A New Year’s Update

7 Jan

As we start a new year I had a request to provide an update on some of the changes in our world since Kim’s diagnosis. I originally sent this as a letter to family and Kim asked that I post it here.

Our Treatment Plan
Kim continues to take a cocktail of drugs and supplements designed to slow the degeneration of her neural-muscular connections, improve speech and control affective symptoms, support muscle strength and detoxification to keep her immune system working as optimally as we can. One drug we have removed from the cocktail is Dexpramipexole, which despite strong early promise, has failed its phase 3 efficacy trial and will be discontinued. This is the liquid drug in the red bottles for those who have visited and helped prep Kim’s drugs – she calls it the million dollar cocktail.
Kim continues to follow a keto regimen that is largely gluten free. We have learned that hydration is important and to that end Kim is constantly drinking electrolyte rich beverages, her kale juice, and we use copious amounts of lotion to keep her skin hydrated throughout the day. Becoming dehydrated leads to very painful muscle twitching and rigidity so this is a constant battle worth staying on top of.
Kim is in the pool three times a week and in the gym another day during the week for stretching and weight bearing exercise. When people ask me what we do, of all our treatment options, that has the most immediate positive reaction I always say being in the water.
Kim’s spirits remain high in the face of great challenges. She reads spiritually based books and articles on her iPad and has thrown herself into her art projects. We are looking to convert part of the garage into an accessible art studio for her. I would like to find more opportunities to help her enjoy kirtan music and meditation.
Our Caregiving Plan
We are hiring help for 25 hours a week (more if other coverage falls through in any given week), expanded our opportunities for friends and neighbors to help through a site called Lotsa Helping Hands, and benefitted from the help of Dan and Lenore who have temporarily relocated to an apartment in town. Prior to these changes Barb and I were covering all of this on our own and at the end of the year we all agreed it was a nearly impossible pace to maintain so we hope when she returns these new supports will help greatly. Increasingly a “3rd shift” has emerged where Kim needs my help throughout the night so that  presents a new challenge and pressure on my sleep that we have not solved yet.
Our Finances
Kim and I did a quick accounting of how much we spent in new ALS related expenses in the past year and we counted just over $113,000 that was not covered by insurance or grant funding. The bigger ticket items include the ADA van, ADA remodel to the house, doctor appointments, lab tests, equipment, meds, professional caregiving, and various therapies. Of that, almost half was covered by donations through the crane fundraiser and other generous gifts. While some of the big ticket items are behind us (the diagnosis, the van, the refit of the house), our caregiving costs will rise to $30,000 in the coming year so our ALS related out of pocket expenses will easily top $50,000.
Our Outlook
We are wrestling with many new emotions as we have found “acceptance” to be a fleeting feeling – since the new normal changes almost weekly. We are tired, and this is hard, but with that said we are also very happy quite often. Jack is a true joy and makes us bust out laughing daily as he finds his voice. We continue to get better at protecting our alone time together -we still have weekly dates and I can honestly say that we laugh and love with a grateful heart more often than we lament what has been lost. Thank you all for your support and love and I hope this is a blissfully happy new year for all of you.
John

 

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4 Responses to “A New Year’s Update”

  1. Nancy Johnson January 7, 2013 at 9:35 am #

    Kim and family, I wish I’d known about your remodel needs. My husband is VERY involved with the North West Arkansas Home Builders Association. They have done some fabulous work with people and their needs in the past, at no cost to the family. If there is anything else that needs to be done along those lines in the future, please let me know.

    Tell your dad that my husband, Lance has not forgotten about him. He has state HBA installation and meetings this weekend. He hopes to be in contact with Dan as soon as that is over.

    Kim, I have no special skills other than being a wife, mom and home maker. But, I LOVE to do laundry. Yes, I do. If I can be of help, please let me do that. Just contact me. Also, I know having Jack with you as much as possible is important. Did you know there is a child’s day at the Crystal Bridges Museum and I think it’s once a week? My two adult sons will never give me grandchildren so I’d love to help out in that line as well. Or, if you go and you drive all the way to the end of the parking area, it’s a covered entrance with wheel chair acsess.

    Sign me, Nancy from the pool!

  2. Nancy Johnson January 7, 2013 at 9:37 am #

    I’m so used to spell check that I didn’t proof what I wrote before I sent my note above!

  3. jeanelle January 8, 2013 at 4:43 pm #

    You are all an inspiration to me. I love you so much. Thank you so much for the update…and Allie and I have an idea for kirtan… will FB message you both in a minute 🙂

  4. Candace Waltz January 9, 2013 at 2:59 pm #

    Dear Kim and John,
    I am Jon and Shana Waltz’s mom and I have followed your story over the last months. Please know that I keep track of your news regularly and care very much about your latest updates. I hope you will add me to your blog list. We live in California so we can’t bring you groceries, but know we are with you in spirit. I loved your Christmas card!

    Candy Waltz

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