Our trip up North

20 Dec

It has been a whirlwind of activity for us as we visited family and put together our new medical/healing team. For this post I will just share an update on what we learned so far and what we have been doing so those close to us can stay up to date and anyone who might be in a similar situation can learn from the path we took to get here.

It became clear that our hometown neurologist and primary care physician had very little experience with ALS and the team at Mayo, while technically very skilled, had minimal insight into treatment options. So during our travels up north we scheduled a clinic visit with a world renowned ALS team in Boston and came away with a much better understanding of what we are facing and some  options that have shown in clinical trials to slow the progression of ALS. We were also coached on physical and speech therapy options, adaptive technologies and how to talk with our 2 year old son about the changes in Mommy and all the emotions of friends and family.

Probably the biggest challenge we are facing during the holidays is balancing all of the medical appointments, administrative tasks associate with managing ALS (i.e., insurance, taxes, finances, scheduling, and having meetings to share information and make decisions), time with family, healing, rest and carving out space to nurture our relationship so that ALS does not dominate who we are as a couple. Kim has to manage her energy carefully so we are paying particularly close attention to the length of activities and visits, but trying to enjoy both as much as we can when they happen.

Our first visit with the neurologist in Boston confirmed the diagnosis but also added some nuance to the term ALS. We learned that ALS is actually more of an umbrella term that captures many different types of neuromuscular disorders that all basically act the same but may have different triggers – and ultimately may have different treatments. There are several promising clinical trials that recently ended that showed the ability to extend and improve the quality of life for ALS patients.  The most promising drug options include Creatine, Tamoxifen, Ceftriaxone, Dexpramipexole, and NP001.

We were also invited to work with a speech augmentation clinic at Children’s Hospital in Boston that provided us with a special digital recorder so Kim can record phrases and messages. This process will allow Kim to store high quality digital recordings so that they can be accessed later and friends and family can hear her speak with her own voice instead of just a generic digital voice if she should need that someday.

The psychologist we worked with is based out of a cancer institute and specializes in working with terminally ill patients with young children. We are now talking to Jack more openly about ALS and helping him understand why Mommy’s hands and legs don’t work as well as they used to, why she uses a wheelchair or a walker (we call it a wheelie) and why mommy needs to rest her voice. We are not calling it an “ouchie” because we don’t want him to think that when he gets an ouchie it could lead to the same results. We are also helping shape the narrative he is developing for the new normal he is experiencing. It has been incredibly empowering to have access to such a skilled psychological team to help us with these conversations.

Kim is also deeply engaged in a daily practice of physical detoxing, meditation, and spiritual practice. Each day I see her spirit grow stronger. Kim has had a series of visits with healers who are helping her with energy medicine and she has had several very positive experiences that included past life regression, ARCH energy work, reiki, and some unique “special blends.” She is making sure she gets this energy work done at least once a week to keep her personal car battery well charged. I know she will be blogging about these experiences after the holidays. We are also looking forward to doing a retreat at Kripalu soon.

There are more medical visits ahead and we return to Boston soon for a trip to the speech clinic but for this week we are catching our breath and enjoying family, rest and Christmas with Jack.




7 Responses to “Our trip up North”

  1. Dana Felice-Podwol December 20, 2011 at 9:06 pm #

    John and Kim, I’m glad to hear you trip to Boston was fruitful and you are enjoying time with your family! Thanks for posting. You’re in my prayers. I want to say “stay strong” but you already are. 🙂 Happy Holidays! Love, Dana

  2. Sophie December 20, 2011 at 10:29 pm #

    Thank you for the update. You have been in my thoughts, and I am happy to hear that you found some answers and assistance in Boston. Love, Sophie.

  3. Joan Barrows December 21, 2011 at 9:16 am #

    John, Kim and Jack,

    The strenght of love and support of family and friends help so much during times that seem so unfair. Enjoy the good days and keep loving each other.

    Happy Holidays,
    Joan (Rupe) Barrows

  4. Lisa December 21, 2011 at 9:58 am #

    Thank you so much for the update. The amount of strength and love you have for each other, your son, your entire family and all of your friends is amazing and truly inspriring. Merry Christmas! Lisa Doran

  5. Jenny Jackson December 21, 2011 at 8:29 pm #

    Thanks for keeping us all updated on your journey with ALS.
    Please know you have an open invitation to stay with us before or after Kripalu. We live about 1 hr away! Jackson would love to show Jack all of his cars & trucks!
    May your Holiday be merry & bright! Jenny Jackson

  6. Lisa December 23, 2011 at 6:23 pm #

    John and Kim- Thank you for sharing all this. Merry CHRISTmas. We love you.

  7. lisa January 1, 2012 at 5:08 pm #

    Have you ever heard of CCSVI? Seek out The Hubbard Foundation in San Diego, CA. CCSVI has been linked to ALS.

    Good luck!

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