Cerebellar Stroke - experience/treatment/recovery

I suffered a Cerebellar Stroke in Dec 2015 in my 40s and am interested in connecting with other cerebellar stroke survivors to share our experiences, testing/therapy options, struggles on the path to recovery.

@wendyruhl

I am having trouble finding a good doctor that understands my loss of mental capacities. Is there a particular search or way to find a good neurologist in my area that understands about a cerebellar stroke. It's pathetic but I feel like most neurologists barely know anything about them … do I just need to call around, or what??? cause I am sure their staff doesn't get it and will just say 'yes'. My doctor since I had the stroke doesn't even understand why I am still having issues…physically I am getting better and only suffer when overstimulated – but he doesn't even understand that… and he thinks I should be fine mentally and that it doesn't make sense…really, you idiot – sorry, but he is worthless.

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I totally sympathize with you. I believe outside of motor control issues, most Doctors have very little knowledge of the impacts Cerebellar strokes have. I finally went to Johns Hopkins for a "Neuropsychological Evaluation". It was a standardized comprehensive battery of tests checking memory, logic, et al. Besides testing me, they also interviewed my husband. At the beginning they stressed that they would not be able to tell me what I lost, but rather could ascertain my neurologic health compared to my peers.

They identified a number of areas, primarily they recommended a sleep study, and treatment for depression. The sleep study was negative, but the treatment for depression has made a huge difference in the quality of my life.

The other fantastic thing coming out of this is I now have a solid and comprehensive benchmark. This testing is very standardized so in the future I can be tested against my own benchmarks. That is comforting to know.

I don't know where you live but you or your Doctor should be able to find a facility that can perform the testing on you. Not any facility can do this since it requires specific training on how to give the tests.

I hope this helps.

Liked by Wendy

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@bille

I totally sympathize with you. I believe outside of motor control issues, most Doctors have very little knowledge of the impacts Cerebellar strokes have. I finally went to Johns Hopkins for a "Neuropsychological Evaluation". It was a standardized comprehensive battery of tests checking memory, logic, et al. Besides testing me, they also interviewed my husband. At the beginning they stressed that they would not be able to tell me what I lost, but rather could ascertain my neurologic health compared to my peers.

They identified a number of areas, primarily they recommended a sleep study, and treatment for depression. The sleep study was negative, but the treatment for depression has made a huge difference in the quality of my life.

The other fantastic thing coming out of this is I now have a solid and comprehensive benchmark. This testing is very standardized so in the future I can be tested against my own benchmarks. That is comforting to know.

I don't know where you live but you or your Doctor should be able to find a facility that can perform the testing on you. Not any facility can do this since it requires specific training on how to give the tests.

I hope this helps.

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Thanks… and yes, I went through the Neuropsych eval. But I do not know the outcome yet. I am in NW Houston area. I might have ruined the test results they said because I couldn't complete in one day. I was fine when I entered the building in the morning and with the first round of testing I could hardly stand up and move…my balance was so off. I only lasted till about 2pm and I was so overwhelmed I just couldn't stay awake/finish. My neuro actually thinks it might all be due to lack of oxygen…I already have a cpap machine, but he wants me to do yet another sleep test. Mind you, my first sleep test was already done post-stroke.
Thanks so much for understanding…we'll see what they say.

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I understand your frustration, I have been "passed around like a Hot Potato" since I had what I was told was a Stroke in 2012. I lost the use of my Right side. (I have been a paralegal for over 40 years (real estate/probate law), I can no longer type, fine motor skill loss, cannot walk without cane, impaired Speech/Hearing.) My Primary Care Doctor says I have several things wrong with me (but he doesn't tell me what they are???) He just sends me to more and more doctors. My Employer removed my Existing Work Accommodations so I could no longer do my job (right before my 65th birthday) so now. I am also dealing with having to live on a 1/3 of my prior income and dealing with being passed around like a hot potato. My daughter's Primary Care tells her to "Go to the Emergency Room" when she has a problem, then the Emergency Room Doctor says "Go see your Primary Care." I think this is a bad joke! But doctors are making lots of money. Patients have very little recourse from my observations! Doctors have financial interest in Insurance Companies – that is severe problem for patient receiving quality care.

