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Moyamoya - A Story to Share by Linda Arnold (Read 12810 times)
LA
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Moyamoya - A Story to Share by Linda Arnold
Jan 5th, 2010 at 12:44am
 

Moyamoya Disease
A Story to Share
Linda Arnold
January 2010

Finding words to convey my experiences is difficult. The work of re-building my life, the sense of loss, the struggle to live with brain damage plus 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.

In 1999 at age 49 I had a nearly fatal hemorrhagic stroke. Tiny veins broke and caused an enormous flood in my brain.  Most of my motor/muscular abilities were wiped out. My vision was severely impaired. I couldnít communicate because words and thoughts didnít come easily. I couldn't think.  I was in the hospital and rehab for about 3 months as I improved.  Later, therapists came to my home, to help 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 University and University of California, San Francisco hospitals. Both confirmed  that I have Moyamoya disease and recommended surgery. We chose Stanford as that's where I grew up and my mom was still there.
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. Steinbergís office is paramount to my continued quality of life.  I am thankful for them. For additional information see:  Moyamoya.Stanfordhospital.com.

Moyamoya Disease ~ Itís not a volcano, a tropical drink or a new dance step -- Itís 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 hemispheres. 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. For years before the initial stroke I experienced exhaustion and mental and physical malaise. Things just weren't right but no one knew why.

Moyamoya has not been known for very long.  Blood flow augmentation surgeries began in the early 1970ís 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. Thatís still not many.
For myself, in the early 1980's, an exam for sinus trouble revealed that I had almost no arteries on the left side of my brain - 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 medical 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 hasnít been easy. Regaining abilities hasnít been a linear process. For example, whatĎs easy and in my memory files one day, is difficult the next. Speech.  I know what I want to say but the words arenít available (aphasia). I can spend hours trying to access a word, and then, of course, I have to remember it.  I donít 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. Itís an exhausting challenge to be fully aware, conscious, and deliberate about things you used to take for granted. For example: Iím walking but I canít remember where Iím going. I have to ask, then I have to concentrate on walking again The link between myself and the external world is broken. Itís hard to remember that Iím brain damaged, not stupid. It can be a frustrating and exhausting 24/7 task. Actually, itís a lifetime challenge requiring a good deal of humor, compassion and support.

In addition to my family and friends I received local support from two sources, Making Headway and Eureka Adult School.

The Eureka Adult School offers a school for Traumatic Brain Injury (TBI) survivors where I was able to begin re-building, and adjusting to, my new way of life. The school provided education and camaraderie with others who are also living vastly different lives than anyone ever anticipated. New friends and a new coping skills!

Making Headway in Eureka, Ca provides services to people with Traumatic Brain Injured. Having the opportunity to receive counseling that pertained to my particular difficulties was wonderful. I also was privileged to teach a class on the 'Varieties of Religious Experiences',  and a weekly class at the Adult School on 'Values' sponsored by Making Headway.

In 2009 Making Headway enabled a friend and I to co-lead a small group of people in 'Stories To Share'. It is the beginning of a series that is intended to give people with brain injury the opportunity to experience telling and sharing their stories. Hopefully this could be a cathartic and a sharing experience. The other goal is to mass many stories and to create a book to increase public awareness.  If you're reading this account, then a major part of our goal has been reached!

I have written many personal accounts of  Moyamoya disease. The following was specifically written for the ĎStories to Shareí class.

Like the Wicked Witch of the Wherever, I melted down, down, down, down, into a puddle.

My brainís been put through a blender.
Swirling around in the brain-in-blender mix are large gelatinous chunks with actual abilities to think, feel, sense, and whatever else Iíve forgotten.
ĎForgottení rings a bell ! But Iím not sure which bell.
Anyway, Iím too tired to think about it. Too tired to think, talk, or move.  Brain tired, with itís physical exhaustion component, is intense, consuming and I never know when itís going to end.  Maybe never. And please donít call in a shrink who will say Iím not optimistic enough! How can anyone know that the concept of making plans got crunched in the blender. How can I plan when I never know how Iím going to feelÖor how long Iíll be so utterly uncertain, so decimated.
Toss out the Day Planner, right after the self confidence, or any understanding of how your life works. Or doesnít work.
Christmas comes on Dec 25th  Hope Iím not too tired for the festivities or enjoy the actual meaning of the holiday.  Anyway I havenít been up to joining the crowds, much less, actually purchasing gifts. It takes a lot of Ďbeing solid/cohesiveí to deal with daily lifeÖmuch less an annoyingly jolly dude with a red nose. No to mention that there are far to many people shopping. Iím overwhelmed by the stimuli Iím bombarded with.
Itís a tidy precursor to exhaustion. Not the ďIĎll grab a quick napĒ tired. Itís total mind/body all-day-to-recover and maybe even a week, tired. It takes alertness, speech, logic, cohesion, and energy down the drain. The blender whirls. My brain doesnít work and speech gets lost in the mix.

It took me four trials to make a small  purchase at the dreaded/dreadful BayShore Mall. Since I had gotten my drivers license approved, I decided to drive.
On the first trip to the Mall I simply drove there. Didnít even park. ďGotta go home now, this is too overwhelming.Ē  Had to rest for a couple days before doing anything, much less going shopping.
On the next trip I actually drove, parked and walked into the Mall. Retreat! Proud that I was getting closer! Once again I rested for a couple days.
Behind the wheel again and actually got into the store. It was overwhelming so, guess what,  I left.
Itís been well over a week since the ĎGoing-to-Get-a-Blouseí escapade began. Stimuli, exhaustion, rest, try again. That dopey summer blouse cost a fortune in gas! All I did that week was directed toward making that purchase. Was a physical and emotional effort. But, it was progress. Now, I can negotiate the world a tiny bit better. I did it!

