November 2019

I am late in my update; typing has become a most arduous activity as I continue on my ALS journey. I compensate for the developing weakness in my arms and hands by holding on to the top of my iPad and typing mostly with my thumbs. It is a slow process but fewer mistakes than voice dictation. My further loss of strength and dexterity has made my technique now a fading compensation. I will be working more with the eye gaze computer (my pupils locking on to letter or link on the screen). It is a work in progress. I now have an android phone and am working with windows based programs after being an Apple/Mac person for many years. It is a very difficult and frustrating transition.

It is now eight years since my initial symptoms appeared in October 2011. One of my deepest fears and anticipated loss was that I would not live long enough to meet my grandchildren. I now have five granddaughters! Christopher and Danniela came for a week long visit in August with Caroline who was six weeks old. Elizabeth is now here with little Madeline who is two and Victoria who is now six weeks old. Her husband Dan drove down with the family dog (big and gentle). Catherine flies in this afternoon. Jeffrey and Laura are coming next week with Sloane and Josephine. What a blessing to see them!

I made a quick trip to Mass General in April to start on an investigational drug. It has showed promise in trials, I have had ALS too long to qualify for most trials, but I was fortunate to obtain the drug through expanded access…. I am hopeful!

Travel was something I always enjoyed and took for granted; flights to Europe, India, Australia, and Argentina were adventures, now a 3-hour flight from Ft. Myers to Boston is a major logistical undertaking. The support equipment (power wheel chair, mechanical lifts, BIPAP ventilation machines) made a short overnight trip exhausting; I was “wiped out” for several days and did not recoup my energy for a week. I think my days of air travel are in the past, another loss to the ALS monster.

If one were to ask for a single word most descriptive of ALS, it would be relentless. Everyday there seems to be a new loss an additional inability and another challenge to find a way to compensate. Some days the loss is barely noticeable and other days it is a game changer. I am losing more strength in my neck, and I fatigue very quickly. I can no longer lift either of my arms onto the armrests of my wheel chair; if an arm slips off the armrest, it is lost to me until someone else lifts it back up. Therefore, I need to be very careful in moving my hands to touch my phone, chair controls or IPad. Swimming was an exercise I enjoyed for several years but is no longer an option due to my declined breathing. I had been relatively stable for two years but now I have faced the increasing need for my BIPAP (non-invasive ventilation, like a very sophisticated CPAP machine) to breathe.

Many of the treatments, interventions and home adaptations have been made possible through advances in technology. The equipment supports my health, independence and activities of daily living. My power wheel chair keeps me mobile, Alexa turns on the lights and the Ring door-bell lets me see who is at the door. My not so high tech assistant, Izzy, opens the door for visitors.

The work of advocating for the ALS patient community continues as a major focus in my life. This year I served on several national committees providing patient perspective on clinical trial design, an FDA guidance document on trial design and patient outreach/education. I was invited to the National ALS registry meeting in Atlanta in July. They offered to fly us up to Atlanta. The trip to Boston enlightened me that a 10-hour drive sitting in my own wheelchair is far more comfortable than three hours in an airline seat and I can bring virtually all my preferred support equipment in our wheelchair converted van. There were two other ALS patients invited and it was an enlightening experience. The ALS Registry will be an essential part of conquering this horrible disease. I hope all my fellow pALS have taken the time to register and do the multiple surveys.

I have just returned from the annual NEALS meeting which is the largest US meeting of people devoting their careers to unraveling the mysteries of ALS and developing effective treatments to control and eventually cure this disease. This consortium consists of ALS clinicians and researchers and is also attended by government and private sector industry representatives. Of the 450 people there, I was one of a few patients invited to attend the full meeting. I left full of hope for future patients who will not hear the diagnosis as a death sentence.

I still do not know what to credit my longevity and stability: the medication, supplements, great care, or my sense of purpose. I just know I only have one chance at this, and I try everything available to me. I am especially grateful I have not lost my voice, which tragically impacts many pALS. Most of my speeches are available at

The Worthington Fore ALS Golf Day occurred for five years and raised $262,000 for research and clinical trials. This community of 800 families has been extraordinary in their personal support and generosity. The event became bigger each year and there were members who couldn’t get into the packed clubhouse for the dinner and evening events. It has grown to an event requiring 4-6 months of planning and preparation, and we are all exhausted. Therefore, this year, we will conduct an online outreach campaign to continue to raise funds essential for research. Words cannot fully convey my gratitude to all who have given so much to this event. Your support has inspired and carried me.

Presently, the one “sure thing” in ALS is the prognosis of a terminal disease. I do fear I am entering the “end stage” of my ALS journey. More is being done to keep me comfortable and functioning. I can say I have a quality of life far better than I anticipated the day my diagnosis was confirmed… and if quality of life is the unqualified love and support of family and friends, I have it all.

(Next Page)

© Madeline Kennedy 2018