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@ajweb93

I am 44. My blood pressure and cholesterol have always been good. Honestly very healthy. I had a cerebellar stroke August 30, 2019. My neck had been extremely sore and tight the week before. That day I didn't feel exactly normal, but not anything too out of the normal. Things didn't taste the same as the normally did. I walked outside with my husband and all of a sudden, I had extreme vertigo. Luckily he was near me and slowed my fall when I collapsed to the ground. I couldn't walk, he helped me in. I was so dizzy which then lead to constant vomiting and I sweat was rolling off of me like crazy. I finally said I needed to go to the ER the following afternoon. The swelling was so extreme the hospital staff was amazed that I wasn't in a coma. They think that the clot reached my brain by a PFO. I go to the cardiologist tomorrow to see if that needs correcting. I'm very nervous to have it closed and nervous not to. I'm so blessed in the fact that I don't have any physical problems that are noticeable to the public. But I have odd side effects. Some vertigo, very tired. Shopping makes me feel crazy weird. And it's hard to deal with people expecting me to be back 100% because I look normal. My anxiety is over the top. Now I have panic attacks and honestly don't want to leave the house. Have you experienced these same issues?

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Hello, it’s been a while since I visited this site and have just noticed your entry. I had the same symptoms as you experienced at the time of the stroke and reached one year after my stroke on Halloween. I still experience severe tiredness, occasionally feel a little off balance and just feel a “ bit off “ on occasions which often last a week or so. I consider myself so lucky to have survived without any outward symptoms and yes, I get a little annoyed when people expect my to do things as if nothing has happened. Supermarkets remain difficult for me to visit, I get what I need and get out. Driving, I’m fine and confident I’m safe. The main reason I got in touch was the PFO. I had the same, a PFO and, in my case a ASD and had them closed under four months ago. Surgeon bagged them both with the same amplatzer device. I feel no pain at all, I feel no difference inside but I am hugely pleased that I have had this route for blood clots reaching my brain firmly closed off. In my opinion, if you are suitable for this procedure, grab it with both hands would be my advice. It’s reassuring to know its there and working and the heart specialist has kept my on clopidogrel as well, as he says, it’s a belt and braces job. Stroke team at the local hospital have now discharged me from their care and Im grateful for a second chance given that it could have been a lot worse. I still marvel at this amazing PFO closure procedure. I sincerely hope all goes well for you whatever you decide.

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@ian7811

Hello, it’s been a while since I visited this site and have just noticed your entry. I had the same symptoms as you experienced at the time of the stroke and reached one year after my stroke on Halloween. I still experience severe tiredness, occasionally feel a little off balance and just feel a “ bit off “ on occasions which often last a week or so. I consider myself so lucky to have survived without any outward symptoms and yes, I get a little annoyed when people expect my to do things as if nothing has happened. Supermarkets remain difficult for me to visit, I get what I need and get out. Driving, I’m fine and confident I’m safe. The main reason I got in touch was the PFO. I had the same, a PFO and, in my case a ASD and had them closed under four months ago. Surgeon bagged them both with the same amplatzer device. I feel no pain at all, I feel no difference inside but I am hugely pleased that I have had this route for blood clots reaching my brain firmly closed off. In my opinion, if you are suitable for this procedure, grab it with both hands would be my advice. It’s reassuring to know its there and working and the heart specialist has kept my on clopidogrel as well, as he says, it’s a belt and braces job. Stroke team at the local hospital have now discharged me from their care and Im grateful for a second chance given that it could have been a lot worse. I still marvel at this amazing PFO closure procedure. I sincerely hope all goes well for you whatever you decide.

