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Moyamoya article (Read 7103 times)
LA
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Moyamoya article
Aug 7th, 2009 at 2:19pm
 



       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. Thatís when veins break and blood floods the 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 couldnĎt 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. 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 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 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 1980Ďs, 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 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.


        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.

       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.
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Linda (LA)
 
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Re: Moyamoya article
Reply #1 - Aug 7th, 2009 at 3:24pm
 
Linda,
I love your article and I love your spirit
Thank you for being such an inspiration
I wish you all the best

Smiley
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Surgeries done at Stanford
Doing Fantastic
Needs physical therapy
 
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Re: Moyamoya article
Reply #2 - Aug 8th, 2009 at 5:24pm
 
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
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Re: Moyamoya article
Reply #3 - Aug 9th, 2009 at 3:10am
 
I so loved reading this article, Linda. †You are testament to strength and determination, and have chosen to live your life in such an inspirational way. †You're definitely one of my heroes!

Big hugs,
Jill
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Re: Moyamoya article
Reply #4 - Aug 9th, 2009 at 2:37pm
 
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.
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Linda (LA)
 
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Re: Moyamoya article
Reply #5 - Aug 9th, 2009 at 7:34pm
 
Hi Linda I'm not sure if we have met yet (I've been to all the Reunions) †My story is a little simalar to yours in the fact that I had my 1st surgery on New Years Eve. 1998--99
When I was 47 I woke up one morning with my left side paralized ( I was a workaholic--Wallpaper Installer & Painter--Sure Rocked my world ) That was Nov. 19, 1997 I spent 2 weeks in the hospital as there mystery patient MRI showed I was blocked on my left side But paralized on my left side--And left controls right and right controls the left............
At first they said I had MS but a spinal tap ruled that out,,,,Then an Angiogram showed it Was A stroke------I was 100 % blocked on the left side and 70 % blocked on the right side and the right side was working hard to supply the left side......
I went to Ohio in January 1998 had a stroke there and spent a week in the hospital there and they told me I had a hole in my heart and it was letting blood clots thru and they wanted to do heart surgery on me in Ohio But I said No because my husban and kids were all in Florida and if I needed surgery I'd have it done there....Well to try and shorten this I had test run in Florida ( No hole in heart ) So my oldest daughter's neighbor is a Dr. and she told me to go to the Mayo Clinic that they would be able to find out what was causing the Strokes.......Went to the Mayo Clinic in Jacksonville where they run SOooooo many tests ( No Hole ) But still wasn't DXed with MM yet,,,,Then on Christmas Eve. I started having numbness in my left leg and arm so I told my husband that if it didn't go away by Christmas Day (Afternoon) I would go to the ER,,,,,,,So after the Grandkids opened there presents I went to the ER However ALL My Records were in Jacksonville and they could see I had several Strokes and one loked new BUT I wanted to go home to be with grandkids (2 lived with me) So they let me go home on the 26th then on the 27th I woke up with my mouth crooked and drowling and sounded like I was Drunk ( And I Don't Drink ) So back to ER and I had told them that the Mayo clinic had said if I kept having Strokes they wanted to do a brain-by-pass,,,,,,So they took me by ambalance to Jacksonvile (From Orlando) and on New Years Eve. 1998 they done my 1st surgery ( what was supose to take 5-5 1/2 hours took 13 hours (that's when they DXed MM) †I was in a coma for 2 weeks and had the brain of a 7 yr. old for a long time,,,,,,( I say I have grown up since then )

There was only 350 people DXed with moyamoya in the United States at that time........

Now that's my Story------And I'm Sticking To It †ha ha

MORRAL TO MY STORY IS DON'T WAIT UNTILL YOU HAVE STROKED SOooooo MANY TIMES THAT YOU ARE DISABILED (Like Me)



Love to All my MM Family

Elaine Calvert
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Elaine
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Re: Moyamoya article
Reply #6 - Aug 22nd, 2009 at 1:13am
 
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
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Linda (LA)
 
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Re: Moyamoya article
Reply #7 - Aug 26th, 2009 at 2:21am
 
Linda! Thanks for sharing! We all can connect in some way to your piece.

For me, I too have some cognitive issues. I have learned ways of coping, adapting and mostly masking and hiding them as I have yet to fully come to terms with the loss of my former self. I have tried to explain to my immediate family that I have significant challenges. Testing has documented that I have a severe 7% working memory....but intellectually, well above average??? It is a paradox I live daily. I drive family and friends crazy with my repetitiveness in a conversation, but that is so that "I" will stay in focus and not forget the points or the subject! I must do tasks on paper, rather than "think mentally" as I cannot keep multiple thoughts or numbers in my head. Yet, I manage all the complex business of our family, including financial planning and tax info etc... I feel many times like I am "pre-alzheimers" with my short comings. My spelling has degraded. I feel ashamed and stupid so many times. Deep down, I know it is not my fault and it is a result of brain damage....but when my own family doesn't accept a lesser version of me....then how can "I" be at ease with my new flaws? I feel tremendous pressure to be and perform as the wife and mother that I was a decade ago (a true super mom) but now I stumble and find myself emotionally anxious (cranky) and apologetic. I am chasing my tail.

I need to see more posts like yours to give me the strength to accept my own warts and see them as just little bumps on the road.

Guess what saved my sanity...is that socially...I am very outgoing. I can easily walk into a room of strangers and make conversation. So I have never felt isolated.....just a fear of being true to myself and saying goodbye to the image of who I was and I'm not anymore.

smiles to ya...Diane





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Hmmm....seems I'm kinda "special" LOL
 
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LA
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Re: Moyamoya article
Reply #8 - Aug 26th, 2009 at 1:33pm
 
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
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Linda (LA)
 
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Re: Moyamoya article
Reply #9 - Aug 26th, 2009 at 7:01pm
 
No, thank YOU Linda!

I love humor....and I rely on it generously to get me through. I only wish my over-achieving, super intelligent, professional family members would cut me some slack. I have a harder time expressing myself or finding my words....but they still want things summarized in a "professional" manner. I get frustrated quicker and if I don't jump in with my thoughts, I will lose them. So, I get reprimanded for being socially inappropriate LOL. I often feel like the town idiot in my own home! I can't ski on the big slope anymore.....I have been relegated to the bunny hill!

Don't get me wrong....my family LOVES me dearly, but they challenge me to be my former self and they have such high expectations of me, that only adds to my stress levels. I really don't know how to get them to lighten up. Hubby is a doctor, 2 sons are in medical school....hmmm....you would think they would understand! My guess is, they don't want mom to be ill....it is their way of coping, by thinking "I'm fixed now" as I have had the surgery! so move on.....

It's all good.....hugs to ya....Diane : )
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Hmmm....seems I'm kinda "special" LOL
 
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Re: Moyamoya article
Reply #10 - Aug 28th, 2009 at 2:02am
 
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
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« Last Edit: Aug 28th, 2009 at 2:25am by KTiller »  
 
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Re: Moyamoya article
Reply #11 - Aug 28th, 2009 at 1:07pm
 
hiya Kim (I miss you!)

I "always" lose the argument! LOL. Guess, I should not be signing up for any debate team!

That "on your toes" fast thinking....I will leave for the more graceful ballerinas! Or in my house, the 400 meter sprinters!
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Hmmm....seems I'm kinda "special" LOL
 
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LA
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Re: Moyamoya article
Reply #12 - Aug 29th, 2009 at 12:45pm
 
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
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Linda (LA)
 
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