July 2015

It has now been three years since my diagnosis, and I am approaching four years of symptoms. The ALS monster advances. I now live my life in my power wheel chair; walking even a few steps is no longer an option. My husband has retired early to be my caretaker. We have moved from our family home of 33 years and into what was to be our vacation home in a warmer climate. The snow and ice of a north eastern winter is no friend when one cannot walk. In the process of the move and putting our home on the market, we parted with many items we once considered valuable to us. Memories remain.

We have renovated our bathroom to be handicapped accessible, and we have purchased a van with a ramp so that I can go places in my 350 lb custom PWC. ALS is an expensive disease.

The strength in my hands and arms is fading. I first noticed this beginning last summer. Now I cannot bathe myself nor dress myself. It is sometimes difficult to feed myself, but I have not required feeding by others just yet. I have not yet decided if I will go out in public when I need to be fed by others or just stay hidden at home. I have been completely open about so much of my illness, but that just seems humiliating.

I can no longer apply makeup, but I have found a magical accommodation for that. I now have permanent makeup tattooed onto my eyebrows, eyelids and lips! This is fantastic for a woman and helps me maintain my self-image and my self esteem. I am grateful for your generosity, Nadine’s Permanent Makeup.

My wonderful support group here in Florida helped me put on a fundraiser last January to raise money for research. We had great success and raised over $34,000! Hooray! One highlight of the day was captured live by a local TV news crew. While showing off my adaptive golf cart, I sank a 78 ft putt!! Take a look below. The clip went viral, and was posted on CNN.com, Golf.com, MSN.com and numerous others. I shared the same page as Tiger Woods and Phil Mickelson! It was a hoot. We will have the fundraiser again this January, but, alas, my arms are too weak to golf. Our fundraiser website is http://community.als.net/WorthingtonForeALS

ln April, I received an extraordinary gift from a very generous woman; a service dog. Izzy was selected for me and rescued in Spain. She was transported to the US with a doggie passport and trained to do tasks for me. She will pick up items I drop and give them back to me. She can close cupboards, and we are working on opening a door. She follows me from room to room and goes everywhere with me, four airplane flights already, and she sits in my lap. She is an awesome companion.

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We had a major life event in May when our daughter was married. It was a beautiful and emotional event, one that I had always looked forward to. I danced at our son’s wedding four years ago; This time there was no dancing for me. I was escorted down the aisle in my power wheel chair. Though it was not quite as I had envisioned it, I was thrilled to be able to be there, to witness it and be part of it. I have managed to live longer than so many of my ALS friends.

I attended National Advocacy Day and lobbied our elected officials in DC for the third consecutive year. That is really the only place I get to meet many others with ALS. I am so inspired by my fellow pALS.

Finally, in May, I was awarded an honorary doctorate for my advocacy work from Russell Sage College. I feel both humbled and honored by the award. I will treasure this award for the rest of my days. My life is still full, and I am still fighting.

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Madeline Kennedy 2016