Mostly, I am like other people. I am a busy wife, mother and community member. I’ve championed a learning garden at my children’s school, participated in local politics and nurtured personal research projects about food, nutrition and health. And, I want what most people want: simply put, I want to be successful living my version of living well. What’s different about me is that I want to do this while living with a fatal neurodegenerative disease with no known cure: ALS.

Living with ALS-or any crisis of health-is enormously challenging for all involved. For my husband and I there are financial ramifications, parenting considerations and role changes. For my children there are social hurdles related to looking different because their mother is in a mobility scooter, lots of requests for assistance from their parents and a need to mature a little faster. And friends and family struggle with how to interact with me and how to be helpful. And the list goes on. DSCN1674

And I am one of the lucky ones. I have a strong, hero-of-a-husband who’s ability to create solutions to my ever-increasing physical limitations seems to know no bounds. I have several communities of friends and family just waiting to be asked to help. And, I have access to what is known as the best standard of care for my disease.

As grateful as I am for my good fortune, I can’t help but also give voice to what has been hard about my challenge especially because some of what has been hard comes from some unexpected places. Medical providers are disease management oriented as opposed to health oriented. Similarly, available social service providers have a one-size-fits-all mindset at a time when patient-centered care would seem more appropriate. Even some of the medical research literature speaks of ALS as “devastating” and “horrible”. And, although it would be hard to argue that these words do not reflect some truth about having such a big disease, they do not get me any closer to figuring out how to live with it.

And these unhelpful manifestations of mindset are not particular to those dealing with ALS. For the past several years I have had the privilege of engaging with people with a variety of complicated health problems including cancer, Sjögren’s syndrome and Stevens-Johnson syndrome to name a few. They are also searching for ways to live well with their health issues and often hit a lot of dead ends before (if ever) finding the right supports. Health providers who listen to them until they understand well enough to make suggestions that are relevant seem to be in short supply.

Living well with a health challenge-no matter how big or small-necessitates thinking outside the neat, disease management oriented ICD-9 box and it takes time and curiosity and a whole lot of up-to-date information.  I may not be able to change the systems that many experience as falling short, but I can pull together what I have learned and make it available to the millions of others like me so they can move on with living well with their particular set of challenges.


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4 Responses to “About”

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WOW! Thanks for sharing, your story is incredible. Your insight on this is issue is fascinating, I cant wait to read more. Im sorry you have ALS, but hopefully by sharing your story you can reach others and make an impact!

Janice, I’m so glad I was able to read your story and hear how you are working to live well dispute this disease. I am so sorry that you have this challenge.

Hello, I found your site searching for bone broth and ALS. I was excited to find that you are trying a similar approach to what I am doing for a relative with ALS. I am wondering how you are doing with the Wahls diet. I would love to hear from you. We are seeing some good things happening but we just started less than a month ago.

christine, first, I’m so sorry that you and your family are facing such a big disease and I wish you every success in your efforts. I’m thrilled when I hear that others are exploring nutrition as a mode of healing. I truly believe that the building blocks to healthy cells lie in what we consume. to answer your question I will start with the hard part: I am still progressing. I was diagnosed 1.5 yrs ago when all I had was drop foot and now I cannot stand or transfer from my chair to scooter on my own, among other things. having said that, I do continue to consume a particularly healthful diet (I’m sipping on a cup of bone broth as I write this). and here’s why:

1. during this 1.5 years of healthful eating (and supplements) I have experienced a # of health changes that tell me there are new healthy cell changes at work in my body. specifically, the bone spurs and pain associated with my osteoarthritis are completely gone; my teeth a bit whiter, a couple of decades old pits are filling in and they stopped cracking; I raised my pH levels from a seriously bad alkaline state to a consistently normal pH state; my eye health has seriously improved including much better night vision; I sleep better now than I have in 2 decades; my energy level seriously increased; I feel less moody and no longer experience pms; I exposed and eliminated some allergies or sensitivities to sugar, wheat and milk; I eliminated a # of skin issues.

2. even though I have progressed in spite of these efforts, what I don’t know is how much worse it might be if I were not taking all my healthful actions. I have an amazing quality of life that I am able to enjoy partly because of the level of health I am maintaining. no need to be itchy, moody, and achy on top of the ALS.

3. I believe in the science that says all the cells in the body turn over within approximately 8 years. wahl’s writes about it, as does deepak chopra and others. wahls points out that neuro cells take the longest (7-10 yrs). I don’t know what is going to happen, but I do know that I can choose to give my cells a fighting chance.

I’m happy to chat more and wish your family every success.

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