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Posts (12)

Aug 6, 2018 · Migraine for 28 days and counting HELP in Brain & Nervous System

I don't like your boss! I have WMD and my thinking has slowed down some. You make me feel so grateful that I am self employed. I have turned most of my work load over to my daughter but I do have trouble staying on task so I totally understand how difficult this is for you. Different cause with same result!

Good luck with your efforts. Migraines are terrible. My daughter suffers as do several friends. I once found a coworker curled up ON HER DESK in the dark because she had a migraine but felt she could not leave. She works for the Department Of Defense. You are not alone. As well as seeking medical help I hope your are doing all the things at home that can be done to avoid the migraines. My daughter had MANY food triggers and now she has her headaches down from several a week to a few a year. She can't have any alcohol or chocolate. Some cheese bothers her also.

We humans are really fragile and must be our own best advocates for good health!


Aug 2, 2018 · Getting Motivated for Cognitive Exercise in Living with Mild Cognitive Impairment (MCI)

I can't begin to tell you how much fun I'm having learning to play my ukulele. I even joined a beach group I found on the 'nextdoor' application on my phone.

I'm also learning Spanish and while it's harder than the Uke it's still fun and quite challenging! For someone with Severe White Matter Disease I feel remarkably normal and happy. I am more sensitive than I used to be but it's often that I get down or hurt feelings. When I do I can still connect with my intellect to talk to me and tell me it's probably not real and to wait 3 days. Almost everything changes in 3 days!!! Can't figure that one out except that my PMS used to last 3 days when I was younger and I would track it so I could tell if what I was feeling was real or not.

Still a little weird in Largo and loving life!


Jul 25, 2018 · Planning for the Future: Advance Directives in Living with Mild Cognitive Impairment (MCI)

I called my primary care doctor today and they do have a packet there with all the information in it that I will need to get started. To others: They said they did not and I should look it up on the computer. In an effort to be a good advocate for myself I asked her to ask her office manager if they had it. After checking she said they have a notebook that I can come get today. YAY!

Thank you Dr Shandera-Ochsner! We all need the guidance you offer.


Jul 24, 2018 · Cerebral Small Vessel Disease in Stroke & Cerebrovascular Diseases

I loved your post! I loved what a great advocate you are for yourself. That is so very important regardless of what condition you have. If you know something is wrong you keep trying until someone pays attention to you.

Good for you Brenda!

Jul 19, 2018 · Planning for the Future: Advance Directives in Living with Mild Cognitive Impairment (MCI)

Thank you for this article. I have MCI with severe WMD so I could get worse quickly. I'm doing really well right now and even taking steps to delay onset of dementia such as fat free vegan diet, music and Spanish. I do want to get this done and have an appointment with an attorney estate planner next month. Is that not the correct place to start? It's all confusing and nobody seems to know much about the order of things. I have been diagnosed there in the Mayo Clinic.

Thank you!


Jul 10, 2018 · Cerebral Small Vessel Disease in Stroke & Cerebrovascular Diseases

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!


Jul 8, 2018 · Cerebral Small Vessel Disease in Stroke & Cerebrovascular Diseases

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

Jul 7, 2018 · Cerebral Small Vessel Disease in Stroke & Cerebrovascular Diseases

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!!!!