Bob Ives

I served from 1961 to 1963 and had no expectation of ALS or VA involvement. In 2014 I was diagnosed with ALS at Northwestern Memorial and became involved with Les Turner ALS Foundation where my advocate told me of the VA support of veterans with ALS. I now am deeply involved with the VA clinic at Hines VA hospital. They conduct clinics with…[Read more]

I believe there are many variables involved in this discussion including the pALS progression, the availability of quality clinics, the pALS other medical resources, the preferences of the pALS, etc.  In my case (8 years since diagnosis) I participate in two clinics (one civilian, one VA) 3-4 times a year and find them of great value.  In a…[Read more]

Hi Amanda,  Thanks for today’s post as well as your many others … they make a difference!  It’s helpful for all to be part of a community which openly shares and communicates … which is what you, Dagmar, Bionews and our fellow readers have created.  As a graduate engineer my literally skills are grossly limited, thus infrequent co…[Read more]

<p style=”text-align: center;”>Yesterday I watched the Cubs game to get an idea of how the MLB commitment would play out … and I was more then pleased with the result.  All players had ALS on their uniforms, many spectators had ALS shirts, etc. and the announcers spoke about ALS and Gehrig constantly.  I have no idea how successful Lou Gehrig D…[Read more]

I experienced a number of symptoms (loss of strength, falls, lack of coordination and stamina, etc.) for about a year and was uncertain whether it was part of the aging process (early 70’s) or something more.  My primary MD referred me to a local neurologist who tested me and suggested I go to a medical center since he said it was a serious…[Read more]

As an 80 year old pALS with symptoms starting 10 years ago and a definitive diagnosis 7 years ago, I agree with the comments made above.  Disciplined eating and exercising in moderation is invaluable to maintain weight, strength and balance.  I also ‘vest’ and nebulize to optimize pulmonary function.  I’ve always been a “glass half full” guy so ma…[Read more]

No, ALS was not a factor in my vote in 2020, since I didn’t discern any difference either candidate would make to my health care.  As an 80 year old veteran the VA has been invaluable in making my life as good as it can be under the circumstances … and I never heard either candidate speak of increasing or decreasing VA funding.  I cast my vote b…[Read more]

I voice banked using the Model Talker synthesizer program 4-5 years ago when my enunciation was better and my speech rate was more normal.  The financial cost was minimal (~$200), but the time to record the huge array of phrases was substantial.  Most pALS have the time, but need to reach back for the self-discipline!  I’ve tested the result an…[Read more]