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About Me

When I started this blog in 2012 I thought my life was over and I said in this ‘About Me’ section that “I used to be a physical therapist.”  Now, I’m back to work as a physical therapist with an ENTIRELY different perspective and treatment methods.

I had a massive stroke at the age of 30.  It’s a lot more common for a young person to have a stroke than anyone thinks.  I could’ve taken a continuing education course about strokes but I decided to have one instead.  I’m getting a much better education this way.

green dress

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42 Comments Post a comment
  1. Anonymous
    May 8 2012

    Thanks for this Blog. My dad had a cerebellar stroke with decpompression and your blog had been helpful! I t has been hard to understand the things he is going through but it has been comforting reading about your experiences as it has helped re-assure my family that things can get better. Thanks again!

    Reply
    • May 8 2012

      Wow. Thank you for that comment. It will get better.

      Reply
  2. Mike Wynne
    May 11 2012

    Hi there.

    Please excuse any errors in my message – my language skills arn’t what they once were. I had a stroke October 2011 (7 months ago now). Although I have no physical issues (except constant pins ‘n needles in my left foot), I lost the ability to read. It’s something else to try to explain that you have a masters degree but can’t read…

    Over the past few months, I’ve re-learned how to read. My issue is, I no longer recognise collections of letters as words. To read a word, I have to make the sounds of the letters in my head, then recognise each word by the way it sound. It’s not the fastest method of reading, but it’s better than nothing and I get by.

    Anyway, I’d like like to say thankyou for your blog. Sometimes I have a little giggle, sometimes it brings about the stuff that really matters. I just read your article titled “What are YOUR Goals in Therapy?” but I completely misread inpatient therapists as “impotent therapists”… well it made me laugh anyway.

    Take care,
    Mike

    Reply
    • May 11 2012

      Thanks Mike….and you’re welcome! Question for you…does it take a lot longer to formulate words like in typing that message or is it just with recognition of words?

      Reply
      • Mike Wynne
        May 11 2012

        For me It’s purely visual… I can type away without even thinking about spelling, but as soon as I come to read back what I’ve written that’s where my problems begin… I found that out two weeks after having my stroke – I had to write a letter for my daughter excusing her from school. I wrote it out just fine but couldn’t read it back at all.

        Like I said, I find a way – sometimes I get it wrong, most of the time I get it right – eventually!

        Reply
      • May 11 2012

        Weird how the brain works, fascinating, but weird! 🙂

        Reply
  3. victoria
    Jun 4 2012

    Just wanted to let you konw that this is an amazing site and I know so many people are going to be helped by you and your story. You’ve come so far – be proud of this and know that SO many people love you and are with you EVERY step of the way.

    Reply
    • Jun 4 2012

      Thanks Vic, see ya soon!!!!!!!!!

      Reply
  4. Jul 10 2012

    Amy. Thanks for commenting on my blog. You are free to use any of the articles I have written. If you are interested as a PT and stroke survivor to have a demonstration on the Tutor manual therapy system with motion feedback then I am available over skype. Please email me on alan@meditouch.co.il to arrange.

    Reply
  5. Anonymous
    Aug 2 2012

    I am an OT who specialized in stroke rehab who continued my education by having a stroke. My stroke that hit the pons which is the bridge to the cerebellum. See my blog at homeafterstroke.blogspot.com. Rebecca Dutton

    Reply
  6. Sep 1 2012

    Amy, Please don’t take any of my rantings personally. I do have a question, can you point me to required textbooks for PTs that cover stroke rehab? Between you and Rebecca now all we need is a stroke impaired blogging neurologist.
    Dean

    Reply
    • Sep 1 2012

      Dean, rant away. Don’t worry about offending me. In school we didn’t have any books that were specifically for stroke rehab, we had books on neurology and neurologic based things. I’ll do some research and give you some good titles.

      Reply
      • Sep 1 2012

        Actually you don’t just want good books to read, you want the names of books I actually used in school, am I right?

        Reply
        • Sep 1 2012

          Good books that now would be used in curriculum. Actually both, I’m trying to see how much we’ve improved.