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Thank you for you’re reply. I talked to the cardiologist yesterday and he recommended that i have the pfo closure procedure. From everything I’ve heard, the recover process is simple. The grocery store is slowly getting better and I have more confidence now when driving. It’s safe for me to drive. I think I’m being overly cautious. Doctors also discovered that I have cervical spinal stenosis. They say it’s unrelated to the stroke, but my severe neck pain started the week I had the stroke and it’s still painful. Did you experience neck pain?

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@barbarajean100

Thank you from the bottom of my heart for sharing this. It is so "validating" to know that someone else experiences the similar symptoms. Your descriptions seems a whole lot like my experience. I was just reluctant to reach out because alot of persons have it so much worse than mine. I feel like I would be complaining because there are so many much worse off. My experience has been more in my "thinking" and "cognitive" than the outside obvious injury. I do have a little bit of trouble with my right three fingers on my right hand and my right arm, shoulder, hip and foot, but for the most part, I am ambulatory. I am not going to list everything but I would say that most I deal with balance in a car when riding, I drive to the right because I think my perception is off. I get overstimulated so easy even in menial tasks. If too many things are going on, like tv and telephone call and someone talking, I can't have good perception because my mind is too busy. That's when my speech suffers the most. I can be doing fine in the morning when I wake, and a phone call come in and I answer and immediately my speech will be dysartric. My neurologist says its called "flooding" and I just have no filter/buffer. Forget the grocery store. Too many people. I will stop at that because I feel like I am complaining again. I promise I'm not, it's just things I wonder if someone else deals with. I apologize.

I want to thank you for your positive words and encouragement. That means so much. I appreciate it. I would like to say that I am a very positive person and my "faith" has helped me in so many ways. AND the fact that I just try to "make light" of myself when I do something that seems a little crazy. I try to make fun of myself. The Word says "laughter" is good like a medicine so I focus on laughter. I love to laugh.

Many thanks.
Barbara

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@brightwings and to all others… yesterday I did it! I did the free grocery store pickup all by myself! I have a lot of trouble with crowds but this pickup at the grocery I did it successfully so now my husband doesn’t have to drive me to the grocery and go in with me! Praise God I did it!!

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@barbarajean100

@brightwings and to all others… yesterday I did it! I did the free grocery store pickup all by myself! I have a lot of trouble with crowds but this pickup at the grocery I did it successfully so now my husband doesn’t have to drive me to the grocery and go in with me! Praise God I did it!!

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Well done Girlfriend. I am so proud of you.

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I suffered a brain bleed stroke about four years ago and was diagnosed with CAA (cerebral amyloid Angiopathy) and it mainly affected my eyesight. My problem at this point is that in 2010, I was diagnosed with Afib but can't have any blood thinners due to CAA

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@ajweb93

Thank you for you’re reply. I talked to the cardiologist yesterday and he recommended that i have the pfo closure procedure. From everything I’ve heard, the recover process is simple. The grocery store is slowly getting better and I have more confidence now when driving. It’s safe for me to drive. I think I’m being overly cautious. Doctors also discovered that I have cervical spinal stenosis. They say it’s unrelated to the stroke, but my severe neck pain started the week I had the stroke and it’s still painful. Did you experience neck pain?

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Oh my gosh!!! I was diagnosed with cervical spinal stenosis 2 months after my cerebellar stroke August 209. My doctors say it is unrelated, but the week before my stroke, my neck hurt so bad I was almost in tears! My neck pain still is bad, but I can't believe the doctors can't see how it must be related!!!

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@brightwings

Well done Girlfriend. I am so proud of you.

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I know it’s kind of crazy to “report” what would seem insignificant to a lot of folks but to me it was like a hot air balloon ride! I felt now “free”! I praise God for services available like pickup for groceries! I left my review and explained it to them how important it is to people who are unable to do shopping! Baby steps!!

