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This page is for your comments, and anything you would like to share.....your own journey with stroke, feedback about my journey, resources that have helped you, and any thing else positive that you feel might help a victim of a stroke or a caregiver of a stroke victim. type out what you want to say, in an email and send it to me. Please note - some comments might be edited for length, but know that i appreciate all comments, good and bad. You can reach me by clicking the button, Contact Me, on any of the pages. We look forward to hearing from you.

Evan

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Like you I suffered an ischemic stroke in the brain stem called a Pons ischemic stroke or a morbid stroke in 2006. I too am paralyzed on one side (right side, which was my primary side) and inability to talk clearly. I too am a one-handed typist (with my stupid hand). Though I’m getting better thru practice and patience. Anyway, I first want to applaud your efforts, as a member of various support groups I find that most people are so wrapped up in there own problems, they forget about others in the same boat. You didn’t so kudos to you. Secondly I would like to recommend a book for you viewers called “Steps to Follow.”, it was recommended by my old therapist and has many exercises you can try at home. I say he’s my old therapist because he is strictly a pt and ever since my time in hospital, that concentrated on my left or strong side. I am now seeing a neuro-therapist who concentrates on strengthening my right or weak side this is radically different from before and may help you, or some of your web site viewers. Anyway it couldn’t hurt. Keep up good work.

Kindest Regards, Jim Ellington

At age 18 I had a "non-residual sub-arachnoid hemorrhage" in 1953, leaving me with paralysis on the right side. I was 3 months pregnant with my daughter, who is now 54, is a second grade teacher and has 2 sons of her own. I started computing (with one hand) in 1980 and love it!!! Keep up the good work and enjoy your life.

Alice M.

I just finished your journal, and saw that you had posted my earlier comments and I realized I left some things out. First I am 43 years old not the youngest patient I’ve read about or the oldest who survived though most are hemorrhagic stroke patients. Only around 10-20% survives to tell of it, so the rest is gravy. Like you, this is not our first crisis ( you losing your leg below knee) First, when I went for an MRI for a work related injury, I found out I had lymphoma and had to endure both chemo and radiation ( I’ve been clean for over 6 years, so I beat the odds). 2 weeks later, I went through botched disk surgery on my neck (C-5-C-6) The pain went from sporadic to constant. In fact it got so bad, I had a heart attack, so it’s been an eventful 10 years to say the least.

The real reason I’m writing is over the last year I’ve done some research you or one of you readers might be interested in. My research has ranged all over, one good place for disabled aids is: http://www.abledata.com/abledata.cfm?pageid=19337 or http://www.sammonspreston.com. Both are excellent sites for disabled supplies. Other research I’ve done is a C-PAP (Continuous Positive Air Pressure) machine for speech therapy. Originally designed for sleep apnea 10 years ago there was research done on hyper-nasality (which I have along with paralyzed soft palate and one vocal fold) the idea is to lift palate, like weight lifting to make it stronger. My original speech therapist started me on program, the idea is to build up to three time of 20 minutes each. If you want to research, the web site is: http://www.news.uiuc.edu/gentips/00/04speechtip.html. There is also questionable research on using hyper-barricks in stroke treatment. At 20k for questionable results (we’re self pay for the last two years) we didn’t opt for this, supposedly by oxygen infusion of the cells you revive idling neurons which were shocked into a kind of stasis by the stroke. Lastly, my old physical therapy used a muscle stimulator/tens machine which delivered a shock to reestablish nerve pathways. I have used tens for years as a drug free way of relieving the pain in my neck and shoulder. You can look at: http://www.sportsci.org/encyc/drafts/Electrical_muscle_stim.doc.

I hope this either helps you or someone. If I hear of anything I’ll let you know. All the best on a speedy recovery.

Best Regards, Jim Ellington

Hi Evan,

"I read your new journal entries and know what you mean, it’s either laugh or cry, and it feels the same to me. For a long time (about 8 mo.), I coped with no drugs, But with anti- depressants and a mood leveler, thing are much better, with the help “of Daddy’s little helper”. My wife’s complaint is that I get all the good drugs and there’s none for her (just joking). I’ve said it before I would gladly stop all the drugs if I had my self control back. It’s like all the fears I’ve ever conquered, are back with a vengeance. There is a disease named for this called Emotional Liability there is information at: http://www.americanheart.org/presenter.jhtml?identifier=4761

You can try looking away and counting to ten, or just taking deep breathes. There are times especially when I’m tired that I’ll start to get emotional despite the meds. I’m scared to try anything stronger, for fear it’ll affect my ability to think.

