I used to know exactly who I was, what I wanted and how to get it. I wanted an education, I got it (not the best but it would suffice). I wanted a wonderful relationship, and I have now been married to my beautiful wife for over 17 years. I wanted a good job, I got it and have had several and I am lucky to be well respected. I wanted a nice house. I have had several. I wanted a boat, I got it (two in fact).
I once would wake up before dawn, and ride my mountain bike more than 120 miles before coming home at dusk covered in mud. I used to go hiking, biking, skiing, motorcycle riding and most anything I could outdoors as time and life would allow. I often had difficulty with work life balance as I wanted it all but I got that sorted out as I matured and realized that money wasn’t everything.
Slowly, in the early 2010's, I came to realize that my body wasn’t keeping up with my minds desire to increase my physical activity. Melissa and I worked hard to spend more time together outdoors despite this. I thought that increasing my physical activity would reverse my decrease in strength as it does in normal people. We rode our bikes together. Kayaked together and I even tried to get her to go skiing with me (she didn’t enjoy it like I did…). We even started to golf together. Then, in 2012 I had a nasty skiing accident that messed me up pretty bad. Perhaps Melissa was on to something.
I attributed much of my physical issues to my skiing accident and simple aging but after several injections and back surgery, my body still was losing strength. I went to several doctors over the next few years complaining of weakness and numbness in my legs. After several nerve studies, the doctors concluded that I was fine and I should go live my life. So I did, or at least I tried.
I muddled along for a few years but my weakness kept getting worse. I finally had enough and I went back to the doctors determined to get my back issues figured out so I could move on with my life. Finally, I met with a doctor that didn’t think I was crazy and took the time to do a more complete exam.
After being electrocuted for what felt like eternity for nerve and muscle tests, it turns out my back was not the problem at all.
Now, I am a person with Valosin Containing Protein (VCP) Disease.
Lucky me. The one bright spot about who I am now is that I am not crazy. Some may disagree there. But at least I now have answers to all of the questions that I had for so long about why I was becoming weaker over time. It turns out that all the physical activity I focused so heavily on was actually hurting me.
VCP Disease is a super rare genetic disease, which can affect a patient's muscles, bones and brain. There is no treatment or cure. In short, my muscles are dying. They no longer recover after exercise. Starting with my skeletal muscles, then my heart and lungs and then…
Everyone's progression is different, but I don’t expect to be around to collect social security.
You can learn more at CureVCP.org.
Now Melissa and I have worked incredibly hard to simplify our lives to try and focus on what is important and prepare for what is to come. We have downsized our home to something much more manageable considering my decreased physical ability. We have sold the boat and truck and are trying to clean out everything we don’t need. Turns out that is harder than it seems but totally worth it. We are focused on our financial stability given the inevitable economic downturn and increased healthcare costs that will come down the road.
Who I am now is a person who wants to focus on what is important. My health, my family and my security and independence for as long as I can have it.
So who will I be going forward? I hope to be someone who spends more time with friends and family. This won't be so easy since my friends and family are all over the place. Beyond that, I am not sure.
This is why I am a mess. It is not that I don’t know who I want to be, but it’s a question of who I CAN be?
Before, I had a plan on who I was going to be. I was going to work hard and retire as soon as financially able so Melissa and I could buy a nice (bigger) boat and sail up and down the coast from Baja Mexico to Alaska and spend most of our time in the San Juan Islands. We would hit up all of the hiking and biking trails and maybe I could fit in some rounds of golf. Maybe buy a coffee shop or something just to keep busy when we were not on our boat or flying off to other parts of the world with our friends. This was my dream retirement plan. Sadly, this disease ended those plans as I am no longer able to safely captain a boat. And hiking is no longer an option and, biking and even golf will soon no longer be possible either.
So in the short term, I intend to keep working for as long as I can to allow for as much financial security as I can provide to Melissa. I enjoy working and it is the least I can do. She is my rock and has shouldered most of the physical burden during our downsizing. At least she does like her workouts. I certainly don’t mind watching her mow the lawn while she wears yoga pants.
As for who I want to be, that is simple. I want to be cured…
In order to do that, I need to raise as much money as I can so we can fund medical trials and gain as much exposure as possible for this disease. It is very likely that many people have been miss-diagnosed with diseases that present similar symptoms such as MS, ALS and others.
Will you help me and others like me raise money to help find a treatment and hopefully a cure?
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