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@ajweb93

I am 44. My blood pressure and cholesterol have always been good. Honestly very healthy. I had a cerebellar stroke August 30, 2019. My neck had been extremely sore and tight the week before. That day I didn't feel exactly normal, but not anything too out of the normal. Things didn't taste the same as the normally did. I walked outside with my husband and all of a sudden, I had extreme vertigo. Luckily he was near me and slowed my fall when I collapsed to the ground. I couldn't walk, he helped me in. I was so dizzy which then lead to constant vomiting and I sweat was rolling off of me like crazy. I finally said I needed to go to the ER the following afternoon. The swelling was so extreme the hospital staff was amazed that I wasn't in a coma. They think that the clot reached my brain by a PFO. I go to the cardiologist tomorrow to see if that needs correcting. I'm very nervous to have it closed and nervous not to. I'm so blessed in the fact that I don't have any physical problems that are noticeable to the public. But I have odd side effects. Some vertigo, very tired. Shopping makes me feel crazy weird. And it's hard to deal with people expecting me to be back 100% because I look normal. My anxiety is over the top. Now I have panic attacks and honestly don't want to leave the house. Have you experienced these same issues?

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My stroke was August 26 of this year and I was hospitalized for 2 weeks. Everything you’re describing sounds familiar w/ the exception of cause. Mine came on with 2 first-ever seizures (one a 20 minute grand mal) and Vertebral Arterial Dissection. So, Neurologist said it was “spontaneous” … and no direct cause can actually be confirmed. I definitely have some cognitive impairment as well physical. I “appear” as a “normal” person but I feel different. I get flustered and confused when too much is coming at me. And I cry – I wasn’t much of a crier before, but happy tears too! It’s bizarre. I’m not as sharp as I used to be and I find the constant tinnitus-like buzzing irritating, but when it becomes loud I know it’s a sign to rest. So many other little issues which add up, like pins and needles and loss of blood flow (Reynauds). Still, I’m glad I can walk and talk and live a life. Not sure what kind of life as of yet, but life, at any rate.

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Hi all, happy to find this site.

Got cerebral stroke march-19 with three blodclots caused by a dissection in neck artery. It hit like lightning, Heavy vertigo and started to vomit in seconds. It felt like someone was pushing me really hard to the floor and couldnt move.
I am 39, In hospital they thought it was crystal sickness in the ear. I forgot everything, total blank, couldnt remember the names of my kids, the only thing i could remember was the name of my wife so I was holding on to that one! Did an MRI, was in hospital for two weeks, then rehab for two weeks before going home to my family. Felt like a million bucks at that time being home with my family. Started to work 50%. I july-19 i got a regression, got dizzy, nausea and thought it was another stroke and had multiple panic attacks for the first time in my life. Got to the hospital for a MRI. Was told that my artery was healed and no stroke. They called it post-stroke symptoms and that it was quite common. About two weeks later I was back on track, feeling good again. All felt good and started going to the gym, went to social events, dinners etc.

In november-19 during a lunch meeting I got very dizzy, couldnt stand up and a friend drove me home. Im eating thrombyl acetylsalicylic acid daily as anticoagulant so the risk for another stroke is at minimum (I guess). Anyone else eating anticoagulant, felt any sideeffects?

Got ok after a week but since then I have not recovered. I feel dizzy every day with ”small lightning attacks” i have brain cloud, i cant go to stores or any social events bc of brain flooding. It feels I have regressed 7-8 months. Im afraid this will never end. My dizziness is not rotational but sea dizzyness. Like im on a raft on a very slowly moving river. Its there when I go to bed, its there when I wake up, its there when I write this. Im starting to get depressed, its not getting better, its not getting worse, its just there all the time. One factor is that i live up north with almost no sunlight during winter, could that be a cause not feeling better?

Anyone else experienced this kind of big regression? will it ever get better?

I find it helpful walking in the forrest. Putting away the cellphone, meditate.

Im thinking about qigong or tai shi, anyone with experience?

My stroke affected my balance, sight, fine-motorics in my left hand. The sight i dont care about, the left hand is getting better playing piano so would recommend starting playing an instrument. For pushing and challange the brain fatigue and hand motorics i started building lego with my 7 yr old son. Thats was a smash hit i can tell you and great tool for rehab for me.