Regarding speech, trying to think and memory! Theyíre all difficult and they all come, and go, with zero predictability. Being tired is an influence on speech, and thinking. This is the tiredness that takes eons to get over. The one that keeps my wardrobe down to one new blouse. Memory sidles into the exhaustion heap too. This goop in the blender has lots of ingredients. It whirls the brain.

Aphasia is forgetting words. It too is unpredictable as to which words will escape me and when.  I have learned to Ďchill outí and not force myself. Otherwise I could strangle myself on word finding.
For example, I want to say ďaccompanyĒ but my brain went pure white with nothing nothing nothing there. Frozen white nothing. Finally I pull out of the Arctic freeze enough to say that the word is similar to  Ďmore than oneí which was all I could scoop up.  So itís final jeopardy time and everyoneís yelling out possibilities. ďNope, itís not two or togetherĒ. Then it gets really interesting, ĎOne of my favorite songs has that word in the title, itís by, oh oh  just minute while I try to recall his nameÖ.í  and I canít. So weĎre off on another tangent. ďSomeday Lady Youíll Accompany MeĒ is also lost, as is the intended word, which vanished hours ago, and by then Iím too tired to care. It can be a real conversation stopper

Get the soup ladle out, dip into that word access mush in the brain. Itís frustrating. I want to be perfectly clear, what I experience is Not A Senior Moment.  It might look like one to someoneís still patiently (or not) waiting for me to finish a sentence finally. But itís isnít. I almost appreciate someone trying  to emphasize.
Immediately after the strokes I could barely speak. I remember trying to tell a doctor where my pain was but there were no words. Getting to a quasi-verbal level took time, effort and lots of frustration. The other frustration and/or interesting phenomena now is that  I lose are different words every day.  My husband knows that when I ask 'what plant is in the driveway' he knows I've misplaced the word for redwood tree. Tomorrow it will be 'salad dressing'. If I'm tired the entire dictionary froths in the brain blender. I've learned to almost accept these glitches, to ask people to give me time to think and speak, to ask for assistance, and to move on.
Writing the above piece for the "Stories to Share' group  was an excellent way to continue realizing my strengths and to share with others.

Today I function fairly ínormallyí (lots of discussion can be had about what  ĎNormalí 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 isnít quite right. Iíve developed tricks to compensate for what I donít have. Despite these glitches, the additional blood flow has improved my life significantly and I am happy to be alive and who I am.

Thanks too:
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.

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


Friends and family near and far provided support in immeasurable ways.
In the evenings, friends would gather at my hospital bedside and share daily events and laughter. I sense that knowing I was so well cared for aided in my recovery.
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.

Thanks to my friends with TBI who showed me how it is to continue with astounding perseverance and humor.

The advent of   www.moyamoya.com. ; in early 2003 brought awareness of the disease to a global level through the internet. This site offers resources and support. Sharing the experience of living with this rare disease has given me a network of strong friendships with people who can and do understand the nuances of life with Moyamoya.
I no longer feel so alone and isolated.

My plans include to continue gaining capabilities and to continue learning, to educate others, and to offer support for people entering a new way of life.
I have survived, grown, and learned much about Moyamoya.
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Linda (LA)
 
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yunnanababy
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Re: Moyamoya - A Story to Share by Linda Arnold
Reply #1 - Jan 7th, 2010 at 11:13am
 
Thank you for sharing your story, Linda.  What an inspiration you are!  I hope many people have the opportunity to read what you've written.

Best regards,

Jennifer
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Mom to an 9.5 y/o ballerina/guitar player with MMD & an 11.5 y/o gymnast/cross country runner/swimmer!
www.caringbridge.org/visit/rubymaejingli
WWW 1422039771&ref=profile  
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LA
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Re: Moyamoya - A Story to Share by Linda Arnold
Reply #2 - Jan 7th, 2010 at 9:55pm
 
Thank you!

It's always inspirational for me to hear others peoples stories.

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Linda (LA)
 
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Entesar S.
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Re: Moyamoya - A Story to Share by Linda Arnold
Reply #3 - Jan 10th, 2010 at 4:46am
 
Dear Linda,

Thank you for sharing your amazing story.

You are a great example for patience and Courage.

We all (Me, Wadha, Mohammed and Joad) wish you

all the best
Take care,
Entesar
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Surgeries done at Stanford
Doing Fantastic
Needs physical therapy
 
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LA
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Re: Moyamoya - A Story to Share by Linda Arnold
Reply #4 - Jan 10th, 2010 at 11:30am
 
Thank you so much.
I hope Joad is doing well...hope you all are well.

Meeting you all has been precious.

Lots of LOVE and thanks,

Linda
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Linda (LA)
 
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Re: Moyamoya - A Story to Share by Linda Arnold
Reply #5 - Jan 10th, 2010 at 4:19pm
 
Linda,
Your story is very informative.  We are in the process of scheduling surgery for our 8 year old daughter at Boston, Childrens Hospital in the next few months.  I am scared.  I don't know what will happen,  will she still have to be limited in physical activity years after the surgery?  What kind of life will she have as a woman!  She has not had a stroke, she gets headaches and tires easily.  She also had focal seizures as baby/toddler but no more.  Any advice on what we should be doing as parents to prepare her?
Sincerely,
Tammy
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LA
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Re: Moyamoya - A Story to Share by Linda Arnold
Reply #6 - Jan 13th, 2010 at 12:21pm
 
Tammy~
I'd put this line of questions on the main communication section here so more people can see and respond to your very valid concerns. I gather that most youngsters who are in similar conditions as you describe your daughter, do well after surgery.

I wish you and your family the best,

Linda
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Linda (LA)
 
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