Moyamoya with Support

       Written for In Home Support Services  (IHSS) of Eureka, Ca
       By Linda Arnold   March 25, 09


       Finding words to convey my experiences in the last ten years is difficult. The work of re-building my life, the sense of loss, the struggle to live with brain damage and surgery for Moyamoya disease is enormous. I work to find the best in situations, to advocate for awareness, and to share the joy I have about being alive.
       Support has been a huge factor in unscrambling my physical and mental being.

       In 1999 at age 49 I had a nearly fatal hemorrhagic stroke. That’s when veins break and blood floods the brain. Most of my motor/muscular abilities were wiped out. My vision was severely impaired. I couldn’t communicate because words and thoughts didn’t come easily. I couldn‘t think.  I was in the hospital and rehab for about 3 months as I improved. The doctors and staff at St. Josephs and General Hospitals were of incredible support. The therapists who later came to my home, helped me reacquaint myself with mobility, thinking, speech, life skills and memory.

       Curious as to why I stroked, my husband Jack and I went to both Stanford, Ca and University of California, San Francisco hospitals. Both confirmed  that I have moyamoya disease and recommended surgery. I grew up in the Stanford area and my family still lived there. I felt good about my familiarity with Stanford Hospital, where I was born. In the year 2000 I had the delicate surgery to increase blood flow to my brain.  Having brain surgery was an astounding experience. The support I continue to receive from Dr. Steinberg’s office is paramount to my continued quality of life.  I am thankful for them. For additional information see:  Moyamoya.Stanfordhospital.com.

       Moyamoya Disease ~ It’s not a volcano, a tropical drink or a new dance step -- It’s an extremely rare and progressive disorder that affects the blood supply to the brain. How rare your ask?  It is being diagnosed more frequently but early statistics suggested a rate of 1 in 2,000,000. It is characterized by a progressive narrowing of internal carotid arteries leading  the brain, usually affecting both sides. The cause is unknown but does not seem to relate to atherosclerosis or inflammation of the arteries.  As the vessels narrow, the brain receives less oxygen. Early indicators of moyamoya could be headaches, numbness, and strokes.

       Moyamoya has not been known for very long.  Blood flow augmentation surgeries began in the early 1970’s in Japan.  Here in the United States,  Dr. Steinberg, Head of Neurology at Stanford, was an early pioneer of performing moyamoya surgeries beginning in 1999.  I was among the first 60 people to have the surgery. The frequency of surgeries has increased yearly, indicating that the medical community has become more aware of this disease. As of Nov.2008  Dr. Steinberg had performed 600 surgeries. That’s still not many.

       For myself, in the early 1980‘s, an exam for sinus trouble revealed that I had almost no arteries on my left side - a real half-wit!  That was before much was known about moyamoya in this country.  No one had any idea that I was among the rare ones.

       In the year 2000 I stroked again. Back to square one. I had to re-gain everything.

       Dealing with the effects of the strokes and the delicate management of moyamoya has been a challenge. Due to the two strokes, I consider myself brain damaged. Over the past years I have gained more control over my brain and body, but it hasn’t been easy. Regaining abilities hasn’t been a linear process. For example, what‘s easy and in my memory files one day, is difficult the next. Speech.  I know what I want to say but the words aren’t available (aphasia). I can spend hours trying to access a word, and then, of course, I have to remember it.  I don’t trust my memory. Dealing with new experiences and almost any amount of stimuli has been overwhelming. It took me years before I could even walk into Costco. My sense of self and the way people react to me has changed. It’s an exhausting challenge to be fully aware, conscious, and deliberate about things you used to take for granted. For example: I’m walking but I can’t remember where I’m going. I have to ask, then I have to concentrate on walking again The link between myself and the external world is broken. It’s hard to remember that I’m brain damaged, not stupid. It can be a frustrating and exhausting 24/7 task.  Actually, it’s a lifetime challenge requiring a good deal of humor, compassion and support.


        Today I function fairly ’normally’ (lots of discussion can be had about what  ‘Normal’ is!) with some aphasia and memory challenges.  I am able to drive and deal with daily life, but I tire easily and I sense that my brain just isn’t quite right. I’ve developed tricks to compensate for what I don’t have. Despite these glitches, the additional blood flow has improved my life significantly and I am happy to be alive and who I am.

       Many people have, and do, support me.