Other effects i noticed but was outside my direct stroke damage:
I get this warm rush through the body and then getting cold (apparently I now know the feeling of pregnancy 🙂 I kind of lost my sense of heat on my left hand (had some boiling water on it and didnt feel it much), but that sense has come back. I lost some vocabulary and have trouble bringing forward the word from the brain, ie tulip or lavendel but once I find the word it doesnt get lost again so thats fine. My math is not as good as it used to be but is improving really really slowly.

Maybe its obvious but i stay away from alcohol, last year I had a glas of wine at dinner sometimes but i believe that really counteract the rehab process so stopped all completely.
I started drinking Tea and turned it into a hobby, very relaxing so recommend that. Stopped with coffee and anything with caffeine since its not doing any good for my brain and my progress. Eating more fruits and vegetables and felt a big difference in healing process.

Sorry for the long writing and spelling.
I wish you all the best and a healthier future, all you guys are awesome!!

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I wanted to give an update on my recovery. My stroke occurred June 7, 2017. My recovery has been great. I still have slight dizzy spells if I move certain ways. The Neurologist said that was probably due to the restricted blood flow to the cerebellum and would not go away. It is very minor. Stairs still give me pause. I just make sure I pay attention when going up or down and use hand rails.

Last Friday evening I was feeling great. When I started to go up stairs as soon as I took the first step up it felt like I was standing still and the house moved around me. It was extremely weird and nothing like I have ever felt. Each step was the same. I had to hold on to the handrail with both hands and take it one step at a time to make it up. After I made it up I sat down and had a drink and it went away. The rest of the evening and the next day I was fine. However, as evening came we were going to dinner with friends. I stood up form the chair and it was back. Stairs were the same. I had to hold on with both hands and take them one at a time. It wasn't like the room was spinning. It was like being in an earthquake.

My husband took me to the emergency room and they admitted me. Frankly I was embarrassed to go there. The symptoms eased up while in the ER until they were gone. I felt it was probably just sinuses. They all told us we were absolutely correct in coming in to be checked. I was put on the telemetry unit and had a battery of tests, a cat scan, an Echo Cardiogram, EEG, BARP, two MRI's and and MR/A.

It was vertigo, probably caused by a crystal attaching to a hair in my inner ear. However, what I was on cloud nine about, was the scans were compared to my previous scans and nothing had changed. My heart was great and there had been no other issues with my cerebellar, or any other part of my brain.

All of the doctors, and medical staff assured us that it was the correct call to come to the ER when this occurred. They also said in the future should I have another event like this, I should go to the ER immediately to get it checked. As one pointed out, I have multiple sinuses but only one brain.

So anyway, that was the excitement last weekend. I just thought I would pass on my experiences.

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@incognito

Hi all, happy to find this site.

Got cerebral stroke march-19 with three blodclots caused by a dissection in neck artery. It hit like lightning, Heavy vertigo and started to vomit in seconds. It felt like someone was pushing me really hard to the floor and couldnt move.
I am 39, In hospital they thought it was crystal sickness in the ear. I forgot everything, total blank, couldnt remember the names of my kids, the only thing i could remember was the name of my wife so I was holding on to that one! Did an MRI, was in hospital for two weeks, then rehab for two weeks before going home to my family. Felt like a million bucks at that time being home with my family. Started to work 50%. I july-19 i got a regression, got dizzy, nausea and thought it was another stroke and had multiple panic attacks for the first time in my life. Got to the hospital for a MRI. Was told that my artery was healed and no stroke. They called it post-stroke symptoms and that it was quite common. About two weeks later I was back on track, feeling good again. All felt good and started going to the gym, went to social events, dinners etc.

In november-19 during a lunch meeting I got very dizzy, couldnt stand up and a friend drove me home. Im eating thrombyl acetylsalicylic acid daily as anticoagulant so the risk for another stroke is at minimum (I guess). Anyone else eating anticoagulant, felt any sideeffects?