          Reply
          • Sep 1 2012

            OK, I’ll send you a list

            Reply
  7. Amy,
    I think you should bold, underline and make this line extra big: “It’s a lot more common for a young person to have a stroke than anyone thinks.” This is a true comment. I wish there was more information for these stroke survivors. Your blog seems a good place to start. Thanks for sharing your words of wisdom with us all.

    Tara

    Reply
    • Sep 6 2012

      Thanks Tara! I hope it helps people!

      Reply
  8. Oct 20 2012

    Hi Amy;
    I’m just another PT who, yes, also had a cerebellar stroke. My blog is at know-stroke.org and I also have been trying for many years now to get the message out about the young faces of stroke. Thanks for your recent post on this important subject. I am curious if you know about our non profit group, The PFO Research Foundation pforesearch.org, we are currently asking patients with PFO’s to take our 2012 survey. I read in your blog you had a possible PFO connection with your stroke as well. Take care and keep up the good writing:) Thanks!

    Reply
    • Oct 20 2012

      Another PT who had a cerebellar stroke? OMG! I’ll take the survey, definitely.

      Reply
  9. Jaen Wirefly
    Nov 11 2012

    I never knew someone could get a stroke at 30. How did that happen?

    Reply
    • Nov 11 2012

      I was told by doctors that they don’t know. One doctor said “sometimes 30 year olds just have strokes.”

      Reply
  10. John T
    Nov 24 2012

    Amy, nice blog. I had a cerebellar stroke in June of 2008. My takeaway is that I continued to get better after the first year, something that’s different for everyone. Good luck to you and God bless yinz.

    Reply
    • Nov 24 2012

      Thank you! Yinz? Where are you from John?

      Reply
  11. brittany
    Dec 12 2012

    I cannot tell you how great I think your blog is. I found itbecause I was lookin for info on how to get my quad stronger. I pedal and pedal but I don’t think that’s doing any good. My stroke happened 18 mos ago. I did have inpatient rehab for two mos.last month my pt said I plateaued and discharged me. This blog is my ray. Of sunshine

    Reply
    • Dec 12 2012

      Brittany, thank you SO much. There is no such thing as a plateau when it comes to recovering from a stroke, it just gets to a point where measurable progress is really, really slow and your PT probably had no choice but to discharge you. But I think the word ‘plateau’ is very discouraging and should never be used. Your brain rewires forever, recovery is never over. If you want ideas to strengthen the quads read this https://mycerebellarstrokerecovery.com/2012/09/19/knee-extensors-quadriceps/

      Reply
  12. Dec 19 2012

    Your blog is great, you are great.

    Reply
  13. Apr 1 2013

    Thanks so much for sharing your experiences. I have a young friend in her early 20s who just suffered a stroke, and it is hard to imagine what she is going through, so it’s hard for me to know how to be the best kind of friend to her. It helps to read your perspective.

    I also have a 6-year-old with Down’s and his physical therapist is AWESOME, but I don’t feel like I personally connect with her at all – never know what she’s thinking. So it’s just great reading a physical therapists’ take.

    Thanks again,
    Alyson

    Reply
    • Apr 2 2013

      Aww you’re welcome!!!!

      Reply
  14. Apr 7 2013

    Thanks for the blog. I suffered a cerebellar stroke 6 weeks ago, and just starting to come to terms with the randomness of it all.,fingers crossed for our continued recovery.

    Sean.

    Reply
    • Apr 7 2013

      You’re welcome, good luck!!

      Reply
  15. Sep 7 2013

    Wow–at 30! Rock on sista!

    Reply
  16. hermansjungle
    Oct 16 2013

    Hi Amy
    I have just starting to do some research on Strokes. I had a Cerebellar Hemorrhage when I was 10. It left me with tremors in my right leg and arm. Over the past 40 years i have tried many different medications but nothing has helped. I did not allow this to take control of my life. I started riding horses,got a job working in a fire tower and later working for a telecommunication company, There is very little that I cannot do. I have been asked so many times why I am so nervous. Things definitely get worse for me when i get upset. Even though i have managed to do most things in life , it is the small things that bother me the most. Buffets,not being able to hold a coffee and sandwich at the same time.Shaking hands(mine doesn’t always meet the other persons hand..Anyway, enough rambling. After 40 years it is nice to hear from others with the same issues.

