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Jeannie Macaluso, Secretary

I am 59 years old, single, without children or pets, and live in Palm Beach Gardens, FL. I had a very successful career in pharmaceutical sales, but I lost my job in March 2017. With that position, I had either been driving long distances or sitting at home in front of my computer all day. I quickly realized I needed to move more; go to Physical Therapy at least 3 times a week, hit the gym regularly, and stretch daily to improve my mobility. I applied for disability and was approved on my first try. I’ve been using a cane for 3 years and use a walker for longer distances. I recently bought a travel scooter, and it has been incredibly helpful when traveling and when I’ve fallen and have sore knees. Fortunately, I still have really good upper body strength. Yes, I still fall, but luckily, I have not broken anything and can still get up by myself although it is getting harder as my knees have taken a toll from the falls.


My mother was diagnosed with "probable" Alzheimer's disease 20 years ago from USF's Memory Disorder Clinic. She passed away at age 75, but in addition to VCP disease (never diagnosed formally), she had many other medical conditions.  She had been diagnosed with Paget’s, and the myopathy started affecting her in her 60’s. Her older sister (she passed at age 67) had a very bad case of Paget’s disease in which her legs bowed and she broke her hip. She became bedridden, and 30 years ago the death certificate listed Alzheimer’s and Paget’s as the cause of her death. Looking back, she really had Frontotemporal Dementia.


About 10-12 years ago, I noticed I could no longer do walking lunges at the gym, as my balance wasn't good. I had tripped and fallen a few times, as my toe would catch any cracks in the sidewalk. About 8 years ago, I went on a vacation to Lake Tahoe in the summer, and we spent at least 1-2 hours most evenings in the hot tub. That had me tripping and off balance a lot. When I went to the doctor, she sent me to my first neurologist. For years they thought I had Primary Progressive MS even though I had no lesions on my brain and my lumbar puncture came back fine. Meanwhile, I was telling all of them that my older brother had muscle wasting and had either myositis or polymyositis. They never checked my muscles or questioned my family history (side note- I believe the extended time in the hot tub greatly accelerated my myopathy- I stay clear of hot tubs, saunas and steam rooms).


It wasn't until almost two years ago when I went to Mayo that I got diagnosed with the VCP gene mutation. My brother passed away 4 years ago at age 65 and had all three facets of the disease, but we didn’t know at the time what his diagnosis had been. At Mayo my EMG showed I had muscle weakness in addition to nerve weakness. I was diagnosed with a slight case of Paget's, and my brain MRI was normal.  I can’t stress how phenomenal Mayo was, as we went through my whole family tree.  My sister, at age 62, just had the genetic test, and she also is positive for VCP Disease. She was diagnosed with Paget's over 20 years ago, and she is just now starting with muscle weakness. Luckily, the three of us never had children.


I am not letting this disease alter my lifestyle. I am on disability, so since I’m no longer working, I go to PT 7-8 hrs/wk (I joined their Rock Steady Boxing), I go to water aerobics, hit the gym 2 times/wk (have to space it out if PT works my legs hard), and get stretching by a professional 2-3 x/week. Yes, my day to day grind is focused on rehab, but I still have season tickets for the UF Gators football team (3.5 hrs. away), and I travel as much as possible. A year ago, I went on a 17-day cruise through the Panama Canal. I went on a week’s cruise in February and still went kayaking and snorkeling. I went to Ireland in July and used my new scooter there. This disease won’t define me. I just have to figure out safe ways to do the things I love. I am spending quality time with family and friends and living each day to its fullest.  I am thankful that I finally know what disease I’m fighting. Working with Cure VCP Disease, Inc. is going to be my most important job that I’ve ever had. Please reach out to me if you have any questions or just need to talk.

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