Stepping Up My Game with My Healthcare Team By Donnie, Father, Husband, Project Leader, Former Athlete • February 5, 2019
When I think back to when I first got my relapsing multiple sclerosis (RMS) diagnosis, it seems like a lifetime ago! In many ways it was. At the time, my two girls were happy little toddlers, and my hair was brown.
A lot has changed since then. My girls are young adults. My hair is a lot grayer. And now there are a number of therapies for the treatment of relapsing MS that were not available back then.
I have to admit that when I was first diagnosed, I didn’t know very much about relapsing MS, let alone how the disease was treated. I also didn’t know that I could be a bigger part of the decision process. I did as much research as I could on the internet and at the library. I soon found out that the choices for a treatment were pretty limited.
Just as choosing the right neurologist was an important decision, choosing the right relapsing MS medication was something that required a lot of consideration too.
I discussed the options with my neurologist during my appointments. But what I didn’t tell him was how overwhelmed I felt. It was hard for me to understand that I had a disease without a cure. I didn’t know how important it was to advocate for myself.
Along with my wife and doctor, we decided on a therapy that we thought would be the most effective for me. While that treatment was somewhat effective, it also had some side effects. I was on that treatment for a number of years, until it finally became too much for me manage.
In the early years of my diagnosis, preparing for my healthcare provider’s appointments wasn’t something that I spent a whole lot of time on. My disease was stable, and aside from the side effects, the medication was working okay. I didn’t expect anything more from my treatment.
But after a while, my attitude changed. I saw that my disability was progressing, and the side effects of my medication were becoming a real problem. It was time for me to speak up for myself.
Today, I have a completely different mindset when preparing for my healthcare provider’s appointments. In the days leading up to it, I think back and write down anything interesting or unusual that has happened since my last appointment. I keep a journal of my everyday activities. When I have extremely good days, or bad days, I make a note of it. I’ll report this information to my doctor, and it helps us to see if there is anything that I may have done differently, and what, if anything, needs to change. This has been a very helpful habit.
Now instead of having an impersonal healthcare provider–patient relationship, I feel more like a partner with my healthcare team. Being empowered to be part of the decision-making process has made me feel as if I am getting the very best care possible.
Have you been able to partner with your healthcare provider on treatment decisions? Let me know what you do.
- healthcare provider
My Relapsing MS Care Team: Finding a Neurologist, a Partner, and My Way
By Donnie, Father, Husband, Project Leader, Former Athlete, March 27, 2018
My wife has always been there for me. I credit having a strong support system at home with being able to live a pretty normal life
Happily Ever After
By Donnie, Father, Husband, Project Leader, Former Athlete, October 12, 2017
I’m sure that a lot of people out there have interesting stories about how they met their significant other
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