Over the last two weeks, as people in our lives have inquired about Ryan's condition, I am starting to discover a trend. I will start spouting off about a diagnosis, a prognosis, scientific studies, etc. and many people will just stop me and ask, "So what does it all mean?!" My hope with this post is to describe a little bit about what Ryan's life will look like in light of the recent diagnosis.
Ryan has a form of Muscular Dystrophy. The disease involves the muscles in Ryan's arms and legs deteriorating at a slow progression until they are no longer able to perform the normal functions of arms and legs. Ryan's disease seems to only be affecting his legs at this stage which is great! More great news is that we were originally expecting the progression to wheelchair would be within 10 years, but now with the recent news about his specific genetic mutation, it seems Ryan is likely to have 20 years before he is completely unable to support his own weight! Might still sound depressing to some, but really good news to us!
The next question I often get is, "So what happens now?" Because there is no treatment and no cure available for this disease, there is very little for us to do. As I mentioned in the last post, Ryan's attitude will be a very important factor in determining what his future will look like. People that are able to have a positive attitude seem to have a slower progression with any type of debilitating disease. (And Ryan is handling this as well as any of us could have ever hoped!) In terms of future care, Ryan will be seen regularly by the neurology team at the University of Pennsylvania, and will check in with the team at NIH at least once a year. We have added Ryan to a list of people with similar diseases so that we will be notified if there are ever any drug trials available.
It was also recommended that Ryan continue to make some basic lifestyle changes to make his life a little easier. Just little things like avoiding stairs and uneven ground. They recommended we move to a home with single story living but we have decided to stay where we are and just make some changes to our home. We will need to renovate our bathroom in the near future because that is one place that Ryan will notice the affects of his disease before he will need assistive devices. We are told that little things like standing up from a toilet or standing for a period of time in a shower will eventually become difficult.
After going through all that, people will sort of whisper to me, "So how is Ryan doing with all this?" Ryan continues to amaze me! Ryan and I have been together for 11 years. We started dating when we were 18 and though, at the time, I would have told you we were already adults, the truth is that Ryan and I really grew up together. There are moments when I truly believe he knows me better then I know myself and vice versa. I am not ashamed to say that I was very worried that Ryan was going to take all feelings about what he is going through, bottle them up, and never want to think about it... let alone talk about it! I would have been wrong. Ryan seems to really be handling the news as well as I could have hoped. He seems to have accepted it and rather then dwelling on the diagnosis, he is living his life. That is the best possible thing he can be doing.
I truly believe Ryan's faith in God is what has helped keep him so strong. A number of years ago, Ryan got a tattoo on his arm of a cross of nails and the words Philippians 4:13 written underneath. The verse that reads, "I can do all things through Christ who strengthens me." always held a special place in Ryan's heart. It now seems clear why God would impress this verse on Ryan's heart from such a young age. God knew what Ryan's life had in store, as only He can know. I believe God has been preparing Ryan for the fight he has ahead of him, and with God's strength, Ryan will continue his fight to stand.
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