Life After Stroke

One major thing I learned the first few years after my stroke is that depending on who you talk to, you’re going to get an incredibly different impression of life after stroke.  There is a gigantic difference between talking to someone that’s years out and someone that this recently happened to, whose life is newly devastated.  Giant difference.

I received an e-mail a few days ago and it made me remember how helpful this place could be.  Talking to me, which I will be glad to do anytime, is going to be a lot different than talking to someone in the midst of all the hell.  Not that I don’t remember the pure hell that was my existence for those first 2 years after the stroke, but I’ve worked INCREDIBLY hard, I’ve done A TON of research, I’ve not taken crap from some people and cut some people out of my life that were hindering my recovery and I have managed to get back to a quasi-normal life.  I got married, just celebrated my 1st anniversary, got back to doing a job that I love, and am going to move to sunny Florida very soon.  Things are good.

I’m way past those initial feelings of utter hopelessness.  Those first couple of years post-stroke were absolutely horrible and often when I think about it I’m shocked that I voluntarily stayed in this world.  But I did.  The hell stops, life gets back to quasi-psuedo-normalness for most people.

I wanted to write this post for the person that e-mailed me and anyone else who is newer to the trauma.  Connecting with others going through a similar thing helps a lot.  For me, it was really helpful to talk to other younger people that this happened to, whose lives were turned upside down and inside out at a young age, I was 30 when it happened.  It helped.

Here is the e-mail I received…..

Hi Amy,

Do you still use this blog? I wanted to contact you because my husband had a cerebellar stroke that affected both sides of his brain also. He has been in the hospital for 2.5 months already. He has a long road ahead of him. He’s 37 years old and we have a one year old and a three year old. This is so hard my world has been turned upside down.

I hope to hear from you.

I can give tons of advice, but it won’t be the same as talking to someone in a similar phase of “after-life.”  Anyone out there think you’d like to connect with this e-mailer?

Categories: Brain stuff, Health, Recovery, Stroke stuff

27 replies

  1. My wife had a cerebellar stroke about 5 years ago at a relatively young age. She was in the hospital (for about 5 months and for the most part was unresponsive) before she got “well enough” (medically stable) to be allowed home. From there it, it was a couple of years of various types of rehab (speech/cognitive, physical, occupational). She stills suffers from ataxia, balance issues, impaired vision and battles with depression daily.

    Not knowing exactly what happened to and or the condition of your husband, I would not want to hazard a guess on a prognosis or compare his situation with my wife, but from my experience in talking with other stroke victims, cerebellar strokes can be very debilitating. I would be happy to discuss more, but as a primary caregiver to my spouse for the long haul, I would urge you to take good care of yourself (even while your husband is in the hospital), but also to fight as hard as you can to make sure he stays there for as long as your insurance will pay for care and rehabilitation. Fill free to ask me anything you want. Our situations may not be exactly equal, but I can feel your pain in your question. I struggle daily in second guessing what I could have done better, but continue to just take it one day at a time.

    Sincerest hopes for rapid recovery,


  2. Thank you for replying to this post Jeff. I am the one who had emailed Amy. I am really struggling with how my life will be from here on out. We have twin young boys age 1 and 3. My husband had his stroke October 2nd and is still in the hospital and will be for a very long time. Just wish I had more answers on his recovery. We need a miracle.

    • Wow. I’m speechless too similar to my story. My 1 year anniversary for my cerebellar stroke was Oct 2. I had a 3 week old and a 3 year old! Stay positive because miracles do happen and life gets better

      • Wow, great job Kilee. Were you able to recovery quickly from your stroke (get out of the hospital)? I think its great that you are able to use keyboard. Have you been able to get through rehab and return to an otherwise somewhat normal life?

  3. Please give her my email. I’m one year out but I had a 3 week old and 3 year old when I had mine.

  4. Erika,
    Are you on Facebook? There is a great support group called “Young Stroke Survivors.”
    It helped when I needed it most.
    Much love and prayers.

  5. Also, Erika, I agree with Kilee, stay positive and strong. It can be be difficult in hospital surroundings. Has your husband been able to start any kind of rehab yet?

  6. i just had a cerebelller stroke I am 27 Dr’s says I am very lucky I was in the worst depression in the hospital because i could not feel my hands & feet the first few days. Once I got home and started to try and get up I noticed I was very weak I am unable to open a bottle of juice or hold a cup or do anything for myself really. I have a very long road of recovery ahead of me. I am reading all of your stories and you all give me hope please know you are all in my prayers and we are all strong we survived we must stay positive if not for ourselves then for our families.

