Apr 21
Bertie15
Bertie15 , Posted on SUPPORT NETWORK Blog

Looking for similar stroke survivors

Looking for others in a similar condition.  Over 8 1/2 years ago I had my first hemorrhagic stroke.  I had just turned 41 the week before. More than 4 years later I had another stroke that required hospitalization. 
I've had over 3 years of daily rehab and many follow up visits since and more to come.  I am in a wheelchair and have little to no feeling on my left side.  I have ataxia.  I am deaf in right ear with partial hearing in the left.  And I hear constant ringing, noises or music.  I have to keep the right eye taped shut or I see double.  I can no longer move my eyes side to side and my vision worsened.  I also have limited use of my left arm and hand and my speech is slurred.  I lost a lot of fine motor skills so I can't write.

I'm looking for support from others who have experienced similar circumstances. 
6 Comments
  • brent
    brent,
    Hello. I had an ischemic stroke four years ago. I was ejected in a rollover accident and tore an artery in my neck. Despite multiple X-rays of my head and neck in the emergency room tear in my artery went undetected. Blood flow eventually clotted around the tear and plugged circulation to my brain. I was in a coma on life support for 2 months. I am blind in my left eye now and cannot move the left side of my body very well. I was left-handed so I can't write much anymore I'm trying to learn to write with my right hand but that is very difficult. My equilibrium got affected terribly so I cannot walk very much anymore because my balance is gone. It's been 4 years since that happened. The little bit of improvement I had after the stroke took place within the first eight or nine months. I try to do a little bit of therapy and exercises on my own every day. I would have to say realistically that it does not do much good or provide much benefit other than just to make myself feel good that I accomplished something. Even though I do manage to get by I have moments over realization every so often of the horror that my life has become and it sends me into serious panic attacks. Even though I get very sad and depressed about certain things I try to be thankful for the fact that my little girl who is 6 years old now will still get to grow up having a father. Even though the saying is very cliche I have found it is very true as well in that you never know how strong you can be until strong is the only option you have. So try to stay strong and remember that there are other people fighting the same fight as you. You are not alone. Take care of your self.
  • lhtownsend6
    lhtownsend6,
    I had a hemorrhagic stroke 4 years ago at 52.... perfectly health before that. No symptoms befor the brain anyerisum and 2 strokes. For the last 4 years I have been in rehabilitation therapy. My vision is not great in one eye, my upper body is fine but my balance is not great and my ankles do not work so I have foot drop. I am working to walk with a cane. I have gone from a wheelchair to walker..... now using two canes most of the time but can walk with one cane. All I can say is I've had lots of wonderful people praying for me. God is good..... I just keep praying and trusting in him to get better. That's what keeps my spirits up. I will definitely include you in my prayers.
  • steedo
    steedo,
    Hi Bertie, Stroke Bloke from down under in Aus. I have thought long and hard about my response to you. I realise i am in no position to give my normal motivational blurb that I normally sprout forth with on this site!? Like about the grieving process that we stroke vicrtims go through for the loss of the person we used to be-Anger, denial, guilt , depression but the spirit and soul is still alive unless we let it die-; I would recommend that you buy, borrow or steal a copy of THE Brains Way of Healing by Doidge - it may give hope. I cant begin to Know how hard it is for you- I was lucky with perseverance and hard work my brain responded and I have recovered beyond my initial expectations. the daily advances were so small I couldn't measure the differences but I kept going and over time I was able to look back and go-'hell I couldn't straighten that finger 2 months ago' or heck my balance is better. As Doidge points out there is no guarantee that things will return but they definitely wont if you don't continue. I do notice that all though having a great recovery I have bad days and bouts of exhaustion for seemingly no reason. As the other posters say stay strong the only way is up! It is Normal to feel crap about it all and knowing that doesn't make it better but the BIG thing is seeing the value in what is possible- love from and of those around including kids..
  • AHAASAKatie
    AHAASAKatie,
    Thank you so much for sharing with us! Please take some time to look around the Support Network and engage in conversations! So excited that you are here. Best Katie
  • Sanjeev
    Sanjeev,
    Did both your strokes affect the left side of your body. Where are you from.? I had a left MCA which affected my right side . Though I amable to walk without a stick now my speech has been badly affected. Therapies at TIRR help but they also have a strength unlimited programwhich you pay out of your pocket. You can get fitness trainer to do exercises with you .
  • BillCV
    BillCV,

    I am a caregiver to a stroke victim.  I am responding to your comment about tinnitus (ringing in the ears.)  I have this problem too and I also hear ringing, noises and music.  The music is most disturbing to me.  I just discovered that I can control what I hear to some extent.  I started out humming ‘Taps’ and, sure enough, the music I heard was ‘Taps’. Then, I tried listening to some favorite tunes on the phone.  And, sure enough, I would hear the last tune played after turning off the phone. I also found that I can control the speed of the tune… by humming the notes a little slower than the tune is playing.  Give it a try.

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