Got ok after a week but since then I have not recovered. I feel dizzy every day with ”small lightning attacks” i have brain cloud, i cant go to stores or any social events bc of brain flooding. It feels I have regressed 7-8 months. Im afraid this will never end. My dizziness is not rotational but sea dizzyness. Like im on a raft on a very slowly moving river. Its there when I go to bed, its there when I wake up, its there when I write this. Im starting to get depressed, its not getting better, its not getting worse, its just there all the time. One factor is that i live up north with almost no sunlight during winter, could that be a cause not feeling better?

Anyone else experienced this kind of big regression? will it ever get better?

I find it helpful walking in the forrest. Putting away the cellphone, meditate.

Im thinking about qigong or tai shi, anyone with experience?

My stroke affected my balance, sight, fine-motorics in my left hand. The sight i dont care about, the left hand is getting better playing piano so would recommend starting playing an instrument. For pushing and challange the brain fatigue and hand motorics i started building lego with my 7 yr old son. Thats was a smash hit i can tell you and great tool for rehab for me.

Other effects i noticed but was outside my direct stroke damage:
I get this warm rush through the body and then getting cold (apparently I now know the feeling of pregnancy 🙂 I kind of lost my sense of heat on my left hand (had some boiling water on it and didnt feel it much), but that sense has come back. I lost some vocabulary and have trouble bringing forward the word from the brain, ie tulip or lavendel but once I find the word it doesnt get lost again so thats fine. My math is not as good as it used to be but is improving really really slowly.

Maybe its obvious but i stay away from alcohol, last year I had a glas of wine at dinner sometimes but i believe that really counteract the rehab process so stopped all completely.
I started drinking Tea and turned it into a hobby, very relaxing so recommend that. Stopped with coffee and anything with caffeine since its not doing any good for my brain and my progress. Eating more fruits and vegetables and felt a big difference in healing process.

Sorry for the long writing and spelling.
I wish you all the best and a healthier future, all you guys are awesome!!

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In May of 2015 I was in a catastrophic car accident. TBI, broken neck, 6 ribs, lung injuries, multiple fractures down back and my right ankle. After months of wearing neck and back braces, many therapies, ertc. northing much got better with my post concussive persistent postural and perceptual dizziness. For five years I have been dizzy every day with periodic relief. I walk every day even though it feels like I have a bobblehead and I feel lurchy. I ride a stationary bike, do water colors, sing in choirs and play the flute and piano. Bending over to pick up something causes a rush of dizzy as does moving about too quickly. I feel an intense pressure in my head and neck when I move around using my arms and eyes. Brain scan showed no changes. Neck blood vessels appear OK.
I would love to find treatment from anywhere. I fight depression but just keep going.

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Hi @strokesurvivordynamo, for some reason I didn’t receive your chat about your cerebellar stroke. I am very sorry for all you are going through. I can certainly relate because I also had a brain aneurysm effecting my cerebellum. As with you, I did not get any health warnings, nothing out of the ordinary; however, I do believe due to being healthy I survived. I was told by my neurosurgeon that the cerebellum is the part of the brain that gets effected from drinking alcohol so my symptoms are the same, nausea, vomiting, fall risk, and low vision. My disability is all physical. Luckily I have no cognitive deficits. I am in my late 50s. It has been over 3 years now that I have been dealing with the recovery. It has been a slow process but I feel I am on my own learning through trial and error because my medical staff has no answers. Like you have said, cerebellar strokes are not very common and to have survivors is even more uncommon making it difficult to get answers. What have you tried, any physical therapy? I have improved over the years where now I can walk with a cane. At start I was in a wheel chair. I still have difficulty with walking on any uneven surfaces like the lawn. I am planning for more physical therapy to walk outdoors around my house, basically the lawn so my brain will learn. That is my next challenge to overcome. Let me know how you are progressing. I know it is not easy but being consistent helps. My condition with motion sickness stops me from many activities but I still push myself to do a few things no matter how difficult they become.

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