I have Cerebral Small Vessel Disease - so far caused loss of balance

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.

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

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.

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

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

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

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

@nancywootten

All of your activities are very impressive! I just recently finished taking a sign language class. It is a great activity for the mind and the hands! Between your eating habits and lifestyle you sound like you have found ways to be happy. Congratulations on that.

Teresa

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

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!!!!