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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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fairyfly | @fairyfly | Apr 30 7:32pm
In reply to @nancywootten "Hi Coleen! All the neurologist I talked to at home and Mayo said a no fat..." + (show)
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Hi Coleen!

All the neurologist I talked to at home and Mayo said a no fat diet was best but that it was not sustainable. They just don’t know me very well at all! I’m a fat free vegan Natzi!! They also suggested another foreign language so I am learning Spanish. Music was suggested so I am learning ukulele. It is a blast. I even joined a beach ukulele group. It’s been a year and I feel no different at all. Just saw local neurologist and I passed all his cognitive tests. That was very exciting for me. I’m living life!!!!

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@nancywootten Hi Nancy, do you have any favorite dishes to eat? Do you have favorite cookbooks or chef online you watch for vegan fat free meals? I have not made a profile just yet but will soon. I have Atherosclerosis, I was told it was mild about 3 years ago. I have sick since in lots of different ways since. So I have not had to check since. I am almost afraid to check on it now. Eating low-fat and no meat would be great to do. I have done before in my life just not seriously like I want to now. I am waiting on an apartment. It will be even easier to eat this way after I move, Thanks for your time._____Carolyn

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sarahvincent | @sarahvincent | 5 days ago
In reply to @jeans "I've been diagnosed with Cavernous Malformation of the right temporal lobe. I had a MRI because..." + (show)
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I've been diagnosed with Cavernous Malformation of the right temporal lobe. I had a MRI because I had severe headaches, some falling with black outs with weakness afterwards. I go into Mayo soon to find out more about it but wondered if anyone has heard of this? It seems to be kind of rare and sometimes inherited.

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@jeans ive had 3 strokes and only got told last year that i have a cavernoma thats been there tears but now its bled a few times. Hope your well

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iloveoaktrees26 | @iloveoaktrees26 | 5 days ago

Thank you gor sharing your experience.

Dr Pulliam, years ago, told me I had this. I did not really pay attention at the time. I witsh that I had!!
Now, i have major problems with it!!
He told me do not bend over or put my head down like that. He was spot on. If i bend over with my head down, down i got in a faint.
Dr Pilliam said to tell every medical person who touches me that I have this vascular disorder/dieade???
I do, some ask: what is that? None seem to care.

It helps me knowing laying down makes it better for you. Laying fown definately help mr!!
Sorry about spelling, loosing my eye sight.... i have had two strokes. Seizures. Damaged nerves back of ryes.
I wish you all the best.
Rise slowly it help little.
Ann

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