[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 neurology, pulmonology, PT, speech, OT, dietary, social, & palliative specialists and provide all equipment and medications involved with pALS care. They also conduct 15-18 support group meetings a year. Their staff is excellent and very accommodating. My ALS journey would be much more difficult and expensive without the VA.

[Bob Ives]

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 addition to monitoring my situation they offer counsel and equipment to address my symptoms and provide an opportunity to discuss my specific situation with knowledgeable professionals.  They don’t offer a cure, but they enrich my life and I’m grateful for their assistance in dealing with this dreadful disease.

[Bob Ives]

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 contributions.  But I scan each day’s content and select items of interest which broaden my understanding of this dreadful disease and offers suggestions to make my life better.  Thanks to you and all the others … keep up the good work.  Bob Ives

[Bob Ives]

<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 Day may have been financially, but it sure enhanced ALS awareness.  The first step is always to create awareness, as was done in the Ice Bucket Challenge.  So, in my assessment, MLB gave Lou Gehrig Day a terrific start and now the ALS community needs to continue working with them to make it even more successful.  The responsibility to initiate this rests with ALSA and the other ALS support organizations … then we who are afflicted can jump on the initiative.  My takeaway is:  “Great start … now let’s move forward”!</p>

[Bob Ives]

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 neurological issue.  I went to Univ. of Chicago, Mayo and Northwestern Memorial before I received a definitive ALS diagnosis … total time about 3 years.  On the journey, I learned there are no definitive ‘markers’ , so it becomes a process of elimination and observation over time.  I respect and applaud the diligence of the medical community, but the lengthy period of uncertainty sure works a hardship on the patient and his/her family!

[Bob Ives]

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 maintaining a positive state of mind is easier for me than it is for some.  I’m still ambulatory with a rollator and my speech is starting to become a problem.  I’m very  careful not to fall down (again!) since balance is a key issue and the consequences of a fall can be catastrophic.  I’m fully retired, but engaged with family, friends and businesses so my days are full.  If you’re a veteran, make sure you check with the VA who have wonderful programs & support since ALS is a service related disease.  If not, there are support groups in many of the larger cities (Les Turner ALS Foundation in Chicago) that can really help since they can direct you to the best resources.  We all know the end-game of ALS, so our focus needs to be on delaying it as long as possible and on quality of life.  I’ll readily admit the early going was rough emotionally, but with faith and the support of family and friends I’m in a really good place!

[Bob Ives]

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 based on many other differences, primarily overlooking Trumps (lack of) style and focusing on his accomplishments.

[Bob Ives]

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 and find it’s OK, but I haven’t had to use it yet.  I would recommend voice banking since it’s low cost and must be done well before it’s needed (in my case, years) … minimal investment with good upside potential.  It certainly isn’t a replacement for speech therapy or other pulmonary exercises, but appropriate to use with other remediations.