I have Cerebral Small Vessel Disease - so far caused loss of balance

Posted by sue60 @sue60, Apr 11, 2016

I have vascular small vessel disease that so far just has caused a severe loss of balance. I walk with a cane, but it is getting harder. Likewise exercise is not easy. I still drive short distances. I feel perfectly normal lying down and it is so much easier to do that. The sad part is I don't really see anything that is going to end this as otherwise I am healthy. I know there are many worse things. Does anyone else have this and how are you coping?

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Hi,
I wonder if the left suffers more with right footed people, the right being the dominant foot is used to leading. I find my left leg is instructed to step following the right, but occasionally it doesn't happen. The instructions seems to be lost between the brain and muscles doing the work. At 73 the brain has learnt to check the left has taken the step before taking the right step and I notice I concentrate more on walking than ever before. I'm able to hang up my walking sticks for the moment with my new ability to react quick enough to catch myself and just stumble a little.
Cheers

REPLY
@cheyne

Hi,
I find it remarkable that mostly it is the left leg that is problematic with a lot of people. I get intense migrains in the right rear of the brain which I believe is the motor control part of the brain. I'm not sure this has anything to do with anything, but it is just another symptom unexplained. Possibly CSVD is more advanced in some areas of the brain than others. I wonder if it relates to being right footed or left footed. I happen to be right footed. Just when I think I have a handle on my situation I'm forced to review my plight with yet another twist. The only end I see for me is to try and ignore it all, until I am no more.
Cheers

Jump to this post

Yes unfortunately I have a week left side and one or two of my do. my mother had a weak side and she had this also.
Her nurse constantly told her to lift her leg higher when walking.

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@dle25

Hi, I am 68, I too was diagnosed at the moderate level. I keep as busy as possible, however watch a lot of tv. Anything I do I am always fighting thru pain in my legs or worried about the dizzy thing, all very tiring. So I do a chore, sit down and repeat that all day. I drive as little as possible. I have two wonderful old dogs that are my life line they keep me going everyday. What do you find to do that is enjoyable?

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I was put on antiepileptic meds. They caused severe balance issues dizziness. I felt misdiagnosed. I got off of it. I’am less and less dizzy all the time I’m hopeful that scared to try riding a bike again I go up and downstairs a lot during the day that seems to help build up my muscles. I think it’s really important to if you can afford therapy to go to therapy.

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I also have worsening CSVD. My doctor sent me for vestibular therapy. I think it helped and I continue to do the recommended home exercises. It's not a magic bullet but every little bit help.

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@lizjohn

Every little bit helps; it is just nice to be able to talk to people who are experiencing the same thing. I too have to concentrate on walking, especially in grassy areas. I seem to lilt to the left when I walk. I have gotten so I take my husband's hand whenever he is with me, that seems to help with the balance issue. It is frustrating not being able to do the things I used to do with ease and have to think about every move I make. I continue to try to bowl, not very good at it anymore but I bowl with ladies like me who are older and experiencing aging issues. That seems to help also. Good luck to you and Happy Easter.

Jump to this post

Hi,
I find it remarkable that mostly it is the left leg that is problematic with a lot of people. I get intense migrains in the right rear of the brain which I believe is the motor control part of the brain. I'm not sure this has anything to do with anything, but it is just another symptom unexplained. Possibly CSVD is more advanced in some areas of the brain than others. I wonder if it relates to being right footed or left footed. I happen to be right footed. Just when I think I have a handle on my situation I'm forced to review my plight with yet another twist. The only end I see for me is to try and ignore it all, until I am no more.
Cheers

REPLY
@cheyne

Hi,
With both CSVD and Autonomic polyneuropathy both having similar symptoms it is difficult to know which is causing what. I never associated CSVD with my balance issues but have gone from having difficulty standing and walking to being able to walk and stand well. In the short time since diagnosis I have forced myself to stand and walk, always pushing to do it better. I have found that concentrating on what I'm doing works for me. No longer is my ability to stand and walk automatic, the more I concentrate the better I manage until my attention is diverted then I struggle again. With many health issues going on and little medical help I do what ever I find suits me best, actively managing my situation to my best advantage. This may not be helping my health issues but trying to be comfortable is my focus despite them all.
Cheers

Jump to this post

Every little bit helps; it is just nice to be able to talk to people who are experiencing the same thing. I too have to concentrate on walking, especially in grassy areas. I seem to lilt to the left when I walk. I have gotten so I take my husband's hand whenever he is with me, that seems to help with the balance issue. It is frustrating not being able to do the things I used to do with ease and have to think about every move I make. I continue to try to bowl, not very good at it anymore but I bowl with ladies like me who are older and experiencing aging issues. That seems to help also. Good luck to you and Happy Easter.

REPLY

Hi,
With both CSVD and Autonomic polyneuropathy both having similar symptoms it is difficult to know which is causing what. I never associated CSVD with my balance issues but have gone from having difficulty standing and walking to being able to walk and stand well. In the short time since diagnosis I have forced myself to stand and walk, always pushing to do it better. I have found that concentrating on what I'm doing works for me. No longer is my ability to stand and walk automatic, the more I concentrate the better I manage until my attention is diverted then I struggle again. With many health issues going on and little medical help I do what ever I find suits me best, actively managing my situation to my best advantage. This may not be helping my health issues but trying to be comfortable is my focus despite them all.
Cheers

REPLY
@tcainaru

I ride my bike to try to get exercise. I do not get dizzy, but do experience light headefness. What i have been told by the neurogist is that many older people have CSVD. That almost 100 percent of people over 90 have it. Has affected my energy also, but get this weak feeling that last couple of years.

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I feel like one by one I am giving up things I love to do. I am working real hard to find new things to do in my new world. I’m so glad to find this group to share things with and maybe pickup on some new things. Reading your posts I am reminded of an issue that should have been a clue. Probably 2020, maybe further back, I wanted to start riding bike in my retirement. I live by a very popular bike trail. Bought a nice bike and long story short I couldn’t ride it in no way. Well I ended up with a trike. I was probably in the silent/ mild level of CSVD, affecting my balance. Anyway, I am looking forward to sharing. Thanks!

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@dle25

Hi, I am 68, I too was diagnosed at the moderate level. I keep as busy as possible, however watch a lot of tv. Anything I do I am always fighting thru pain in my legs or worried about the dizzy thing, all very tiring. So I do a chore, sit down and repeat that all day. I drive as little as possible. I have two wonderful old dogs that are my life line they keep me going everyday. What do you find to do that is enjoyable?

Jump to this post

I ride my bike to try to get exercise. I do not get dizzy, but do experience light headefness. What i have been told by the neurogist is that many older people have CSVD. That almost 100 percent of people over 90 have it. Has affected my energy also, but get this weak feeling that last couple of years.

REPLY
@tcainaru

Hi, I am a 72 year old diabetic. I have moderate CSVD. Noticed the past couple of years my balance and energy are bad, but have had insomnia the last couple of years. I had to stop working because of the symptoms. Walking is changed too. It's hard for me to distinguish if what i feel sometimes is from diabetes or CSVD? I am also interested on what others have.

Jump to this post

Hi, I am 68, I too was diagnosed at the moderate level. I keep as busy as possible, however watch a lot of tv. Anything I do I am always fighting thru pain in my legs or worried about the dizzy thing, all very tiring. So I do a chore, sit down and repeat that all day. I drive as little as possible. I have two wonderful old dogs that are my life line they keep me going everyday. What do you find to do that is enjoyable?

REPLY
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