside your norm? It sure was for me at 52 years old to lose my balance stepping into my shoes, needing to lean against something to get dressed, falls and near misses on stairs, closing my eyes to wash my hair and losing my balance, knocking over a glass because I miss judge it's location. I tried to set a plate on the counter and it fell on the floor - I knew I didn't drop it. That was the last straw for me.

There are a lot of things that can cause ataxia - when it's idiopathic the probability leans towards an environmental factor - ataxia is a hallmark of organophosphate poisoning.

My central ataxia is due to loss of proprioception and the way you test it is to take away visual input. That's the Romberg test. You need to stand with your hands at your side and RELAX for a minute. After you're relaxed - close your eyes, if you begin to sway the test is positive. Try the test again, safely - don't get hurt!

Our performance declines with age, so is it age related or something else? It sure as hell wasn't my age and definitely not my norm.

If it's "something else" then what is it? Some people don't want to know - I did and I fought to be told the truth.

My kids were 9 & 11 years old, my mom was late stage with PD, my future was in jeopardy and all I got was the run around and invalidation from the medical community. My experience isn't unique.

I live with ataxia. When people come on this forum asking for help, I don't think it's useful to be dismissive and invalidate a person's concerns - they already know something isn't right. Being the worried well isn't a comfortable space to occupy. I struggle more emotionally with the unknown than I do with the facts.

Does it matter if it's Parkinson's or ALS, SMA, MS, Cortical Basal Degeneration; or dementia, Alzheimer's, FTD, Huntington's, or Lewy Body? I believe it does, for some of us anyway, because it affects the choices we make.

I'm not elderly and I'm not ready to check out just yet. My kids are 18 & 20 now and moving into their adult lives. I wish it could be more carefree. All of this is fugley. I don't want them to worry, but they do. My promise is that I'll tell them when it's time to be concerned, and that's predicated on my knowing the facts.

When I fell over walking in the woods we laughed and my husband helped me stand up. When I slipped and shattered my ankle it was traumatic. Ataxia is a serious disability and if you have it you need to be proactive.

I'm sorry if I triggered anyone.

SE

[Bolt_Upright in reply to SilentEchoes]

Thank you so much SE. You are very wise. Yes, I know something is outside the norm. When I am walking and turning sometimes I cut the corner sharper as I am falling towards the turn. Nobody would notice this, but I do. And yes, I have bumped into the shower wall when washing my hair. Just little things like that have been going on for years. Fugley is right.

I was able to stand with my arms by my side and my eyes closed without swaying (I don't think I was swaying). I hate this.

Good luck SE. May God bless you and make you well.

[SilentEchoes in reply to Bolt_Upright]

*I hate this too. I'm on this forum because I believe that WE are the ones who will solve this puzzle and forge a path for others to follow.

May God bless us all - no exceptions 💛

SE

[House2 in reply to SilentEchoes]

Look into a device (recently FDA approved) called a "PoNS Unit". youtu.be/Df_qg3gTqBU(Not working as expected?)

[SilentEchoes in reply to House2]

Thank you for sharing the link. These therapies should be standard care. I was blessed to find a PT who works with autistic kids and a few unicorn adults. I had the neurostimulater and red light hat therapy. My symptoms actually got worse. No idea why. She also tried the sauna bed, but I'm very heat intolerant.

What helps me a lot is the vibration plate machine. It bypasses the nervous system to exercise the muscles and stimulates lymphatic drainage. I believe it makes bones stronger too. I bought a NIR lamp to target areas so I don't get overheated.

I also had a different PT who worked on fascia, it's part of the nervous system - who knew?! She helped me a lot with my breathing and calming down my nervous system.

We moved and the drive is too much. On the hunt for massage therapy and chiropractic care, the rest can be done from home 😊

SE

[Bolt_Upright in reply to SilentEchoes]

I just saw a vibration plate machine the other day (my browser must suspect I have a problem) and was like... what the heck?

So it drains the lymphatic system?

What kind did you get? I found this cheap one on Amazon: LifePro Waver Vibration Plate Exercise Machine amazon.com/LifePro-Vibratio...

[SilentEchoes in reply to Bolt_Upright]

You should get one with handles, for me it would be like trying to run on a treadmill without holding on! I have a Power Plate, found it on Craigslist. It helps with a lot of health conditions, like osteoporosis and heart failure 🙂 Too bad they don't use it in traditional PT.

[bibsie]

My husband has PD. He has difficulty standing on one leg even with his eyes open.

I am extremely healthy, go the gym regularly, and take beginning ballet classes. Almost everyone I know, regardless of age of health, has difficulty with this challenge with eyes closed. Bottom line: don't worry about it.

[Bolt_Upright in reply to bibsie]

Thank you so much bibsie!

[Bundoran]

Eyes - closed single-leg standing is a very tough test. I can't do it and I don't have any balance issues yet. But I can put on my socks standing on one leg and this impressed my neurologist.

[Bolt_Upright in reply to Bundoran]

Thank you Bundoran! I will try this next time I change socks!

[Gcf51]

Maybe you should get a DaTscan

[Bolt_Upright in reply to Gcf51]

Thank you but I don't want to know too much.