By James “Sudz” Szudzik
I am the first born of five children. I have two brothers and two sisters. I am a baby boomer, born in Grand Rapids, Michigan just after World War II. My father served in the US Army in Papua, New Guinea. My mother, who stayed at home and raised all of us, developed my love of music, competition, and sports, especially baseball.
Being the first born, I grew up as a discoverer, not only for myself but also for my parents and siblings. As life unfolded, I found that those who were in my immediate environment brought me knowledge, insight, a Midwest work ethic, happiness, sadness, and an insight to dream of a world full of possibilities. All of this formed the foundation that made me who I am today.
In 1966 while attending Grand Rapids Junior College, a close friend was drafted. I dropped one class, and within ten days I too received my greeting letter from Uncle Sam. Over the next two years, I served as a chaplain’s assistant at Fort Knox, Fort Dix, Fort Steward, and Hunter Army Airfield.
I completed a Bachelor of Arts degree in television and radio communications at Michigan State University in 1971. In a career that spanned 41 years, I worked in probate court with neglected and abused children and in the wine and beer industry in many cities across the Mid- and Southwest. Through many moves, I met a wealth of amazing human beings.
In 1999, my legs began to feel strange and weak, and I had tripping issues because of footdrop. I could still jog, but something was changing. I also started having weakness in my arms and hands, which I attributed to a bone spur in my neck. It was 2004 when my doctor diagnosed me with, “Do you know Lou Gehrig?” A subsequent muscle biopsy confirmed I was experiencing inclusion body myositis instead.
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I’ve visited doctors at Froedtert Medical School of Wisconsin, Mayo Clinic in Rochester, Minnesota, Northwestern in Chicago, Nationwide Children’s Hospital in Columbus, Ohio, Thomas Jefferson Hospital in Philadelphi, and a holistic doctor in Ocean Pacific, California. I’ve also consulted with doctors at McGill University in Montreal and Imperial Hospital in London, England.
I was unaware of The Myositis Association until I asked a nurse at Froedtert about others who had IBM. She said she knew of a support group that met at Community Memorial Hospital in Menomonee Falls. I called the hospital and was invited to attend their next meeting.
It was at that local TMA meeting that I met others who were part of our lifelong club: IBM. I also met doctors, veterans, care partners, educators, and heroes. I learned about clinical trials, and in 2004, my wife Nancy and I attended our first TMA Annual Patient Conference in Las Vegas.
In speaking with other veterans, they encouraged me to see a Veteran Service Group for help. I filed for disability with the Veterans Benefits Administration (VBA) in December 2012 but was denied the following year. Over the next 11 years, I filed appeals with multiple Veterans Service Organizations (VSO) without success.
The greatest help for all veterans—long term or recently diagnosed—is TMA’s monthly Military Veterans with Myositis Affinity Group meetings. It was through this meeting that I was introduced to the team at Hill and Ponton law firm who helped to finally, after more than 11 years, get the VBA to recognize my disabilities from IBM. This proves the point that it is never too late to ask for help!
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While we all need to recognize that our IBM journey is our own, we all share similar situations that each of us can relate to. That’s why I also participate in TMA’s Nationwide Myositis Support Group, Wisconsin Support Group, Men with Myositis Affinity Group, and especially Military Veterans with Myositis Affinity Group.
I am also surrounded by an incredible support network of family, friends, neighbors, my care team, the homebound Wisconsin Veterans Group that meets twice a month, and even the postal workers who bring our mail into the house every day. And of course, my dog, Schuster!
Life is indeed a blessing!
Sudz is a coleader of TMA’s Military Veterans with Myositis Affinity Group. He not only dreams of but works toward a world full of possibilities for his fellow veterans as well as those who live with IBM. He and Nancy and Schuster live in Menomonee Falls, Wisconsin.
A great story. It’s a shame that like Sudz many of us veterans have to travel the same path before the VA will recognize this dreaded disease which not only affects the patient, but family and friends have to live with it as well. By giving of his time and knowledge about Myositis,
Sudz is an inspiration to many veterans and non veterans by being a leader and coleader of the many infinity groups TMA has started.
It’s been a pleasure working with Sudz providing information, help and a desire to not give up.
I asked Google’s Gemini today if it could help me to better understand my husband’s diagnosis and ways I might be able to help him. And here I am for the first time I am finding our that we are in fact not alone. As we thought. And your story is inspiring . Mostly that you have endured and it’s clear you found a way to cope with this and that gives renewal my hopes. That we took may be able to as well.My husband and I are just beginning our journey. We have been told that he acquired this disease most likely as a result of having taken the COVID vaccine. He is completely bedridden unable to do just about anything for himself he has all but giving up on getting any sort of relief. He suffers nso badly and I do not know what to do to help him in any way. My heart is breaking as I helplessly watch his decline.
Tomas and Carla – i read your story and i hope God Bless you… youre very brave..
i was diagnosed about a year ago with IBM – they did a biopsy which definatively tells you whether you have the disease..
My problems started with severe swallowing issues which no doctor was able to cure… then AFTER taking the covid vaccines, my other symptoms exploded… severe muscle weakness in my peripheral system (arms, legs, hands, and feet)
I see a neurologist in sarasota florida named dr Hanes..
He suggested we TRY Iv IG medication… (introvenous immuniglobulin)… i take these treatments once each month intravenously…
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I can NOW swallow almost as good as when I was 20 yrs old.. my throat muscles which were all but paralyzed are now very functional… these meds had a major improvment in swallowing… i can also move my fingers and hands Much Better than before i was taking the treatments… dont get me wrong, they are NOT 100% but I can tell you definatively that this medicine IS helping me..
BTW – these meds are NOT SUPPOSED TO help with IBM…
Perhaps this will help Tomas.. I suggest you talk to his neurologist….
Good luck and God Bless you
Hello Mr and Mrs Labrador
I was diagnosed with Myositis in June 2021 a few months after receiving the Moderna Vaccine.
I immediately registered with VAERS vaccine injury reporting. This was of no help whatsoever.
I found that no one believed that it had anything to do with the vaccine. My rheumatologist gave me a written statement that She agreed with the Vaccine diagnosis because She had many patients that had recently aquired autoimmune diseases after the vaccine. I have been receiving IVIG infusions now for 3 years. They seem to help, but the Myositis is stubborn. I hope you are able to see some relief (maybe with IVIG infusions?). The Vaccine provider should have to be responsible for the damage they have caused.
You’re an inspiration and a hero to me, Sudz! Loved reading this and learning more about your family (and your dog 😄), Your positive outlook is inspirational. Thanks for sharing your story. God Bless You!
It’s great to hear your back story. I wish there was a way to hear about the stories behind our friends on MMM. Keep it up!
David