    Reply
    • Oct 16 2013

      Hi! 🙂 It’s very nice to hear that you’ve done all that stuff.

      Reply
      • Nov 2 2013

        Hi, Michael from Australia, another C’Stroke Survivor, actually had a mini stroke, didn’t quite get it, so had another a week later, and then one whilst in the CTscan just to freak out the operator, Dec 2011. Was told 1st ‘bye’, then ‘bedbound’, then ‘wheelchair bound’, now ‘framebound’. My balance isn’t, and a fair bit knocked around physically, brain is ok tho. Have got into multiple exercising, ie BJJ(mat grappling,), Pilates, Treadmill & Forced, same with Rower, Weights (Free & Machine, Armchair Lawnbowls, Balance, Bike, and anything else I can do. Always have challenged myself, now am 53, was training/competing till my strokes with young crowd. Looking for real suggestions, I do like this site, some good info,
        Michael.

        Reply
        • Nov 2 2013

          Thanks so much Michael, I’m glad you like it.

          Reply
          • WENDY
            Apr 2 2019

            AMY YOU’RE BLOG IS AWESOME I CAME ACROSS IT BY ACCIDENT. IHAD A MIDDLE CERRREBELLAR ARTERY STROKE IN MAY 2017 AND I HAVE SERCHED AND SERCHED TO FIND INFO TO HELP WITH MY RECOVERY. I AM TRYING TO IMPROVE MY GAIT. DUE TO WEAKNESS IN MY LEFT HSMSTRING ACCORDING TO MY PT I AM UNABLE TO LIFT I LEG, I REALLY DON’T KNOW WHERE TO GO FROM HERE. YOUSUGGESTED BUYING A TREADMILL AND WALKING EVERYDAY, I WOILDLOVE TO DO THIS BUT FEEL I HAVE PERFECTED THE WRONG WAY OF WALKING.

            Reply
            • Apr 3 2019

              Thank you!!!

              You haven’t perfected the wrong way of walking. Weakness in the hamstring wouldn’t disallow you to lift your leg. Wrong muscle maybe?

              Reply
  17. Greg
    Apr 20 2014

    Great site, I found it while doing my own research on ventricular drains, specifically after effects, recovery, that kind of stuff. I had an IVH in November 2013 and spent 35 days in the hospital, most of it in the ICU, most of it in an extremely altered state of consciousness, both from the drugs and the stroke, the blood flowing into my brain and damage from herniation. I have no complaints, my stroke was definitely a wake up call. I am 46 and I look at it as a dividing line between how I used to be and how I strive to be now. I feel dizzy a lot of the time, my eyesight is altered, not necessarily bad, just different and my hearing has been altered as well. I can move around well, no paralysis, just weakness from being in bed for too long. I had a ventillator and then a tracheostomy after they could not keep me on it any longer. More than anything I hated the PEG tube and the way it felt, I dreaded the day they jerked it out but it was immediate blessed relief.
    I am trying to get back to work, I get so tired though.
    Do you know anything about KEPPRA? I have been on it for seizure prophalaxis since my stroke. I have not had a seizure, ever, but they said I was at an increased risk because of all of the blood getting into my brain tissue. Next month will make 6 months post bleed, I have to get another scan and then maybe they will take me off of it, I don’t know. Just wondering what you have heard about it. I do not like the way it makes me feel, but I certainly do not want to start having seizures on top of everything else.
    One day at a time, and yes I repeat everything to myself over and over. This is far better than the alternative!

    Reply
    • Apr 20 2014

      Hi Greg! Welcome. 🙂 I don’t know anything about KEPPRA. I luckily never had seizures and was never told I was at a higher risk of them.

      Reply
  18. Hi, my wife suffered a cerebral infarction 35 days ago, with inflammation on the third day. Spend 10 days in coma and wake up 3 weeks ago. Know she is starting with rehabilitation.
    i think your blog is a good way to know about this kind of accidents and how to fix part of the problems

    Reply
    • Mar 12 2018

      I hope it helps!

      Reply

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