I got your email, and I was so sorry that you lost your eye to cancer. Did you lose your leg below the knee for same reason? You’ve been through as much as I have. They say that what doesn’t kill you only makes you stronger; if that’s true we ought to give Superman a run for his money!

I too load washer and do the dishes. Even though my wife says I don’t have to prove that I belong here. I like helping, not only does it make me feel useful, it has also never bothered me or my manhood to change a diaper, wash either clothes or dishes.

You said you can use a vibrator sander. Try this, go to target, and buy the yoga block (order two so to be even.) Put one on your left hand tape one to your right. After stretching by leaning forward (keeping your hands at your sides). Push down with your right arm and try to lift your butt off mattress, then switch and use your left side. As part f your arm exercises, you can push against your wife’s arm. This will help build your triceps’, that’s what I’ve been doing at therapy and practicing at home. I’ve also been free-standing, and trying to hold an ironing board at an angle with my right hand, then while standing push the ironing board away, then pull it back to you. Then I practice putting weight on my right leg then step forward and back again. It feels unnatural, and I’m afraid of falling, so don’t worry if you’re scared. If you’re not ready, you can take a partially deflated ball (like a soccer ball) and put under your weak leg and practice pulling the ball to you and pushing it away.

That’s all I have, hope it helps and you can print if you want."

Best Regards, Jim Ellington

Hi my name is Brenda, My son Michael had a brain stem stroke on June 20, 2005, at the age of 19. He was at a work camp with his Church group painting houses for low income families, when he sat down to wait on the lunch bus to pick him up, he said a small devotional and said a prayer, the minute he said amen he fell back and started seizing really bad, It took doctors almost 2 weeks before they realized he had a stroke, his brain was having seizers so they had to put him in a induced coma to stop the seizing,

Michael has no health problems and all test came back normal, The doctors have all told me it should not of happened to such a healthy child. Michael spent 3 weeks at Ruby Memorial Hospital in Morgantown WV, then went to Health South Rehab In Morgantown where he spent 6mths, When Michael went to Health South he could only blink his eyes, It has been almost 3 yrs now and he has full control of left side, his speech is coming back slowly but it is still hard to understand him at times, he also is still unable to walk which balance is a real problem, his right side is very weak however he is still able to use it, his main problem is still short term memory, he struggles with that on a daily basics,

Before his stroke, Michael was a 4.0 college student attending Ohio Valley University where he had planned to become a Youth Minister, This has been very hard on me as his mother, and boy have I questioned my faith a lot, How this could happen to such a good kid, As time passes I realize things happen for a reason and I know God takes all bad and makes good come for it,

It's really scary to know he had this stroke and they were unable to find the cause for it, They checked him for everything a person can imagine, genetics and all, When he was released from the hospital I took him to Cleveland Clinic where he saw a stroke specialist who ran a few test that Ruby was unable and still they found nothing that could have caused it, It is hard for me to except that such a horrible stroke could happen to such a young healthy child.

Doctors keep telling me that in time he will continue to improve but over the last year I haven't seen much improvement and believe now this is probably where he will always be, our insurance cut him off and he receives SSI but his medical card only pays for 20 visits of rehab per year, and pays for NO speech, I have searched for clinical trails for help but never nothing for brain stem, Doctors say with rehab he will continue to improve, It makes me sick that our insurance and his Medical card wont pay for any rehab for him, If you know of any resources out there please let me know. God Bless you in your Recovery, Your web site is very nice, and yes you are welcome to share Michael's story. You will be in our prayers,

Brenda ( Bren1122@aol.com )

(The following message is from Jim, a frequent contributor, and a very useful resource. We had been lamenting the fact that we would like to contribute more to lawn maintenance if we could, but would need a modified riding mower. This is what he found out.)

Hi Evan,

Thanks for your reply. I found a joy-stick controlled lawn mower which can be adapted for the left hand/leg. It would probably be like operating a power-chair. They’re expensive (around five grand) and it might be more than you want to spend, (it was for me.), but the mower is located @ http://www.countryclipper.com/and the sales rep is Michael Gholson Michael.Gholson@MARRBROS.COM . So far that and a zero turn unit from John Deere with controls located on left side at Lowes for about 3K after tax; were the only one’s I could find.

Best Regards, Jim Ellington

Dear Evan,

I'm so glad you kept a journal because you probably would never have been

able to recollect in retrospect the miseries and frustration which

thankfully dim over time. I read somewhere "kind friends tell you time is

the only doctor and it's true, but he is a slow worker and no anesthetist at

all."

