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@colleenyoung

Welcome @jc2buds. This is what I love about Connect! @jeans posted a question about Cavernous Malformation. While I couldn't connect her with a past member or recent conversations, you saw her message and jumped in.

@jc2buds Kerry, did I understand correctly that both you and husband have Cavernous Malformation or just your husband? You also mention lifestyle change you can make to slow the progression of disease. What changes have helped you?

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Replies to "Welcome @jc2buds. This is what I love about Connect! @jeans posted a question about Cavernous Malformation...."

My husband has smell vessel disease of the brain he has had balance issues for aout 5 years than two years ago he had heart bypass surgery he devolped delirium in the hospital and after that his balance problem got 100 % worse and stayed thay way he hadva brief period last fall where he really started to improve but since then the disease has been progressing.if the dusease is in early stages you can slow the progession of it by keeping blood pressure under control as well as cholestrol stay active exericise your brain with crosswords computer work anything that challenges your brain if you smoke stop immediately eat a low fat diet all of which my husband wouldnt do now he has to work with whats left and its a stuggle for him walking is hard his eye sight has been effected every day is a challenge

The doctors suggested a low fat diet? Did they say any thing about exercise? Five years ago I used to run about 3 miles a day. The things I've read make me think that that kind of thing may be a thing of the past. My eyes are acting up. Some days it feels as if I have someone else glasses on. ( I don't wear glasses.) I've lived a fairly healthy life, no smoking, regular exercise and stuff like that but I am almost 60 and it is a progressive disease. They've recently moved my appointment up to June 20th. I'm glad about that. I want to hear what Mayo has to say.

I wish we lived cliser to a msyo clinic we dud go to johns hopkins they gave my husband some exercises to do in occpational therapy that helped with his hands his limbs have been affected i wish you the best of luck with your appiontment i know it feel like its hopeless but it helps to have someone to talk to

How is your husband doing by now? I am 58 and diagnosed with SVD and quiet frankly very fearful. I'm dizzy much of the time and stutter off and on for periods, then it seems to get better. I hope he is doing okay......

My doctors, all six, recommend fat free diet. It’s very simple but you’ll need an insta pot! Lol!

I have very little problems eating out. I’ve learned to talk to the chef and they love helping me.

I was told brain games were not helpful but to learn a language and music. I’m learning Spanish and ukulele. I think a good attitude is our primary defense . We have already taken steps to improve quality of life by having a really nice fence put up and all new landscaping done. I’m making my home a beautiful place to live!!!! Don’t worry. It’s a waste of life. Live and live all you can while you can.