My name is Stuart Rakoff. I am 69 years old and live in Reston Virginia. In the summer of 2012 I was diagnosed with ALS – Lou Gehrig’s Disease – a neuromuscular disorder that has already affected my eating, swallowing and walking and which will eventually lead to almost complete paralysis. There is nothing in my family or health history to explain why I have this disease. Nor does the medical community have a solid understanding of the disease process – hence there are no useful treatments to arrest or slow the disease process.

I started writing this blog as a way to help me articulate to myself a strategy for coping with my situation. As I shared these brief writings with family and friends they urged me to share them more widely, so I began publishing them at Reston.Patch.com. I am now also posting them here at stuspeaks.wordpress.com to make it easier for friends to read them.

I hope these writings will stimulate a discussion of the subjects I raise, and encourage your comments.

6 Responses to About

  1. pfstare says:

    I came via The Gratitudenist. I’m humbled by what you are coping with.

  2. Susan McKevitt says:

    Hi Stuart, my name is Sue McKevitt and i went to graduate school (PhD) with your son Simon. Just writing his name brings a smile to my face. He was kind enough to share with me that ALS came to visit you back when it first was known. I have just read some of your blog thanks to Simon sharing the link. I can see the cloth Simon has been cut from. You are a man of large character…and not to be biased praise is clearly also due to your loving wife Roz, Simons mum. My heart goes out to you and the whole family – biological and extended – as you travel this road. We all will pass on at some point. that old adage of the only inevitabilities in life are “death and taxes” seems pretty consistent today. Your gift of compassion to share your journey with so many is wonderful. I turn 69 this month and often ponder how much time i have left. i’m going with the thought of about 30 more good years and a few in decline after that. its all an illusion of course but one that we/I cling to with greed. Your journey is a bit shorter. And the path pretty well known. I offer my heart and prayers that you are able to negotiate it with as much continuing grace as possible. And who knows, miracles do happen. What a dance! Peace to you Stuart. Sincerely, Sue McKevitt, Bradford, NH

  3. Rachel says:

    Hi Stuart,

    My name is Rachel Neugroschel and your sons friend, Jeff Sickles, passed along your blog information. I’m in my second year of graduate school at Temple University and will graduate as a speech-language pathologist. I wanted to thank you for documenting your journey with ALS and your life. I find you to be very brave and witty. I’m learning through your posts and admiring your ability to see the positives in life, because they do still exist. I hope you continue to find happiness where most of us don’t think to look.

    Sincerely, Rachel

  4. Stephen Wehrenberg says:


    As has always been the case, you have seized the opportunity. Thanks so much for sharing this journey (I know … you don’t like that metaphor, but I can’t find a better one). I will be listening.


  5. Hello Stu, I am very sorry about your battle with ALS. I am a son of a person with ALS, and i want to make a difference in his life and others. For this reason, i have started a website called alsfight.com. We want to provide only tools for people affected by ALS. Please visit us.

  6. Daniel Gustafsson says:

    Hi, My name is Daniel and I live in Sweden. My best friend’s mom passed away due to ALS a few years ago (Bless you, Inger). I have recently finished an article about an available natural plant medicine that has been studied the last few years, and it’s possible use for treatment of neurological diseases such as Alzheimer’s, ALS, and Parkinsons. Unfortunately it has been much overlooked until very recently. I have more or less made it my personal quest to inform people I come across, should they be interested. If you would like to read it, send me an email. Have a nice day. Regards / D. Gustafsson

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