1. < Stroke & Cerebrovascular Diseases
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Cerebral Small Vessel Disease - How are you coping?

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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red79 | @red79 | Mar 30, 2024
In reply to @sally12345 "Hi, I was diagnosed with csvd 3 years ago. I had an episode of off balance,..." + (show)
Profile picture for sally12345 @sally12345

Hi, I was diagnosed with csvd 3 years ago. I had an episode of off balance, dizziness, lose of bladder a nd bowel, heavy sweating, diagnosed with having had a stroke. I feel at this point it's effected my everyday life. At the time I was shocked with it...but now, I am tired, lack of energy, off balance, very sore eyes as well now. Also heart palpitations ...I think it's worsening...At the 3 rdyear point. Up to last year I was walking 35 miles a week. Chopped a nd stacked my own wood.. Now I am weak...it's frightening. How do you keep going with this.

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Hi Sally 12345,I'm 45 and my eye sight change so now have 1 pair glasses 4 TV , reading,then my other pair 4 outside 4 distance,I was told I was lucky to get to 45 years old with out glasses.

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red79 | @red79 | Mar 29, 2024

Hi sue 60 I've also got small vessel disease of the brain,stay strong sue60

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sally12345 | @sally12345 | Mar 26, 2024

Hi, I was diagnosed with cabs in jan.2020. I have ti.as we're my balance is co.p!sadly off , hard to excessive or walk straight, than it vanishes. I am having a lot of bouts of forgetfulness, leaving objects places , forgetting I put the kettle on.etc. The white matter is vanishing in my bilateral both front cortexes. I keep telling my drs. I want an MRi as it has been awhile to see if it's progressing far but no is the answer. It's frightening not knowing .

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red79 | @red79 | Mar 24, 2024
In reply to @debbic715 "Thanks keithl56. So good to hear from you. I’ve had that same problem with memory but..." + (show)
Profile picture for debbic715 @debbic715

Thanks keithl56. So good to hear from you.
I’ve had that same problem with memory but its not a big problem. Very common as you get older. I dont worry about it at this point. I do mental exercises to try and help keep my brain working. Theres an app i have on my phone called Elevate that i use.
I dont know if i have had TIA. That terminology hasn't been used. But I've had something according to what they see on the MRI. I haven't been aware of any symptoms. But i have been falling so maybe thats from TIA. I wonder what causes it to happen.
I walk my dog several times a day and i am very careful to watch where i am stepping to avoid my balance from causing me to fall, but i am still wobbly sometimes when doing something like stepping on or off the sidewalk and i stick to firm ground. I wish i didnt have to wait so long to see a neurologist to explain more to me.
Have a good day. Keep in touch. Thanks

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Yes debbic715 it's annoying having to wait for appointment with neurologist.stay strong.

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red79 | @red79 | Mar 24, 2024
In reply to @red79 "hi Kerry mapstone,I have small vessel disease,i wondered what you meant when you said some days..." + (show)
Profile picture for red79 @red79

hi Kerry mapstone,I have small vessel disease,i wondered what you meant when you said some days are worse than other what are symptoms your husband having as I don't know anything about this.im still waiting on appointment with neurologist and haven't heard anything since last October when neurologist called me.

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Sorry to ask Kerry mapstone,

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red79 | @red79 | Mar 24, 2024
In reply to @colleenyoung "Hi @sue60, welcome to Connect. I'd like to connect you with @caregiver49, who is also dealing..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Hi @sue60, welcome to Connect.
I'd like to connect you with @caregiver49, who is also dealing with small vessel disease and would like to talk with others. Her biggest issue at the moment is with unrelenting fatigue.

Sue, do you struggle with fatigue as well?

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Hi @caregiver49, I'm really struggling with fatigue.

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red79 | @red79 | Mar 24, 2024

Hi sue60 I'm getting tired very easily when walking or doing housework,lots of really bad headaches,I'm lucky I got supportive family.could sleep constant if I had chance,you just have to do your best to keep your mind off it,I do jigsaws online and games on phone.the friends I had B4 saying what I got are non existent 😞

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red79 | @red79 | Mar 24, 2024
In reply to @angelicscripts "It could be however I've lumbar stenosis along with Cervical Spondylostis discs gone with encroachment of..." + (show)
Profile picture for angelicscripts @angelicscripts

It could be however I've lumbar stenosis along with Cervical Spondylostis discs gone with encroachment of nerves ..plus an Arachnoid Cyst...I'm under uro/gynaecology
Neurosurgeons are dubious about operating that is When bladder/bowel loose all sensation ..if issue with bladder see a specialist...

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Oh I'm sorry to hear this,

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angelicscripts | @angelicscripts | Mar 24, 2024
In reply to @red79 "Hi angelic scripts is that the reason we have bladder problems." + (show)
Profile picture for red79 @red79

Hi angelic scripts is that the reason we have bladder problems.

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It could be however I've lumbar stenosis along with Cervical Spondylostis discs gone with encroachment of nerves ..plus an Arachnoid Cyst...I'm under uro/gynaecology
Neurosurgeons are dubious about operating that is When bladder/bowel loose all sensation ..if issue with bladder see a specialist...

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red79 | @red79 | Mar 23, 2024
In reply to @jc2buds "My husband has small vessel diease of the brain and i agree dictors cant really tell..." + (show)
Profile picture for Kerry Mapstone @jc2buds

My husband has small vessel diease of the brain and i agree dictors cant really tell you what to expect some days are worse than others but all days are challenging

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hi Kerry mapstone,I have small vessel disease,i wondered what you meant when you said some days are worse than other what are symptoms your husband having as I don't know anything about this.im still waiting on appointment with neurologist and haven't heard anything since last October when neurologist called me.

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