Mark Schuster

First post: Feb 8, 2019 Latest post: Mar 19, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. 

As you all know dad has been battling his disease since about 1986.  His diagnosis of Polymyositis, an auto immune neuromuscular disease, has reared it's ugly head.  He is the most stubborn man we know, and he has fought this battle with integrity, no complaining, and a fantastic sense of humor. 

Since about 2016, after a bad fall in the backyard, his condition has rapidly declined.   He became more and more immobile over these past few years, going from the walking cane, to a walker to a walker/wheelchair and most recently the electric wheelchair.   His pride has always gotten the best of him but he also has accepted the hand he has been dealt.  His faith and spirituality is keeping him stronger than ever.  

The last year they were fortunate enough to have some pretty amazing doctors on their side over at the Barrow Neurological Institute here in the Phoenix area.  Between the neurologist, the rheumatologist, cardiologist, dermatologist, infectious disease specialist, and the pulmonologist,  they have all worked really hard to figure out the root of his disease and they came up with a plan for better treatment.  After a lot of genetic testing,  he was to have a muscle biopsy to see if he truly has polymyositis  or a form of inclusion body myositis, a progressive muscle disorder characterized by muscle inflammation, weakness, and atrophy.  But instead, after a visit with the dermatologist,  he was found to have a bacterial infection called MAC (Mycobacterium Avium Complex Infection).  They started to treat this infection with antibiotics however he can no longer swallow the horse pill.

He has been in and out of the hospital over the last few weeks with a high fever, nausea, a few ulcers and a lot of pain.  He has been poked and prodded with MRI's and CT scans and every other test known.  He is no longer eating because of the  Dysphagia.  People with dysphagia have difficulty swallowing.  It can make it hard to swallow food or liquids safely, or to swallow at all.  He has refused a feeding tube in order to get nutrients because that would be a year long treatment and even then all the problems above are still there.    Right now his wishes are to get some sleep and to manage his pain.
Julie, Kari and I are here along with aunt Nancy.  Dad's brother Jerry is going to fly out next week.

Next steps are to bring him home with Hospice and sit with him and reminisce about how wonderful and full  his life has been.  He has no regrets in life, he is a man of integrity and one of the hardest working men in our life.  We are honoring his wishes and we hope you too can share some great memories you have had with the man I am proud to call dad- Markie Mark.