       My primary care doctor, who I see monthly, is incredible and works to support me as I become more functional, and to prevent another stroke. Local neurologists, and other medical professionals also support my healing

       Essential support came from my husband Jack. His optimism, love, willingness to delve into this strange new world of sickness and recovery, plus his sense of humor, protected me and paved the way for re-emerging. He saved my life.

       All of my friends and family provided support in immeasurable ways.
       As I gained  coherence, I knew that people were sending love and visiting when my strength, and their circumstances, permitted. In the evenings, friends would gather at my bedside and share daily events and laughter. I sense that knowing I was so well cared for aided in my recovery.

       A few friends had time and energy to offer support on an almost daily basis. They guarded my physical and spiritual well being, they held both Jack and I in their loving hands as I emerged from almost nothingness. Everyone I know supported me completely in their own special way. Being given the gift of friends and family who know me well is another critical support system. I am grateful.

       Agencies like Making Headway, Eureka Adult School Traumatic Brain Injury school, and Easter Seals pool have been essential in my life.

       The advent of   www.moyamoya.com.  in early 2003 brought awareness of the disease to a global level through the internet.  This site has offered resources, support and friendship. I no longer feel so alone and isolated.

       I have survived and grown, with a tremendous amount of support.
       I am thankful. I am grateful.

Hi Linda,
Thank you for posting your letter. You've made such an amazing recovery. It's good of you to share your story. I think that many people who have stroked think that the quality of their life will never get better. You are proof that with  lot of hard work, the passage of time and the support of good people life can be become even better than before.
If not for my strokes and the discovery of my Moyamoya, I would never have met you. My life is much enriched for having met you, Jack, the others who write to this board and those who provided my medical care.
Kim

I have been given the honor of knowing you all and receiving support.

The sharing of some incredible stories of courage, awareness and  love keeps it all going.

Thank you all
Linda.
And thanks for supporting the caregivers too.

elaine~

I remember you from dinner at the the first mm gathering. It was on the outside area. We'd all gathered there. I felt that you may have understood the difficulty I was having in the crowd.  even tho many of the people were/are friends!

As I was incapable of being in crowds comfortably... perhaps Vegas wasn't the best place for me!

Thank you for sharing your story. You've come a long way.
That's wonderful.
I love your sense of humor and fortitude.

Thanks for sharing !

Linda

T

Diane~

Thank you for writing!

Your story/reality is one that, I think, many of us share to varying degrees. That loss of former self, loss of control, and gaining of those 'warts' of this new life is challenging. Humor has been a big factor in my re-building, re-learning, coping.

Being able to talk easily with people is really great!
What a gift.

I honor your 'trip' and thank you for sharing it.
I wish you well,

Linda

Diane, I think your conversation is excellent. And Linda, your humor always tickles the heck out of me. I think we are our own worse critics. It's a pain though when family are impatient and want to rush through a conversation. Plenty of times I've asked mine to yield the floor and give me a moment to express my thoughts. Language is meant to be savored and appreciated after all, not spit out like machine gun bullets. They've been pretty great, but when emotions are high, I usually lose the argument. I used to be the impatient one. I think I'm becoming a better listener than I used to be and that's a good thing. I think the person I am now is wiser, kinder and more forgiving. I too have lost the ability to do mental mathematics easily (not that I was ever all that good at it), but these new character traits - they're OK.
Kim

Diane, Kim, and everyone else who's interested in challenging 'life changes', ~~~

And I don't mean menopause!


I'm so thankful that you all are writing and sharing your stories,
I think short of signing up for ballet classes, we're dong everything we can to live with these challenges.

Having other people understand what it's like is really difficult.

I never was a math whiz but now I can't do multiplication tables (unless it's 1x 3, 1 x 8 etc!) .

I was helping a photographer friend take money at a photo shoot of sports teams. All was well until I needed to make change. and I couldn't do it. i had absolutely no Idea of how to do it. So I got those adaptive bs skills going and said I needed to consult my friend about something else.. and he saved the day. or at least her proper change!

I also have very slow word finding and usage. Most of my friends and family know that I need time. Lots of it.

I've enjoyed being a member (taught some class too) at the Traumatically Brain Injures (TBI) school in Eureka. but, guess what, there's possibly no funding. So now I have now brains and no school!

Actually I'm at the point of being more out-in-the-world -- meaning I can clean house and do more normal stuff!

Thanks for sharing ~~

Stay on your toes!
don't go out for the debate team this year!

Linda