Miracles


 hope crutches

David Ben-Gurion said:

“Anyone who doesn’t believe in miracles is not a realist.”

I am a realist.  In 1999 I was 41 years old.  I knew I was too young, too busy, and I felt too good to have M.S.  A realist would know that a couple of bladder infections didn’t mean anything.  They were cured with antibiotics.  I’d always been clumsy, so hitting my shoulder as I turned the corner to walk into another room wasn’t surprising. Gracefulness was not a requirement to be a good mother to three children.  When my internist sent me to have an MRI, I thought she was just trying to help the hospital generate income.  I had been a nurse, so I knew that people with M.S. are in wheelchairs.  I had been a trial attorney.  When I did closing arguments I stood before the jury without assistance of a cane, a walker, and certainly not a wheelchair.

I did have Multiple Sclerosis.  There was no cure. There was no explanation about how or why I had M.S.  Dr. Frohman, my M.S. doctor,  said that my best chance to stay functional was to take Avonex.  Avonex required  an injection every week.  I’d given many patients injections, but jabbing myself with  a 2 ½ inch needle took courage that I wasn’t sure I had.  The visiting nurse encouraged me to show the kids the syringe and needle.  Katie, the 5 year old, was the only one who wanted to try to give an orange a shot.  Anna was 7 ½ years old.  Zach was 10.  They were old enough to be scared of their mother stabbing anyone with a needle.

For almost 10 years most people didn’t even notice that I had a disability.  When I became heat intolerant I adapted.  I brought an ice chest to Katie’s softball games filled with wet, refreshing hand towels.  The other mothers thought I was worried about the kids overheating.  I was really worried about myself.  When I always arrived early to the kids’ events at school, other parents thought I was punctual. Instead I knew I needed additional time to stop and rest on the bench in the hallway.

As time passed my symptoms got worse.  My right foot dragged on the ground.  Taking a shower was so exhausting, that I had to take a nap afterwards.  David would be gone to work before I got out of bed.  I had to limit myself to one errand per day.  Instead of fixing my husband dinner five nights a week, it was often only two or three nights.  Instead of a five course meal, he was happy to get two.  The good news was that we saved a lot of money as it was too difficult to go shopping. The kids had to open jars for me.  David and the kids called to check on me every day when they were on vacation.

I tried different medicines.  For two years I sat in a special room once a month with fellow M.S. patients for an IV infusion of the latest medicine.  I was the lucky one.  One patient was going blind.  One patient walked in with a walker.  One was so afflicted that he couldn’t lift the medicine cup to his mouth. One patient arrived in a wheelchair that supported her head.

It wasn’t until 2010 that I had to use a walker.  It wasn’t that I was embarrassed to use a walker, I simply felt that I should fight to remain independent as long as possible.  The turning point came as a result of falling in gravel after a board meeting at Katie’s school.  It was dark.  Nobody saw the tear in my pants.  My tears weren’t the result of the pain in my knee, but the frustration of realizing that I could no longer pretend that I could walk without assistance.  I had fallen before, but this fall was the result of not only balance issues, but sheer weakness and fatigue.   When my car died, I had to get a car with an automatic hatch back since I was no longer strong enough to lift my walker into a trunk.

Katie was a Junior in High School.  It wasn’t a problem to go to her games even though the gym was on the second floor.  They had an elevator.  I still got to see the other mothers at the games, because they would always sit by me on the floor level bleacher.  When Zach graduated from Yale in 2012, I was so proud.  Yale had special seating for the disabled, so I got a seat near the front.  The next year I returned to Yale for Anna’s graduation.  Now instead of walking the long distance to the courtyard with my walker, I had to use one of their wheelchairs.  I got a great seat with the other grandparents in wheelchairs right in front of the graduation stage.