As poignant and heartbreaking as your experience has been, I read courage,

strength, hope and love throughout your heroic road to recovery. It's

obvious that keeping the journal has been therapeutic for you in many ways,

but it will be of incalculable help to others in your same situation. So

you must keep writing.

Louise F.

Evan,

I went to the website and read it all. what an inspiration to anyone, just not a stroke victim. It's hard to really understand what you went through, but you explained it well.

When you described about being so fearful, and the staff communications, I was thinking about how I may have been in the past, and hope I was always kind.. It really did make me think, and will make me try even harder. You are so lucky to have Mary.. you guys have a special bond, rare to find. I am glad you are making progress, and will continue to pray for your best recovery.

Kathy M.

Evan,

I think you have found your next career. Your journal should be published. It is a wonderful tool that would let non-stroke victims visualize what a stroke can be like. I found it helpful in helping me to understand a from the perspective of the person who has suffered a stroke. I could see how this journal could help the caregivers and family members.

Lois M

Dear Evan:

Great to hear from you, and to know that your spirit is not broken. Your chronological account is literature and I hope that you will make it available to a larger audience including healthcare workers and professionals. I read it, quite frankly, with fascination quite apart from interest because of my acquaintance with the patient. It is rare, if ever, that a patient under care, particular one with what we hope - oh, I feel certain - is a temporary communications handicap, will give such a thorough and lucid account of his experience. It is also very informative to those who might be struck in the future and those of their loved ones that will care for them. That means many of us who are in the last decades of our lives. So, thanks you for that. Keep on recording!

Willi S.

Dear Evan,

Your diary of recovery is a work of art. Thank you for sharing. I anticipate that other stroke patients will find your writing very therapeutic and hopeful. You have traveled down a long road, begun to recover your independence, and have been able to laugh along the way. Keep up this momentum and may all go well.

Betty R.

Hello Evan,

I can’t begin to tell you how amazing your journal was to read. So many times, I alternated between tears and then smiles reading your account. Especially touching was the love and devotion or your “best” friend, Mary. How very special a person she is came through very well. And, the progress you have made on the road to recovery, despite some setbacks, is truly inspiring. Of particular interest was when I read about the special lift chair. It was formerly used by our neighbor and dear friend. You are in our thoughts and prayers. We will continue to read the journal. God bless you and keep you,

Dorothy P.
Pat M.

Evan ,

Read with much interest your matter-of-fact journal and identified with you

in many of the hardships associated with a hospital stay since I too have

had a remarkable sequence of incredible and disappointing stories. One

difference: I am well over 20 years older than you, and that counts a whole

lot when it comes to recovery.

I am writing this message with the intention to extend empathy, support and

above all encouragement. What else can I possibly offer to you who has his

daily travail already well defined? Perhaps this: nobody, but nobody knows

the power of the mind! There are ample references on the web pointing to the

exciting fact that one can heal himself (and others) with the power of the

mind. It worked for me last year. I was struggling with a difficult

pericarditis when suddenly I simply made the decision that I would be OK.

And I was.

Does it sound wacky? Perhaps. Perhaps not. Yet, has it not been said that

faith (choice >> belief) as big as a grain of mustard could move mountains?

Everything happens for a purpose, always a good one (in the end). I shall

keep you in my prayers. Best wishes for your complete recovery.

Ettore

Evan--

I know all that you wrote will be read eagerly by anyone touched by that

very unpleasant, unexpected interruption on their lives--that stroke----

it's a wonderful task you set yourself--sharing with so many people all the

things they might wonder about, but wouldn't know how, or who, to ask----

hope you know that you and yours are in the minds of lots of folks around

here--and we're all sending good vibes, as you improve, day by day, and

week by week--

Mary M.

Very well written. I feel like I'm there with you. I can sense the helplessness, the exhaustion, the fear, the joy and the victories! You could easily turn your journal into a book. Your a brave and loving couple.

Jim M

Wow. I just started it, but it's a winner. That's my first impression. I glanced at the resources and it might be nice to integrate these discoveries into the main journal. Also, for the reader who doesn't know you, it would be nice to have more description of your surroundings, the PT rehab room which you did characterize, but it's worth a few more descriptive sentences and I want to know more about what the therapists look like. Plus your home is wonderfully unusual and the shop would be fun to "see." Those are my comments. Thanks for journal sharing.

Susan M.

Dear Evan,

You write VERY well! I've read every word. You express your

thoughts in a way that I'm sure would help anybody recovering from a

stroke. You must all start thinking how you can make it

available to others.

Anne N.

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