Warning: these first couple of sections are a bit of a downer, but just hold on.
It’s difficult to want to give an update when the news just isn’t what you were hoping it would be. Josh started on Syprine (the original drug he was prescribed in April) about two weeks ago. Although the Galzin (zinc acetate) that he was originally taking was slowly ridding his body of copper, his tremors were not responding to the treatment. Our doctor wanted Josh to try the Syprine instead and she appealed to our insurance who did eventually agree to cover it. Josh is now two weeks into taking the Syprine. Unfortunately, his symptoms have continued to get worse.
There are very few people who have Wilson Disease and it can affect people very differently. Due to this, it is extremely difficult for anyone to know the course that this disease will take in a specific person. However, Josh has done quite a bit of research. According to studies he has read, it is fairly common for it to take up to six months of treatment for a Wilson Disease patient to see any improvement in their symptoms. It is also not unheard of to see worsening of symptoms during initial treatment. Josh’s research indicates that most people with Wilson Disease do eventually recover, and are able to regain most of their neurological functions. We are hopeful that this will be the case for Josh.
The most difficult thing for us right now is that we have no reliable time-line for when Josh will start to get better, or (at the very least), for when he will stop getting worse. At this point Josh is working from home, about three days a week. We feel very grateful that he has been able to continue working at least part-time.
Josh’s symptoms are caused by the large amount of copper that has built up in his brain over his lifetime. Much of that copper is now freely flowing in his blood as it waits to be released from his body. As this free copper circulates through his blood and body, it can sometimes cause more damage.
Some have asked just what exactly Josh’s symptoms are and what the worsening looks like. In March, Josh developed a tremor in his head that eventually became constant. He then developed tremors in his arms and hands, making it difficult to do anything requiring fine motor skills (using eating utensils, shaving, writing, etc.). Most recently, he has developed tremors in his legs which have made it difficult to walk. We recently purchased a cane to give Josh some extra support while walking. Each of the tremors has become more constant and extreme week to week. The only relief Josh gets from the perpetual shaking of his head and limbs, is by lying down.
Physical and Occupational Therapy
During Josh’s last appointment with his neurologist, she prescribed him some physical and occupational therapy. Josh had his first appointments this week. To be honest, we were both feeling pretty discouraged. We were skeptical about whether or not this therapy would even help at all. Although they’ve never seen a Wilson Disease patient before, both Josh’s occupational therapist and his physical therapist have worked with patients who have tremors (such as those with Parkinson’s disease). And, both of them seem confident that the activities and exercises that they’ve assigned to Josh will help him regain some of his lost function.
They talked to us about the importance of Josh preserving his muscular strength. They also encouraged Josh to at least attempt to do some of those day-to-day tasks that have become so difficult for him. Doing these things will hopefully help Josh to bounce back more quickly as his body starts to heal and his tremors lessen. Just having some things to work on at home made us feel more hopeful and not so very helpless.
We’re looking forward to Josh’s future PT and OT sessions and are optimistic that they will indeed help.
Truthfully, I’ve been reluctant to write another post about this experience. During the past few months I’ve been pretty good at mentally avoiding the reality of our situation. I’ve thrown my energies into the daily tasks required to care for Josh and our son without allowing myself to think about the future. I’ve sort of bull-dozed my way forward with the mantra, “He’s going to get better soon!” running through my head. Writing about this experience does two things: First, it makes me confront the reality of an uncertain future and the fear that comes with all that I do not know. Second, it makes me remember and hold on to the important things that I do know.
I do not know when Josh will get better, but I do know that God loves us and desires our happiness.
I do not know why we are experiencing this specific trial, but I do know that “all of these things will give [us] experience,” and will somehow, “be for [our] good” (D&C 122:7). Henry B. Eyring stated, “…a loving God has not set such tests before us simply to see if we can endure difficulty but rather to see if we can endure them well and so become polished.” I know that this is true.
I do not know what God’s plan for us is, but I do know that He has a plan–a plan better than any that we could make for ourselves.
I do not know how to stay optimistic all of the time. I do know that God does not expect us to be perfect and that He understands when we struggle to trust Him. We are human and it’s okay for us to doubt and fear at times. What matters to God is that we keep trying.
We’ve Got This
Although our optimism falters at times, we have faith that God is in control. Also, we recognize that this trial is small compared to what so many others have been asked to endure. We are inspired by and strengthened by the faithful examples of these people.
I can’t say that we’re enjoying this experience, but I also can’t deny how much it has already taught us. I’m especially thankful for how this has drawn Josh and I even closer together.
We have read many gospel articles and talks during the past few weeks, but these three in particular struck us:
“Accepting the Lord’s Will and Timing” by David A. Bednar
“The Reward of Enduring Well” by President Henry B. Eyring
“How to Face Uncertainty with Faith” by Megan Armknecht
Yes, this experience is hard. Yes, we’re ready for it to be over. But, we’ll keep holding on.
Also, thank you to all those who have shown us so much love and support during this time! We appreciate you more than you can know!