It was Spring Break for Katie in 2013.  It was such a treat to have her home.  Two days before she left to go back to school, I fell in the middle of the night after walking a few feet towards the bathroom without the walker.  Until that time I thought I could simply hold onto a counter.  The reality is that even adults do stupid things.  I fell and broke my leg.  For the next 6 weeks I had to live in a wheel chair.  We installed handicapped railings in the bathroom.  When my leg healed and the wheelchair was no longer required, I gained a new appreciation for urgency of not becoming dependent on a wheelchair.  Muscles that I had previously used for walking had atrophied and were quite week.

Having experienced the debilitating effects of being dependant on a wheelchair, I decided that there was an urgency in exploring any treatment that might prevent me from becoming wheel-chair bound.  The combination of my research skills and nursing background enabled me to locate and process a vast amount of information from around the globe on new therapies for M.S.  Stem cell therapies seemed the most promising.  Of all physicians in the world, Dr. Karussis’ research seemed the most impressive.  His scientific method was sound.  Not only were his results exciting, but they were also verifiable.  Because he used the patient’s own adult stem cells, it seemed that there was minimal risk with his approach.  Dr. Karussis is the Rock Star of Stem Cell Therapies.  All of the medications given to M.S. patients are prescribed with the hope of simply arresting the progression of the disease.  For many patients, Dr Karussis’ stem cell therapy had been shown to actually reverse some of the devastating effects of M.S.

hadassah the powerof women who do

After my first stem cell infusion I realized immediate benefits, including improvement in speech, enhanced strength in my weakest leg, and improvement in fine motor skills.  However the greatest change was a profound difference in fatigue.  Upon returning from Israel, instead of being jet-lagged I was energized.  The first full day back I took a shower, worked on my blog, arranged flowers, and cooked a big dinner.  I stayed up till midnight watching television as I started to crochet a new blanket.  David was asleep.  He had a bad case of jet lag.

When people see me walk with a walker, they realize I have some type of disability or disease.  They feel sorry for me.  They open doors.  People at parties offer to bring me food.  When I park in a handicapped spot, they aren’t so resentful that they have to park further away.  I have learned to be gracious and simply thank everyone who has tried to help. The truth is that I am lucky.  I’m not dying.  There are so many diseases so much worse than M.S. There are so many M.S. patients that have much worse disabilities than I do.  I have the blessing of great family.  My extended family comes at least twice a year for a bridge weekend.  They are glad to lend a hand when I need physical help, but they cut me no slack if I make a mistake when playing a hand.  My children are still embarrassed by the disco music I love, but they are never embarrassed that their mother walks with a walker.  My first husband and I have shared a sense of humor for 31 years.  If I ever feel down about what I can’t do, he reminds me how to laugh about what I can.  When we were young he reached for my hand to take me out onto the dance floor.  Now he extends his hand to lift me up when I have fallen.   David has accompanied me on every trip to Israel, to make the trip as easy as possible.   When he promised to love me in “sickness and health” I failed to appreciate the importance of that commitment.  I do now.

The stem cell research of Dr. Karussis represents 20 years of hard work and persistence.  His revolutionary new treatment for MS and ALS  is not a miracle, but the reward for years of devotion and dedication to scientific research.  The miracle was that he agreed to allow me to participate in his study when thousands of patients were begging to participate.  When I spent hours volunteering to be a subject in Dr. Frohman’s eye-movement research, I didn’t expect any benefit to me personally.  I simply wanted to do my part in to assist in the advancement of medical knowledge about Multiple Sclerosis.  Imagine my elation when Dr. Karussis identified the potential that my baseline eye movement studies presented a unique opportunity to verify the benefits of his research.  After the stem cell infusions Dr. Frohman repeated the eye movement studies. They had improved.  I am still advancing medical knowledge about Multiple Sclerosis.  The miracle is that it is helping me!

