Bud Malinoski Bud Malinoski Updates

First post: Nov 21, 2022 Latest post: Oct 24, 2023
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We aren’t really sure when his symptoms first started, but we noticed a distinct “limp” when he walked, around May 2021. As the months progressed the limp started getting worse and included a drop-foot symptom as well. Holly was concerned that he would be able to walk her down the aisle on her wedding day August 21, 2021. He did just fine getting her down the aisle, but it became obvious that he was struggling to walk and had lost a considerable amount of weight. I suggested he get with his primary care provider and get things checked out. She ordered some tests to be done, and he had CT scans, MRIs, and EMGs done by late 2021 and early 2022. All tests came back “inconclusive”.
Meanwhile he continued to lose weight and struggle to walk. So early in 2022 I started to press to get him in with a specialist. He was referred to Bronson Neurology. The Dr ordered a boatload of more tests, which took months to complete due to scheduling difficulties. I finally convinced Bud to use a cane for assistance in walking. Again, tests came back “inconclusive”. More & more people started noticing his severe weight loss and limping issues, and would regularly ask what was wrong. We still had no idea, but when I answered that we didn’t know, it felt like I was being judged that we didn’t know - and that I didn’t care. And nothing could be further from the truth. So finally by August 2022, we decided he needed more specialized care, and he needed to get to a specialty hospital. Mayo Clinic was quite a distance, but Cleveland Clinic was about 4.5 hrs away. U of M hospital was also on our radar, even though they “didn’t want him”. “We will call you when are interested in taking your case.” Um no. I didn’t want that kind of attitude. So I had him make phone calls and get himself an appointment at Cleveland Clinic. He was set for a Monday in Oct. When that date got close, I suggested he call and see where we’re going, what time, etc. CC is a huge place and I wanted to make hotel reservations near the main location where we’d be. He discovered he didn’t have an appointment after all! - due to a “glitch” in their system. But he was “triaged” and put on a waiting list.  I was livid. We’d waited 2 months to get in to CC, and now, no appointment? So I googled phone numbers and started calling until I got a live person. She was very helpful and did mention he was “triaged” but I told her at the rate of his deterioration, I didn’t want to wait much longer. She emailed a questionnaire and also requested a lot of records, diagrams, images, and results from his Neurologist at Bronson. I have a great relationship with the office manager of his Neurologist’s ofc and she was on the ball, sending them all kinds of information. I was so relieved. I finally got him an appointment on Monday, Nov 14. “What time do you want? It’s pretty open…” so grateful. 

Unfortunately, this new neurologist wasn’t so hesitant to give a diagnosis. It wasn’t one we wanted to hear. But we need to know the animal we’re fighting, in order to equip ourselves well. “You have ALS. Lou Gehrig’s disease. There is no cure. Prognosis is 3-5 years.” Words that shocked and rocked our world.
NO! This can’t be right! He just retired and sold the dental practice in April. We were supposed to be enjoying the retirement years! How can this be?
I had to bolster his attitude, reminding him Holly is pregnant and his first grand baby will be born in March 2023. Ryan just got married a few days prior to the diagnosis, and perhaps he would also provide grandchildren. And I just completed a racing season in my Corvette and landed in the NCCC Top 15 Ladies’ points finishers and will be honored at the National Convention in June 2023. THERE IS A LOT TO LIVE FOR! And his prognosis is 3-5 years. He isn’t dying tomorrow, or next week, or next month, or even next year! 
So as he continues to deteriorate, we just ask for prayers and good thoughts to help him along this road. We also ask for prayers for strength and health for me, his wife, as I embark on a path I never ever thought I’d be on. 
A lot of lovely friends and acquaintances have asked what they can do to help. As we become aware of what we need, I will be putting it here or directly contacting folks. Right now I feel like I’m upside down in a tornado. I don’t know which is up. And I function best and feel most comfortable when I have lists - action plans - that help me put my world in order and accomplish a lot of stuff. But sadly I haven’t got a list, haven’t got a road map, haven’t the slightest idea of how to start to navigate this. So many things have to happen and I’m almost paralyzed by the sheer magnitude of what is facing us, but mostly me. Our pastor reminded me “One day at a time. Each day has enough trouble of it’s own.” And that’s also how you eat an elephant: one day, one bite, at a time.

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