July 2017

I have now had ALS officially for five years. As 90% of people with ALS die within 2 to 5 years of diagnosis I consider this quite a victory. I have exceeded my own as well as others’ expectations of my lifespan. This has been cathartic for me. I am still “me” inside this body which has mutated and morphed into something unfamiliar. While body and mind used to be synergistic and relatively seamless, now they are separate and refuse to cooperate with each other. I have needed to adapt. But I am still me.

My breathing (FVC) is below 30%. I use the Trilogy ventilator much more often, but I still manage to function much of my waking time without it. It is comforting to know it is available for me at any time. My speech and swallowing are as yet still unaffected, however, I now have a feeding tube. Due to the need for anesthesia when placing the tube, I was advised to have it inserted before my breathing got any worse. I have had it since November but have yet to use it to consume food. Brian flushes it twice a day to keep it patent. I still manage to go to the pool occasionally for a “walk” and a “float.” My hands are weak and uncooperative but not yet paralyzed. Although all of this is unwanted, it is not unexpected. We all know ALS is a progressive disease. One of the more beneficial things I do for myself is to have a weekly massage. This stimulation reawakens the muscles that I can no longer move and reminds them that they are still part of this body. ALS does not take away our ability to feel touch. I look forward to the newly FDA approved drug, Radicava. It will be available to us next month. While not a cure, it is expected to slow progression. I hope it will not be too late for me.

I have participated in a number of national committees. I was fortunate to be selected to participate on a committee to develop guidelines for the FDA to ease the approval of drugs for ALS. There were over 100 physicians, scientists and pALS (person with ALS) who worked on this project for over a year. The document is now in the hands of the FDA. We hope to streamline access to new drug modalities to assist in improving/maintaining the quality of life of those afflicted with this relentless disease. My next project is to help develop a survey that captures the burden of ALS for pALS and care-givers. I will be working alongside ALSA (ALS Association) and some of their industry partners.

I continue to be active in promoting awareness and advocacy. I have recorded several short talks and posted them on ALS Research Ambassadors’ Facebook page. More speeches can be seen at www.youtube.com/madken1234 (be sure to click “show more” at the bottom.) I have participated for the fourth year in the Sage Colleges ALS Multidisciplinary Conference. This year, there were over 400 in attendance, and once again, it was dedicated to me. What an honor!

In January we had our third annual Worthington Fore ALS fundraiser. As always, all funds raised go to ALS research. This year the money was shared between ALS Therapy Development Institute and the Massachusetts General Hospital Clinical Trials Program. We raised $55,000! Each year we have exceeded our goal. Our fourth Worthington Fore ALS fundraiser will be held on January 27, 2018. We have golf and tennis activities all day, followed by a reception with live and silent auctions.

My life has been enriched by several family events. Early on I expressed my fear that I would not live long enough to meet my grandchildren. I now have two! One was born in January, Sloane, and one in February, my namesake, Madeline. They are such a delight. My oldest son, Christopher, married Danniela in May. They graciously had the wedding here in my community knowing that travel was so difficult for me. What a wonderful celebration we had with family and friends. My other son, Jeffrey, earned an MBA and was promoted to Major in the US Army Reserves. My youngest daughter, Catherine, moved to the DC area and launched a career with the federal government. I am immensely proud of my children and their spouses.

As my physical abilities deteriorate, I have fewer and fewer and fewer responsibilities. Can you imagine having no responsibilities? It can be quite liberating if you take the right attitude. My friends and family are my anchor, always there. Make no mistake, my life still has joy and purpose!!

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© Madeline Kennedy 2018