I have Cerebral Small Vessel Disease: How are you coping?

Thank you Theresa! I’m determined to delay onset of dementia as long as possible! Good luck!!

@nancywootten You are certainly off to a good start, you are an inspiration!! Teresa

Welcome to Connect, @traceg19 and @rpbrosa. Have either of you tried chair exercises or chair yoga?

Hello @traceg19 and @rpbrosa

I would like to add my welcome to you as you have posted to Connect.

As Colleen suggested, I would also encourage you to look into chair exercises. Tai-Chi is also available as a chair exercise. As a person with Parkinson's I can have trouble with balance and gait and I find Tai-Chi to be particularly helpful. Standing and/or walking for long periods of time is not helpful for me, but anything that can be done seated works well.

Has any physical therapy been suggested?

I look forward to hearing how you are both doing.

Teresa

Im 55 male & have been diagonized with CSVD last year. I am also using Asprin & Lipitab. But the problems progress as double vision, less concentration, uninterested in anything, limited physical & mental activities and so on. Doctors of no help. Its all our fate.

Don't give up! Don't see this as your 'fate'! Everyone dies and in all sorts of ways but we do have some control over our SVD and our attitudes while living it. I have a very advanced stage white matter disease and yet I still function. I still run my business and I do it well. I work out, play golf, teach American Sign Language and much more. I am learning to play the Ukulele and and joined a Uke group that meets on the beach. It's so much fun! I am also learning Spanish from a Spanish teacher and I formed a little group for that too.

What I'm saying is, life is what you make it. If we give up then the rest of our lives are truly ruined. What if I do only have a few years to live? What if that is true? I'll tell you that I want to live that life to it's fullest! I want to love every single day that I wake up STILL NANCY. I can't see very well anymore but I can see well enough. Can't read the print in your favorite book? Get a Kindle and enlarge the print. Jump the hurdles your brain throws in front of you....don't just stop and stare at them.

My Dad had dementia and I spent a lot of time in a nursing home with him. Most of the people there were really not there anymore. I gotta tell you they were all pretty happy! I would stop at the Dollar Store and pick up little stuffed animals or other silly things and give them out to the patients. It was as if it was Christmas Day! This is not about me here, it's about them. They were not unhappy!!! I don't see this as so bad. My Dad was happy until the day he died. Sometimes he knew me and sometimes he did not. We had ques that would seem to wake up a part of him like Indian wrestling. I would prop my elbow on a table and he was right there to fight me and he could still beat me too. I also would lean my forehead into his and he could look out of those hooded eyes at me and I could see that he knew me for that moment in time.

SVD diagnosis is scary however one of my friends was just diagnosed with terminal cancer, another has Non Hodgkins Lymphoma and she is having chemo that makes her so very sick she can barely get out of bed. My Mother In Law died from that and it is a painful death! I saw a small child with brain cancer this morning.... So if your asking, WHY ME? My personal answer is WHY NOT?

There is joy in life. Don't give it up just over a diagnosis. They don't know enough about it to tell you 'how long you've got'. I met a man in my neuro office that was diagnosed with very severe SVD 15 years ago and is he's STILL BOB. He had hope, he did not give up.

Refuse to give up! Go to the gym! Live!

Nancy

wow Nancy that is a beautiful writing and thank you for sharing. I'm smack inthe beginning of this disease although my brain images show moderate WMD. I've only recently been diagnosed I am trying to have the same attitude as you are although I find myself sometimes missing the old me. Friends have been encouraging which helps as well.

Dear Venkatesh,You can overcome the problem thru regular practice of Meditation, Yoga , Pranyam, Exercise .You should try to walk, Exercise in Sunlight and learn Yoga at earliest.Chanting and Prayers are very effective.Simple Veg Diet , Fruits and dry fruits are wholesome and good .Whaever is good for heart is good for brain.I have suffered severe heart attack 7 years back and at times I do get similar symptoms as above.I take Aspirin BUT stopped Statin.I think Statin does not help .I read some research showing Low Cholesterol increases risk of stroke.I wonder whether Doctors Agree ! My Prayers for your speedy , miracle like recovery thru Divine Intervention.It has happened to me.Pray intensely and HE helps.Om

@kishanvasekar You are so right when you say, "what is good for the heart is good for the brain." That includes exercise and the right foods.

Teresa

@venki

Check with your doctor about MRIs. It would probably be good to have the injury from the head trauma assessed in some way. I have had lots of MRIs (more than I can count).

Are you involved with physical therapy or other exercise programs? This was most helpful to me with Parkinson's. You definitely need to be doing something to impact the coordination problems.

I look forward to hearing from you and knowing what steps you are taking to improve your walking.

Teresa