Welcome! This blog contains research, information on lifestyle, nutrition, dietary supplements and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the immune paradigm of MS, and continues the 15 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Saturday, March 21, 2015

My brother Jason

Every single time someone casually suggests, in person or via the internet, that I should go back to medical school, I imagine my brother Jason laughing riotously.  Because he actually did go back to medical school, after establishing himself in another career, and I saw, first hand, how hard he worked.  He would say,  "Go for it, Joan!  Ha!!  Good luck with the MCATs!!"

Jason and I share a birthday, March 23rd.  This year, he would be 48,  and I'll turn 53 on Monday.  But without him.   I got to be his big sister for forty wonderful years.  It wasn't long enough.

Jason died in a single vehicle motorcycle accident in September, 2007.  Six months after my husband Jeff was diagnosed with multiple sclerosis.  That was the hardest year of my life.  But I write today to honor the incredible things Jason did during his too short life and to leave a living memorial for my brilliant, loving brother.  Because anything I do to encourage medical research is dedicated to his memory.  And I want my readers to know him.  It also might help explain my passion (obsession?) for medical advances in brain health,  and my desire to educate and help others heal.

In the early nineties, Jason was living in Florida after college, working as a head chef in a very busy kitchen at a successful restaurant.   Jason had a grand mal seizure while standing at the giant commercial stove, probably barking orders at his sous chef.  He fell forward, hit his head and collapsed on the floor.  911 was quickly called, and Jason was taken by ambulance to the nearest hospital.  He was stabilized, but he was in a coma.  His girlfriend Becky called us to let us know, and my family convened from around the country to be with Jason.  I don't remember much from that trip.  It was too hard to see him as he was in the hospital. There were bedside tears, and lots of talking to Jason.  We were all encouraging him to hang in there, but maybe he could wake up or open his eyes?  We told jokes, we rubbed his arms and held his hand.  His girlfriend, who was in nursing school at the time, half-jokingly told him, if you pull through this, we're getting married!  Maybe it was that message, maybe it was the prayers or our presence, but Jason awoke from his coma, groggy and with a headache, after three days.  He didn't remember much of the incident, but he knew two things for sure.  He was marrying Becky, and he was going to go back to school, to learn how to save peoples' lives.  Just as his life had been saved.

Jason soon began as an emergency medical technician.  He was the first call guy, and saw a lot of difficult situations.  Car accidents, gunshot wounds, heart attacks and strokes.  It was a stressful job, and for someone who had just been told he "might" have epilepsy and needed to watch his stress levels, it was wearing.  He eventually decided to go to nursing school,  just like his newlywed bride.  He came out for medical exams and a visit to see us in Los Angeles, and I remember him sitting at my desk, textbooks open, notebook at the ready.  His photographic memory was really helping him get all of the knowledge.  He aced his exams and was a licensed RN in no time.

He worked in hospitals, and ended up finding his calling in nursing homes, where his strong muscular body and gentle loving spirit found their place.  He did the heavy lifting and moving of immobile patients. He would be the one that would sit with the lonely patients.  Those who had been forgotten by family and friends.  He sang to them, made them laugh, touched them and helped them deal with their overwhelming pain and fear.  He saw many people cross over and was the last human touch they would ever feel.   I can only imagine his patients were waiting for him, arms wide open, as he went home.  This image brings me great comfort.

When Jeff was diagnosed with multiple sclerosis, it was Jason I called.  I needed to know what to do, I needed to know what the future would hold for us.  Jason was very candid about the people he had cared for who had MS.  He had made home visits and treated patients with MS in the nursing home.  Jason had moved up in his career and was now working as a nursing home administrator.   He helped us make decisions about Jeff's care, and encouraged me as I began looking into some of the vascular issues I had noted at Jeff's diagnosis.  But he wanted me to be prepared.  He promised me that when things got too tough, he and his new wife Tammie would be there for us.  He even said they would relocate to California, to be Jeff's caregivers, if necessary.  Six months later, my brother Jason was dead.

Still, I know Jason sees Jeff now, and delights in his good health.  We would not need to consider home health care or a nursing home, because Jeff was given the gift of remission and a healing of his brain.  I believe that this was a gift from God.  I know many people rankle at professions of faith, but I'm too old to care anymore.  Heck, I'm turning 53!  I deserve to be able to share my thoughts on faith and prayer.  I understand what "to pray unceasingly" really means.  It was during those tearful, pleading months after Jeff's diagnosis, I was given direction and strength.  I would breathe in help us, breathe out, thank you.  And after losing Jason, I continued on my own, reading everything I could on the history of multiple sclerosis, and on the new, cutting edge research.  I felt a vocation, literally a calling I could hear, to press on, to write what I was learning, and to share how Jeff was doing.  It wasn't always easy going public, but it felt necessary.

Some think that losing a loved one grows easier with time.  But those are people that haven't faced death quite yet.  Those are the platitudes you get on Hallmark cards.  They are intended to be kind and comforting, but they simply aren't true.  You do not stop grieving, you simply learn how to cope.   And the peace you do get, it really does passeth all understanding.  I've heard the death of a loved one best described as losing a limb.  The phantom pain reminds you of what was, before the loss.  You have to just get up and learn how to function again, without the limb.  But you do not forget.

Writing has been part of my healing.  I rejoice in seeing people take in the recommendations of The Endothelial Health Program, or treatment for CCSVI, and finding their health.  Your healing helps my heart heal.  And for those who have not found healing or answers in the vascular connection, we all press on, together.  MS is different for everyone. No one will be left behind.

If you want to give me and Jason the best birthday present ever, please donate your time, energy and money to researchers who desperately need your funding.  They do not have pharmaceutical dollars backing their hard work.  They need all of us to do the heavy lifting.  These volunteer organizations will put your hard earned money to good use.
www.isnvd.org
www.ccsvi.org
http://cnhs.ca
http://www.ccsvi-sm.org

Jason would give you all a gigantic bear hug, as he did to everyone he met.  And he would tell you all to take care of yourselves, because you matter.
We both say thank you,

Joan



Jason, Adam and Joan, siblings in 1969

Joan, Adam and Jason, now with Joan's son in 2001




6 comments:

  1. Very inspirational, Joan. Thank you for your words and actions. Have a great birthday, you spring chicken! (I'll be 54 in May!)

    Love Lori

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    1. thanks, Lori! We are both spring chickens!! xo

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  2. Thanks for sharing, Joan. And thanks for your never ending support for those with MS. Your parents did good!

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    1. thanks, Beth. My parents were both public school teachers who worked hard, volunteered and very loving towards us. They taught us to ask questions, read, learn, pray and help others. I owe them a huge debt of gratitude, xo

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  3. Wow Joan, what a story, I've been out of the loop on many things CCSVI for the past month or so. Just catching up and boy am I glad I did. What a wonderful story of love and triumph! God is so good. He surely is smiling down at you as you continue with Jason's legacy of helping others. You have done so much! God Bless you and Jeff.

    Much love,
    Nicki

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    1. Thanks, sweet Nicki! Good to hear from you. We're all in this together, and I thank God for your encouraging spirit and faithful heart. Still holding on for more healing for more people. Love, Joan

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