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

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.

Hello!! Yes I am doing all I can. I went on a strict fat free vegan diet. It was suggested by neurologist that I learn a language and music. I am learning Spanish and Ukulele. Both are fun and challenging!!! I am doing everything I can do and not worrying about the rest. I’m still managing my own business and teaching sign language. Life is good.

Welcome to Connect, Nancy (@nancywootten).
Somehow I missed your first post on Connect. What an entry. You're attitude and actions are admirable, and we're glad you're here.
Am I understanding correctly that you will be returning to Mayo Clinic in November or December to redo some of the cognitive testing that you did at your first visit? In addition to grabbing life by the tail, enjoying it and keeping up with work, are you also doing specific cognitive exercises? Or is that unnecessary with your level of activity?

I have severe white matter disease also. I had no idea until I got a concussion in a golf cart accident. A brain scan led to an MRI which then led me to Mayo Clinic. I am 68 years old an extremely active. I teach and interpret sign language and am in a band at church. Since my diagnosis I started on a fat-free vegan diet and started learning the ukulele and Spanish. I don't feel like this diagnosis is a death sentence bur rather a new way of looking at my life. I do more, not less. I love more, not less. I want to start a blog about this because so many people do see it as a death sentence when really none of us have a guarantee that our lives won't end TODAY on our way to the store or crossing the street.

I plan on living the dickens out of my life, however long or short it may be. My husband and I have set upon upgrading our home to be a safer place for me and a nicer one. We moved my office into the Florida room so I can look at my newly landscaped back yard while I work. I wonder why I did not always live with this new improved attitude toward life!

I got back to Mayo Clinic in November or December and I'm planning to knock their socks off with my cognitive testing. I know this white matter will catch up with me sooner or later but in my 'in-between' time, I'm living life.

Good luck and may God bless us all!

Nancy

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......

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!

Hi Venki, that sounds like a nasty blow to the head. Only a medical professional can tell you the best way to assess the damage. Knowing your medical history, current condition and the number of diagnostic tests you've had and when, your neurologist will discuss with you the benefits and risks of how to assess the damage.

Did you see your doctor or go to ER after your fall?

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.

Glad you joined this discussion, EES1. Sorry to hear about the additional diagnoses adding to your complex medical issues of meningioma, cavernoma and now vasculitis. Of course, waiting for test results is hard. When is your follow-up to discuss the test results and next steps?

Hi @lenape, I add my welcome to you as well.
I moved you posts about cavernous to an existing discussion group about "Small Vessel Disease in the Brain & Cavernous Malformation." Click VIEW & REPLY at the bottom of the email notification to see all the past posts and meet fellow members talking about cavernous malformation and its effects. There are also some great resources shared between members about fatigue and cognitive thinking related to the disease.

Some members, like @caregiver49, have talked about fatigue. Others, @jeans and @sue60 have mentioned balance issues and falling.

Lenape, I encourage you to read through the past comments to learn about this slow progressing disease and to ask questions to the other members. Does your friend have any issues with balance?