Katie is graduating this year from college and hopes to go to medical school.  She can’t remember a time that her mother didn’t have M.S.  Zach is working on a PhD in organic chemistry at Berkley. He has always approached M.S. in a very scientific way.  Anna is a natural gas trader in Houston.  She came to Dallas to visit for Mother’s Day.  She wasn’t embarrassed to push me in a wheelchair around the Dallas Arboretum because she knew it was too far for me to walk, even with a walker.  The miracle is that I had the energy and desire to go to the Arboretum.

Jonas Salk said:

Hope lies in dreams, in imagination, and in the courage

of those who dare to make dreams into reality.”

I may never walk without assistance, but I am a realist who believes in miracles.  Since I returned from Israel after the last stem cell infusion, I dreamed that I was walking on the beach with David and the kids. The fact that I was walking in the dream didn’t seem remarkable. It didn’t occur to me that I had ever walked with a walker or that I hadn’t walked on a beach since I started having to use a walker 6 years ago.  It was something that I did just like everyone else in the dream.  Hadassah Hospital, Dr. Karussis, and the Women  of Hadassah,…the women who do,…have made my dreams become a reality.  You were creating miracles before I knew I needed one!

  ***************************************************************************

This is Dr. Karussis of Hadassah Medical Organization

dr karussis

Karussis-BIOSKECH-very short cv 2-2015 (1)

These are two recent articles on his amazing stem cell treatment for MS and ALS:

http://www.prnewswire.com/news-releases/jama-neurology-releases-highly-promising-data-from-als-clinical-trial-conducted-by-hadassah-medical-organization-jerusalem-and-brainstorm-cell-therapeutics-300202651.html

 

http://www.hadassah-med.com/about/news/hadassah-conducts-breakthrough-trial-for-treatment-of-multiple-sclerosis

 
In April of 2014 the FDA approved a study at Mass General Boston to replicate the incredible work of Dr. Karussis.
 

http://www.hadassah.org/news-stories/fda-approves-us-clinical.html?referrer=https://www.google.com/

 
The results of that study were just been released on July 19, 2016:  http://www.medscape.com/viewarticle/866354#vp_2 (the article is included below).
 
The study establishes independent proof of the efficacy of the treatment developed by Dr. Karussis.  

 

27 thoughts on “Miracles

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  1. Malia, great story of persistence and knowledge overcoming physical limits. Keep the faith. Our bodies were designed to heal themselves. Stem cells are turning out to be a key link in that process.

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    1. aj,
      You are exactly right! Last night Dr. Karussis was explaining the therapy to a group of people and talking about using the miracle of our bodies to heal themselves! Because our stem cells are designed to heal, we just have to get the right cells to the right place to help the healing process along!

      Like

      1. Maila, You are such a awesome and brave woman! i’m So happy your tx is working!! We must tweet this out because the necessity of stem cell research in the US, is being stifled by people like palin, or should I say who she “used to pretend to be like”.
        This is important research and I am so Very Happy for you and hope you have a continued recovery! This is wonderful news Malia and thank You for sharing!

        Like

  2. Never stop hoping. I will always keep you in my prayers Malia and thank God for his healing gift to you through Dr. Karussis.

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    1. Tiger Wondering WTF,
      Thanks you for your prayers, but I have already had the benefit of this amazing treatment. We need to pray for all patients with MS that this revolutionary treatment helps them!

      Like

  3. My Dear Malia,

    Thank you so much for sharing your story. MS has touched my family too and they also participated in research studies to try to help find answers. Your resilience, postitive attitude and circle of love are clearly helping you to cope.

    A couple of years ago, I read a different approach to looking at MS. It came from a neurosurgeon by the name of Dr. Jack Kruse. I think if you google “Jack Kruse Multiple Sclerosis” you will see his blog post on this very topic. I found it fascinating.

    kind regards,
    Michelle

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    1. Michelle,
      Thanks for telling me about Dr. Kruse. So many people have MS that almost everyone knows someone who has the disease. I’ve had it for 17 years, and thought there would never be a cure or even a treatment during my lifetime. To have positive improvement from this treatment changes my entire outlook on life. I only wish that everyone suffering from the disease could benefit from this amazing discovery!

