Jun 28
avm42 , Posted on SUPPORT NETWORK Blog

AVM in 1999

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At age 13 I experienced a grand mal seizure. I was scared to death. Seizures were soon a common occurrence in my life for the next 34 years. Eventually during one hospital stay it was discovered that I had an arteriovenous malformation (AVM).

Most AVMs can be surgically removed, but mine was inoperable. Because of that I decided not to tell anyone. Of course, my parents knew, but I refused to tell even my closest friends for fear I would be looked upon as someone special. After all I was only 13. My logic was that I was living on borrowed time so why not live life to its fullest? I planned to live into my 30s.

One day 10 years ago, at age 47, I woke up with a terrible headache. I thought it was stress from a new job. I knew I was in trouble when my speech slurred and my right arm went numb. At the ER, my legs seemed to drop out from under me. 

I remember I was surprised when my wife Peggy, who is a nurse, told the ER nurse that I was having a stroke. That night the doctors prepared Peggy for the worst: that I might not live.

But I did live. Over several months I had three operations, two to cauterize the AVM and another to remove it completely. Then there were two months in the hospital, countless days in intensive care and five years in rehab. I had a three-word vocabulary: yes, no and peekles. In addition, I had short-term memory loss, poor reasoning skills and my entire right side was nonfunctional.

Rehab was where I found out what motivation means. Each day was treated with a renewed determination. I spent countless hours over 18 months doing outpatient therapy. When a therapist would say five more, I would do 10. My mantras were “It’s possible” and “I think I can.”

The first thing I wanted to do was walk. I think everybody wants that because it makes you feel less handicapped, but actually walking is highly overrated. The ground is a scary place when you fall from six feet. Speech is where I should have concentrated more. I remember all the times I walked to dinner, and then couldn’t carry on a conversation. I wouldn’t be as far along as I am if not for the years of therapy and the incredible therapists. They were ruthless, and I loved them for it.

Life has changed. Today I can walk with the use of an ankle foot orthotic (AFO), speak with a little added effort, and my reasoning skills have returned. However, numbers are still difficult.

I fell downstairs and broke my leg. We moved from our two-story house immediately! I fell another time and ripped the rotator cuff on my good arm, like I said, walking is highly overrated.

I regained my driver’s license and had my car outfitted with a left-foot gas pedal. I’m pretty much independent except for things needing two hands, like those darn cereal box liners and cutting steaks. I’ve learned patience.

Life has simplified. Where I used to travel internationally, Peggy and I enjoy going to the coast for a weekend. There was initially a fallout of friends, but now we’re busy every weekend. I enjoy walking our golden retriever in the park and I love our cat. I go to a personal trainer once a week and I try to work out five times a week. I still see a speech therapist three or four times a year.

I have started a Web site for stroke survivors, stroketherapy.info It is dedicated to Peggy, who has taught me what motivation means and given me the gift of patience. She taught me how to laugh again. I am truly blessed to be her husband.

I got a service dog after a three-year wait. Donald and Aretha are Lab mix, and he and she have made a huge difference in my life. They help me with grocery shopping and the telephone and even helps me take off my sweater. My self-confidence is way up.

Where I used to work 60 hours a week, I now volunteer in the acute rehab units at Stanford and Mills Hospitals in California, where I am affectionately referred to as Trouble, as in “Here comes Trouble”. Yes, life has changed and despite the occasional frustrations, I’m enjoying what I consider to be a second chance!

Editors Note: For more information on Canine Companions for Independence go to cci.org. This information is provided as a resource to our readers. The tips, products or resources listed have not been reviewed or endorsed by the American Stroke Association.



1 Comment
  • AHAASAKatie

    HI! The AHA Communications team would like to talk with your stroke survivor story. If you are interested in this, please email me at SupportNetwork@heart.org . Thanks Katie

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