Living in the Solution: My Life with Progressive MS
Today is Walk MS, and for the first time since my diagnosis, I am not there. While I am not one to feel sorry for myself, this stings. I miss being among the sea of impassioned orange warriors. I miss the tears that fall as cheers accompany me through the mammoth balloon arch. I miss the compelling camaraderie found through shared hopes to one day find a cure. I miss being able to walk the course.
I miss me.
Through the capitulation of living with progressive MS, I have learned it is OK and quite normal to simultaneously hold two opposing emotions. I do miss the woman I was pre-diagnosis, yet I love whom I have become as a direct result of that loss.
It is my belief that profound growth cannot occur without the fermentation of profound loss. Extreme loss both levels and leaves us raw. It is in these beautifully exposed states that we begin anew. We wipe our tears, toss our fears, and open our eyes. A new life begins when we cull purpose from that which once brought us to our knees.
I have found myself on my knees myriad times over these past eight years. While each setback differs in gravity, the inexorable pull brings me face-to-face with a new possibility. This is not because of my strength; rather, I refuse to accept the alternative, as inertia is certain death.
Therefore, as I slowly make my way upward, certitude prevails. The knowledge that I am living in the solution prevails over any disappointment. I am incredibly humbled to have more than $2,000 in donations toward one day finding a cure for multiple sclerosis. I am confident that one day a cure will be discovered, if not in my lifetime, then for my nephew’s and grandchildren’s lifetimes.
A loss is powerful, yet discovery is tenfold. The realization of why we are born is second only to our actual birthday. I am blessed with that knowledge. I am here to embody hope where I find despair. I am here to find conviction amid doubt. I am here to raise awareness in place of ignorance. I am here to rise and fight decline.
Mostly, I am here to share, impart, and help others build their own greatness. It lies in each of us and we were born to manifest its magnificence.
For who are you not to be?
***
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Richard Leakey
I have a progressive form of MS. I was diagnosed with a mild, benign form of MS in 2008. My walking was mildly affected in those days and today, I can hardly walk at all. My foot drop is poor and my gait is rubbish. I really struggle to make 100 metres and my recovery time gets longer. I'm still trying to find out (from me ) whether pushing ones body to do 110 metres instead of 100 metres is good or bad? At the moment, when recovery is so slow and difficult and you feel so rubbish perhaps for days? push is bad! Who do I ask over here? This is England, not America where you have a lot of help.
Jenn Powell
Thank you for writing, Richard,
I’m so sorry you’re expert such profound loss of function. I find it most important to go slow and do only what feels safe and comfortable.
Do you have a patient advocate you can speak with? I am unfamiliar with the Healthcare system in England but truly wish you well.
Jenn
Dolores Johnson
I said I would write back after taking high dose Biotin for 10 months (see below). I am still declining terribly. I'm getting to the point where I don't even want to leave the house anymore. If something changes I will get in touch.
Keith Layton
Average
Jenn Powell
Okay
Kaylene
I have progressive MS. Can anyone give me any feedback on diet? I have read that omitting all meat & diary is helpful. Does anyone have experience with this??
Prayers for all.
Jenn Powell
Thanks for writing, Kaylene,
I do believe diet can help with any autoimmune disease including MS. In my experience a diet free of dairy & sugar helps reduce inflammation but this is only my personal experience.
I encourage you to speak with your physician to see what they suggest.
Kindly,
Jenn
Elise Hietikko
A clinical trial comparing the most popular two MS diets in the U.S. finished collecting data in 2017. Results coming in 2018. You can read more at: https://www.thepaleomom.com/dr-terry-wahls/.
I personally have found the Wahls diet (level 2) very helpful for reversing my foot drop and brain fog. I have PPMS. Read more about Wahls at: https://terrywahls.com.
I agree that the biggest dietary change that helps is drastically reducing sugar.
Dolores Johnson
Richard, I am where you are in terms of lack of mobility.I feel I am almost paralyzed because my two legs have become like uncooperative tree trunks attached to my waist. But it has taken me much longer than you to get where I am. I was diagnosed with relapsing remitting MS 19 years ago. That disease, while treatable, turned into secondary progressive about 5 years ago. Secondary progressive has no treatment. I am currently taking high potency doses of the supplement Biotin (which you can order online without a prescription). I have learned from reading this column that positive results don't kick in until after nine months. Next week will be my nine-month anniversary. I have been going downhill steadily for the last five years. I hope to see some kind of improvement soon. I hope to come back to this column in about a month to tell you how I am doing.
Jenn Powell
Thank you for writing Dolores,
I’m so very sorry things have been so consistently challenging. I, too, have Secondary Progressive and am declining. I take powdered Biotin as it is more concentrated than the pill form.it is thought to help with myelin repair.
You are not alone.
Jenn
Ian Franks
First, from a professional point-of-view and a former editor with MS News Today, I want to compliment you, Jenny, on a great, well-written column.
Secondly, I have SPMS and can identify totally with what you had to say.
Finally, Richard Leakey, I am British and my wife is American, and we wonder where you get the idea that in America "you have a lot of help". Lisa used to work in healthcare in the US and her granddad had MS. She tells me that help for people with MS in the States is not any better than in the UK.