  7. Hello, I just found this blog and I am truly grateful I have. I had 4 celebral strokes 7 months ago and just started to be able to read again without headaches(actually they still come but much later) I am 35 and presented a lot like Amy, out of the blue, and was misdiagnosed and sent home before I was sent to a different hospital to deal with my case. The past few months have been difficult with the doctors I see telling me what I’m experiencing and not listening. They are following guidelines that apply to most but if I have a symptom not listed it is ignored. I have received the best care in speech and occupational therapy. So I’m still ‘in it’ trying to get answers but found this blog inspiring. Having no ‘filter’ is changing my life but this was the only place I feel like it’s a semi-normal occurrence and I’m not alone. It also made my husband feel better as he is the recipient of my no filter most of the time. I just wanted to express my gratitude for finding this blogger. I have found little on this type of stroke.

  8. Like Stephanie I found this blog and am very grateful. I was researching information when I stumbled across this page. I had my stroke 9 months ago. I am a Migraine sufferer so when I had the stroke the Paramedics and the ER doctors were treating me like it was JUST a severe Migraine. I spent almost a day in the ER trying to make the headache and vertigo stop even though I told them I’d Never had one like this before.

    I am not a young stroke sufferer but I didn’t think of myself as that old in my mid-50’s either. But now I feel very old. I walk slow with a cane, if I go out for a few hours one day I need to rest for the next day or two as my body just feels worn out. My right hand shakes, is un-coordinated. When walking it is kind of like I’m walking with my left foot on solid ground and my right leg on a dock over the ocean, and I get seasick.

    I’m going to read the blogs and comments here ( several times and hope that I can retain some of it) But at least in reading this I’m finding that I’m not alone, I’m not crazy and that there is hope.

  9. Hearing someone who’s been there say that it gets better is a HUGE relief. You don’t how much that helps. The doctors (pretty much all of them) had that same attitude of ” you’re young and the kind of stroke you had means you’ll be back to your old self in no time” The neuro filled out disability paperwork for my job for 6 months and gave be the impression that if I did the PT that I’d be “right as rain” in 6 months. I did my PT 3x a week, walking the 1/3 of a mile to the bus stop in the Phoenix summer. My 6 month anniversary came and went and I’m not right a rain.

    The Depression set in big time.

    • Good. I’m glad it gave you relief. Neurologists are umm ( insert pejorative here.). 6 months right as rain is a joke to have told you. Recovery is going to be extremely slow but it gets way better. I’m not near the way I was before the stroke after almost 6 years but I’m doing very, very well.

  10. Just found this blog… my stroke was four years ago this week… recoveriy is slow and Im glad to read orhers find it so BUT steady…. I was feeling discouraged…..

  11. Today is my 5 year anniversary. Most people upon meeting me would never know i’d survived a stroke. But I’m intensely aware of the lingering deficits. While I walk unassisted, I tend to drift a bit and a quick pace is difficult…forget jogging or running. I have what i’ve come to call “bad brain days”. Yesterday my speech was sluggish and slurred but I may have been the only one who noticed.

  12. I had cerebellar stroke followed by surgery of cerebellum. I was originally told 80 to 100 % recovery in 3 or 4 months. It’s been 6 months. I use a cane outdoors and need assist for everything except personal care now. It’s so difficult to go anywhere with the vertigo. Feel like a misfit. I can’t live alone and hoping it gets better. Glad to see there is still hope.

    • I too suffered a cerebellar stroke, in August 2017.
      Fortunately no loss of cognitive functions. Mind and speech are fine.
      I can walk (unaided) but left foot still not in total sync with right foot, and still tire out easily. Fine motor coordination still not 100% in left hand.
      Primary issue is still with balance which hasn’t returned as yet. So frustrating. Hoping some PT will help improve.

  13. I had a small cerebella stroke 2 years ago with a good recovery but after a year began to deteriorate . Now I need to walk with a cane and can only walk about 100 meters before exhaustion. leg weak and uncoordinated. Have really pushed exercise at the gym. Anyone experienced deterioration ?

  14. Joan
    Today I noticed I’m weaker and more balance challenged than usual….is it deterioration or just a bad day? I’m not sure…..I’m feeling a bit discouraged lately as I seem to be making no progress….I should join a recovery group so I might know what post stroke life is typically like….also go back to physical therapy…. (It’s four and s half years since my stroke)

  15. I guess this thread is inactive…hopefully because folks are doing well!!!
    It’s been five years now…I’m better…but challenges continue…weakness..balance issues… Fatigue…and I’m guessing others here had it much worse….I’m just very grateful for what I have in my recovery…there is progress after a stroke and I’ve lived One Day at a Time for many years…. Keep the faith……Blessings to all here!

  16. My husband had a bad cerebellar stroke 2 years ago. He was not supposed to survive. He now is completely devastated. Ataxia, dysarthria, dysphagia. He only wants to sit and watch TV. Is on antidepressants. I do not know how to motivate him. His brain has changed and he literally does not care about one thing. Not only is his life over, mine is too. Any suggestions?

  17. I’ve been active in al anon for many years…long before my stroke of six years ago…one great lesson is to take care of one’s self…not lose yourself in this situation…be strong…be positive…get counseling…join a support group…I found al anona principles very helpful…seek pout all the resources you can find. I still live one day at a time…it does help me. Best wishes to you…and it does get better. Bill

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