How do you cope with the fact that you had a stroke?

Posted by michele70 @michele70, Feb 9, 2024

I had a stroke in early 2023 and missed Christmas completely. This happened at our vacation to go skiing with my sons and grandsons when I had a stroke where I was completely out of it My only memory was I was sitting outside in the snow in the middle of the night at a place we were staying in my pajamas and freezing to death just hoping some one would drive by and help me. I didn't know where our room was.

Back inside the room my husband woke up and realized I was gone. My older son with two little boys were sleeping in the living room fold out and when my husband came out into the room and said where is Mom? My oldest son said, "shit, she went out the door." There I was and I don't remember their rescue but husband put me back to bed and put heating pads we always travel with.

They now knew that it's not altitude but something else. So the next morning they brought me to the hospital in Aspen and they scanned my my brain and said she needs to get to Denver for the care I would need. I have no memory of this but was taken in a helicopter from Aspen to Denver where they realized I had a stroke. I was in the ICU for four days when my husband emailed a Mayo doctor he knew who was in the area of strokes.

They sent me back to Rochester by an airplane with medical staff and I was at St Mary's for countless days and then went to rehab to learn how to walk. As you may know if you lay in bed for 108 days you are as helpless as a baby. I was in rehab for two and a half weeks before I went home. So now I could walk with a walker since I was so weak. And started my plot to get better strength in my body. One of my doctors told me that walking was the best healing of my brain.

We have a family cabin in Wisconsin that we always go to because I have three sisters and their husbands who all live around this former old resort from the 50's . And I went out every day and began my therapy starting by walking 3 miles. First with my walker. Then with just a cane. Life was coming back to me. All this family and great fresh air were the only medications I needed.

As you may feel PTSD after the thrill of being able to walk and talk. I often worry this will happen again but was told by my doctor I have a 90 percent chance of having another stroke. But still I worry on occasions. So my desire is to come and talk with other stroke patients about how I improved my health and got stronger over time. The key is to never give up. Keep trying to improve your body strength.

When I meet people now and tell them I had a stroke last year they are floored and think I wouldn't know.

Some funny things I heard I did was while I was unconscious and couldn't talk my niece came to visit me and was there helping to feed me lunch and what ever it was I opened my eyes and said, "This tastes like dog shit!!!" She said out loud, she is there!!!!

The work my husband did for me was astounding. He came every day to the hospital to be with me and made sure i was getting the stuff I needed. For instance I was impaired on my left side of my body and Steve , my husband, did leg exercises every day and for my arm. Mind you he is a consultant at Mayo and runs a lab so had work to do all the time but would bring his computer with him and try to get some of his work done. He is a scientist so not have to see patients.

All this is to say it's so important to have an advocate for the stroke patient. Usually most of us don't have that because of a number of reasons. But what I tell recovery patients is to do everything your physical therapist tells you to do. When in rehab that is the special work we need to get stronger is go to every class and session and don't skip a day.

From a stroke history I have a lot I can share patients. But I would also like to talk to the physicians who work with Stoke victims. I have some good advice. One thing my husband told me is it was time for me to move out of St Mary's because there is nothing we can do for her anymore you need to put her in a home. And these doctors said all of this right in front of me. Steve looked over to me and tears were running down my face. So don't give bad news in from of the patient. We are unable to talk but we can understand. This haunts me that maybe these doctors were right and I will never recover fully.

I want to talk with training doctors and tell them this. DON'T GIVE BAD NEWS IN FRONT OF THE PATIENT!!!

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

GDCM | @gdcm | Apr 19 11:01am

My stroke was last June 2025, in the right Hippocampus. I am always worried, but try not to think about it. I’m on Metropolol, Eliquis 5mg and baby aspirin…also, had the stroke after a Watchman was implanted in my left atrium. I go to Mayo Clinic, the doctors think the blood clot came from the aorta, but they aren't certain. Ive had multiple TEE’s to check the placement of the Watchman to make sure it’s solid and not leaks. I was unable to walk, because I would fall over..no balance at all!

Also, I had severe short term memory problems, and word retrieval issues (I often created close-to words, but not correct i.e. wood-breaker vs woodpecker; the car isn't listening vs the car’s not looking!). I have recovered very well for the most part. Still have some short-term memory loss, but my 70-something friends say it’s no different than what they deal with daily (I didn't have the issue prior to my stroke.) My creative wording has lessened to a great deal, but worsens during stress…it’s nothing that I cant live with.

