Cerebral Small Vessel Disease

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 ir 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?

@bellisima

Does anyone has been diagnose with carvernos malformation

Jump to this post

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

REPLY
@bellisima

Does anyone has been diagnose with carvernos malformation

Jump to this post

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

REPLY

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

REPLY

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

REPLY
@traceg19

Hi I am 42 and just been diagnosed with SVD, it was found in MRI, my only treatment is aspirin, I also suffer from chronic fatigue syndrome, my head is constantly fuzzy with extreme fatigue worse than before with headaches also have problems with my right side, my doctor can’t tell me how this disease will progress or saying much at all to me! Any help and advice on this disease would be much appreciated! My cholesterol and blood pressure perfect, don’t smoke and haven’t drank for 6 months! Understand it can cause stroke and dementia!

Jump to this post

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.

Liked by kishanvasekar

REPLY
@traceg19

Hi I am 42 and just been diagnosed with SVD, it was found in MRI, my only treatment is aspirin, I also suffer from chronic fatigue syndrome, my head is constantly fuzzy with extreme fatigue worse than before with headaches also have problems with my right side, my doctor can’t tell me how this disease will progress or saying much at all to me! Any help and advice on this disease would be much appreciated! My cholesterol and blood pressure perfect, don’t smoke and haven’t drank for 6 months! Understand it can cause stroke and dementia!

Jump to this post

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

REPLY
@traceg19

Hi I am 42 and just been diagnosed with SVD, it was found in MRI, my only treatment is aspirin, I also suffer from chronic fatigue syndrome, my head is constantly fuzzy with extreme fatigue worse than before with headaches also have problems with my right side, my doctor can’t tell me how this disease will progress or saying much at all to me! Any help and advice on this disease would be much appreciated! My cholesterol and blood pressure perfect, don’t smoke and haven’t drank for 6 months! Understand it can cause stroke and dementia!

Jump to this post

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.

REPLY
@traceg19

Hi I am 42 and just been diagnosed with SVD, it was found in MRI, my only treatment is aspirin, I also suffer from chronic fatigue syndrome, my head is constantly fuzzy with extreme fatigue worse than before with headaches also have problems with my right side, my doctor can’t tell me how this disease will progress or saying much at all to me! Any help and advice on this disease would be much appreciated! My cholesterol and blood pressure perfect, don’t smoke and haven’t drank for 6 months! Understand it can cause stroke and dementia!

Jump to this post

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

REPLY
@traceg19

Hi I am 42 and just been diagnosed with SVD, it was found in MRI, my only treatment is aspirin, I also suffer from chronic fatigue syndrome, my head is constantly fuzzy with extreme fatigue worse than before with headaches also have problems with my right side, my doctor can’t tell me how this disease will progress or saying much at all to me! Any help and advice on this disease would be much appreciated! My cholesterol and blood pressure perfect, don’t smoke and haven’t drank for 6 months! Understand it can cause stroke and dementia!

Jump to this post

@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

Liked by kishanvasekar

REPLY
@venki

Hello everybody I am 55 years &as already mentioned I have been suffering from CSVD, Cerebral atrophy with sleeping & movement disorder. Last night my head was hit at a stone slab in the middle of the head & since then headache continues. When I walk i plan to put to my leg at one place but the leg goes to another place. Is it gait walking? How can I control this. No coordination with my brain and body. What is the remedy? How can I assess the damage without taking MRI. I have already taken 2 MRIs. Is it safe to take more MRIs? Kindly explain.

Jump to this post

@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

REPLY
@traceg19

Hi I am 42 and just been diagnosed with SVD, it was found in MRI, my only treatment is aspirin, I also suffer from chronic fatigue syndrome, my head is constantly fuzzy with extreme fatigue worse than before with headaches also have problems with my right side, my doctor can’t tell me how this disease will progress or saying much at all to me! Any help and advice on this disease would be much appreciated! My cholesterol and blood pressure perfect, don’t smoke and haven’t drank for 6 months! Understand it can cause stroke and dementia!

Jump to this post

@venki

I agree with @nancywootten. Giving up (or giving in) are not good options. They just create more problems.

Teresa

REPLY
@rpbrosa

At 71, I have similiar issues with balance and fatigue. I steadily increase the use of my cane. It appears my body is slowly wearing out which is a long way from where I was in the younger days. I blame this on Agent Orange exposure during RVN time but, but and but. I can drive but exercise is almost impossible except from a couch. Laying down is immensely more comfortable while walking becomes increasingly diffcult within minutes. Good Luck

Jump to this post

I think Yoga will help you immensely.Posies in sitting , lying down are available.Physical training helped me to recover from 30 days in ER and 40 days in hospital .Ihad severe heart attack, kidney failure in 2011.

REPLY
@colleenyoung

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

Jump to this post

I do Chair yoga also.My wife is trained Yoga teacher and I also learnt.We are in MN till Aug 8 or so.Will Love to share my experiences on Conquering Heart Disease.After careful evaluation , I stopped Statins in consultations with my Cardiologist.Fine now.

REPLY
@bellisima

Does anyone has been diagnose with carvernos malformation

Jump to this post

I was diagnosed and has surgery to remove it. Do you have one?

REPLY

I had a cavernoma removed from my brainstem 4 weeks ago. I’m wondering how long it took you to recover? I still have extreme heaviness and tingling as well as numbness in the right side. Will this eventually go away? How about your Bell’s palsy symptoms? I loved being at the Mayo Clinic and if I knew it would be this hard at home I would have tried to stay in rehab longer! Thanks for the replies.

REPLY
Please login or register to post a reply.