      Like

    1. grannyj1,
      Sometimes I wonder if I should share such personal details, so I appreciate getting feedback that you enjoyed reading! Thank you!

      Like

  4. Malia – You are a star! Thank you for sharing your journey. Wishing you the very best. Thanks again for all of your hard work. I love your blog. 🙂

    Like

  5. malia,

    heartfelt thanks for sharing your very personal story. it is touching and moving on so many levels and another example of how just one person can make a difference. although a shared battle is experienced by many, each in her own way contributes something which is very individual toward a collective cause.

    your husband and children seem as proud of you as you are of them. for the children, these will be lessons of life learned which they will carry with them forever. hopefully the biggest one will be that one doesn’t walk/run away from someone to whom a commitment has been made when the going gets tough.

    keep fighting the good fight, it is appreciated.

    dave

    Like

    1. dave,
      Thank you so much foryour kind words! You are right when one person in the family has an illness, it affects everyone. It give all of us to gain a sensitivity to all who are afflicted and appreciate every day we have for which we should be thankful!

      Like

  6. Through the 50s and 60s, I watched my friends’s mother succumb to MS when there really was very little in the way of treatment. It gave me a life-long fear of the disease. Now I have several friends with it who are living normal lives. The treatment you are under-going sounds like the treatment a friend of mine received for his auto-immune disease that developed as a result of venom overload from a rattlesnake bite. He was first mistakenly diagnosed as having MS. He has regained the use of his fingers and lost his foot-drop problem. The STEM cell treatment coupled with nutritional help from a licensed naturopathic doctor has given him a new life. I hope your progress is as remarkable as his, Malia.

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    1. WakeUPAmerica,
      Mine has already given me new strength and energy. If I never improve from this level I’ll be lucky. I hope that this becomes widely available to every patient suffering from MS or ALS!

      Like

  7. Thank you for this emotionally gripping and intimate post, Malia! It’s a pleasure learning more about the fine lady behind the blog.

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    1. Wondering,
      Thank you so much! I know most people reading don’t want to hear about this and would rather talk about politics. However, because Dr. Karussis is here for these two days, I felt compelled to write about him!

      Like

  8. I have read your blog many times throughout the past 6 months but never commented until now. I am profoundly moved by your courage, determination, and spirit, particularly after now learning all you have experienced since you were diagnosed with MS. It impresses me even more, understanding the exhaustion MS patients experience after having worked with them in my earlier career in neurophysiology, how hard you worked over a long stretch of time to obtain the staggering amount of documents about the Secret Service under the FOA. I’m blown away! Stem research is so important and I am certainly glad that you are receiving treatment. I’m sending a steady stream of positive, supportive thoughts to you, Malia. Thank-you for your blog and thanks for your perseverance.

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  9. What a compelling post you have generously shared. Thank you, Malia. You are a precious miracle to everyone.

    I am passing this on to those who are battling this baffling affliction. This is a gift for many.

    Like

  10. Malia,

    This is an uplifting story. Thank you for sharing.

    As for politics, this year it’s like Debbie Downer was in charge of the election.

    Like

  11. Sharing your story with us, Malia, was not only a brave thing for you to do, but it also made us realize how complicated life can be for some people.

    How you can keep this blog up with all your fine posts, and make us laugh at your funny videos, with all you have to endure, is amazing.

    God bless…

    Like

    1. Ginger,
      Life is complicated. It’s hard for everyone to find time in our busy lives to care about and spend the time to focus on politics,but each of must take the time if we are to make a difference. We have to have that as our goal, or nothing will ever get better. We must be the change we wish to see in the world!

      Like

  12. Malia, you rock. Truly.

    Today I was acutely, nastily sullen about some ongoing disabling health issues of my own, but your straightforward talk turned my frown upside-down, as the saying goes.

    Long may you wave!

    Like

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