What I really want to change is my lack of ability to walk confidently on my own. I visualize a gyroscope in my head, and mine is a click or two off-kilter. Around my home, I do ok because I can touch a chair, wall, etc to keep me on course. I walk like I am a bit tipsy. It takes hard concentration and effort to walk basically straight for a short distance. I hold my husband’s hand, or arm when we leave the house (many comment “how romantic!” what they don't realize is its to keep me walking with out bumping into something or failing off the curb, etc.). I did do weeks of Advance Neuro Rehab and “graduated” with their help and a lot of hard work. I was thrilled. I wrongly assumed my walking would improve over month…but it will be 1 year post-stroke this June. Because of this, my stroke is always in my mind.

I also wonder if a quicker diagnosis of stroke could have helped lessen my disability. Because Mayo Clinic is 45 minutes away from our home, (when I woke up unable to get up or understand what the time was on my iPhone), the ambulance took me to the closest hospital, rightfully so. The ER docs kept saying I had vertigo which took up a bit of time. Their thought process changed once I developed double-vision ( because my brain tissue was swelling and compressing the optic nerve). This is when they started running, and calling the Stroke Team, got me a Contrast CT/MRI (cant remember which one) and found the damage to my Hippocampus. By then, I couldn't even get out of bed to use the bathroom….for many days. I was in the hospital 1 week and then transferred to a Rehab Hospital for 2 weeks. I think started Home therapy for 2 weeks, and then I did daily Advance Neuro Rehab (they changed my life, I am still so grateful to them! I am happy to deal with other deficits but really wish I could walk on my own & drive (when I turn my head back and forth, I get dizzy & nauseous. This weekend I wrote my doctor at Mayo and asked if there is anything I can do to get over this last hurdle….

wabellar23 | @wabellar23 | Apr 21 3:43pm

You're so right. Never listen and believe to a bad dx. I was a practicing nurse for 20 + years as an LPN before graduating as an RN. I practiced as an RN but because of hemorrhagic stroke it stopped me from doing what I loved. I cared for people with this condition, now it's my turn. I rehabbed (continued by myself), it's easy to give up but I know ONE can do it. You can improve yourself through exercising. And you're so right, rehab therapy is so important but one must not stop when the rehab ends, you keep going. It's been 3 years now but I am still "rehabbing." I know you will never be the same as before but YOU CAN improve it. Keep moving. Yeah it's hard and it sucks but this is the new you, learn to accept it and move on. It's never easy but learn to manage it the best you can. Good job on what you did, never stop. Goodluck.

valeriedawn | @valeriedawn | Apr 22 11:51am

Hi Michele,
So glad that things are getting better for you now but so sad to hear what you had to go through along the way! I also had a (mild) hemorrhagic stroke and ran across both sensitive, helpful, considerate medical providers and those that were really clueless, harsh and insensitive during my 3 or so weeks in the hospital. That was 9 years ago but in November 2025, I fell when hiking with my husband, broke my nose and had another bleed. This time my overnight stay in the hospital was truly horrible. I find that since the pandemic the medical field is so overwhelmed. Too many providers are suffering from burn-out and vicarious PTSD from all the trauma they experienced, making them treat patients with no compassion and more like robots with no feelings.

I am a licensed clinical social worker providing mental health therapy but only able to work very limited hours due to my symptoms and disability. I hope sometime that I may become an advocate for patients in situations like you have described. I am also a writer, mainly writing fictional books, but I hope that someday I may write about my own life and medical story.
I have a rare disease called Primary Moyamoya disease diagnosed in 1998, that contributed to my stroke 9 years ago. I had surgery in 1998 that helped extensively but since I had the stroke, I realize that I still have to be careful!
I also want to educate anyone who has had a stroke to make sure your medical provider looks into evaluating you for Moyamoya disease, which causes a progressive narrowing of the main blood vessels to the brain. It shows up clearly on an MRI and the name moyamoya means "puff of smoke" and refers to how the blood vessels look like a puff of smoke on the MRI. If the blood vessels have narrowed significantly, surgery may be needed to help you survive.

My recommendation to anyone who has had a stroke is to ask your doctor about evaluating this possibility.
I wish you and everyone else here luck in your recovery! For me, acceptance, physical and mental health therapy, love and care from my husband, family, friends and community, walking and swimming, being outdoors, significantly decreasing my workload and stress level, doing things I love, and relaxing were most helpful in recovering!
Also, finding someone who can advocate and support me in dealing with the medical system was essential!
Best wishes,
Valerie.