Greg Gelhorn ALS Fundraiser


Please share this request to your connections and friends.   We are raising money to help with Greg Gelhorn's long term care from ALS.

In early 2016, my brother-in-law, Greg Gelhorn, started experiencing fatigue, lack of mobility in his feet, and muscle twinges.   On May 4, 2017, Greg was diagnosed with ALS.   Little by little, ALS destroys the mind's ability to communicate with the body's muscles.   Greg was initally given 2-5 years to live.   Unfortunately, Greg's progression has been rapid, with no pleateau. 

Here is Greg's progression: 

·       October 2016.  Greg runs the Twin Cities Marathon.  He struggles to  finish and experienced fatigue for weeks after the marathon.

·      November 2016.   Greg realizes that he can’t jump while playing pick up basketball.  He thinks it’s related to the lasting effects of the marathon.  He plays twice in the month.  It would be the last time he ever plays basketball.   Notices a slight foot drop, where the foot will not lift or lower.

·      Jan/Feb 2017.  Develops a full drop foot.  Again, he believes its related to the marathon.   He is fitted with a brace.  Greg sees signs of fasciculation.   He muscles are twitching.

·      March 2017.  Greg sees a neurologist, a chiropractor, and a spine surgeon.  All believe it’s probably a pinched nerve.

·      April 2017.  The neurologist now believes Greg might have ALS.

·      May 2017.  ALS Center of Excellence in Minneapolis confirms that Greg has ALS.  The Mayo Clinc enrolls him in a paraneoplastic study to eliminate all other possibilities.   It is a 9 week IVIG study.  Greg gets 11 infusions.  There is no positive response to the treatment.   The treatments leave Greg fatigued and listless.  Greg starts to use a walker and a cane.  Lung capacity is around 74%

·      June 2017.  Greg stops experimental treatments, as they are ineffective.  Greg is using a walker full time now.  He becomes afraid of falling, as those afflicted with ALS cannot raise their arms to brace for a fall.

·      July 2017. The family takes trip to Europe.  Greg is 100% confined to a wheelchair.   His ALS is confirmed by doctors for a 2nd time.  He develops a Deep Vein Thrombosis and a blood clot in his lungs, probably from the physical stress of the trip. He goes on blood thinners.

·      August 2017.  Greg loses his ability to use his right arm.   He has to use his left arm to lift the right.  Lung capacity is down to 55%.  He gasps for air when you talk with him.

·      September 2017.  Greg has to use an electric wheelchair full time for mobility. The family starts construction on a handicap bedroom and bathroom.

·      October 2017.  Greg agrees to videotape interviews to record his life for his children and family.  We capture 7 hours of interviews on his life. The inspiration to film Greg came from the movie, Gleason, a documentary covering five years in the life of the former New Orleans Saints defensive back, Steve Gleason, who suffers from ALS.  A gastronomy feeding tube is inserted as well as an IV port.

·      November 2017.  His right arm is completely immobile. He still use left arm/hand to eat. Cannot bathe, use the bathroom, and get out of bed/get into bed without help. Lung capacity down to 35%.

·      December 2017.  Construction is complete on his handicapped bedroom and bathroom.  His lung capacity is now between 15%-20%.   He cannot text or use social media.  Greg can still speak and swallow.  Part time care coming in 3 times a week.

·      January 2018.  Fitted with bi-pap plastic oxygen mask for breathing.  After much consultation, doctors recommend that Greg not get a tracheotomy because of the recovery time and the limited time he has left.   Independently, they shared the same advice. “Live every day to the fullest.”  Greg will start hospice this month to help with his comfort.  The doctors have said while he is the not fastest decline they have ever seen, he is among the small minority who decline this quickly.  There have been no plateaus in since his diagnosis.  Greg has gone from being diagnosed in May to confined to a wheelchair 4 months later.   Greg is 5’11” and now down to 130 pounds.

The Gelhorn family has already spent tens of thousand on a wheelchair accessable van and wheelchair accessable bedroom and bathroom.  ALS patients need to be moved constantly for comfort and to prevent cramping and soreness.  Greg can still feel pain.  Greg need full time care, 7 days a week.   Your donation will help the Gelhorn family cover healthcare costs, which are going run thousands of dollars each week.  We are trying to make feel as comfortable as possible as he enters the later stages of ALS.

Thank you for your consideration to donate to Greg and his family.
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Organizer and beneficiary

Derek Fessler
Denver, CO
Amy Gelhorn

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