If your child took antibiotics for an ear infection and it cleared, would you think they had made up that their ear hurt days earlier? If a friend began taking new medication for migraines, would you question that their migraines were never an issue in the first place? My guess is, no. So, why would someone question an individual who once had limited mobility due to spasticity, who began taking L-dopa and can now walk? This may not have happened to me, but it may as well have. It has triggered a frustration deep inside me that I can’t explain.
Since my story went viral last spring I have received many, many inquires about Dopa Responsive Dystonia (DRD). In fact, nearly two dozen began taking L-Dopa and are seeing significant results! Amazing, right? Even though they are progressing on the new medication, they often ask me questions about my experiences such as how they can gain strength and how to overcame the internal thoughts of can I actually do this?
The other day I received an e-mail from one woman explaining that some people, including her doctor, don’t believe that the medication has been helping her as much as it has. Her physician asked her if she wanted to see if she could go with out her l-dopa for awhile “to see what happens.” To say I was floored would be an understatement. I could feel my blood begin to boil, but then she went on tell me more...Her roommate actually hid her new medication for 24 hours, because he thinks she’s making this all up! In the meantime, she was in lots of pain from muscle spasms and became more immobile.
I had to take a couple deep breaths, because I can’t help but wonder who are these jokers? And, I’m sure glad none of my friends acted like this! Like me, this woman went three decades dealing with mobility issues and had to use a cane and mobility scooter. So I don’t know about you, but I highly doubt that last month she decided to quit the charade and start walking independently.
As I write this, I can feel the stress build in my chest for the woman who is going through this. I want to say Go find a new doctor and make new friends! Luckily, she is getting a new roommate! Thank Goodness!
I felt like I had to share this for a couple reasons. One: to encourage people not to judge others for what they are going through. If you think that this is “all in their head” please do your homework to understand the situation better, and keep the thought to yourself because the journey is hard enough without comments from doubters. And two: to tell my friends thank you for being so understanding during all of my medical adventures! You are the BEST!!!
After living the first 33 years of my life thinking I had Spastic Diplegia, a form of Cerebal Palsey, I was correctly diagnosed with Dopa Responsive Dystonia (DRD). I am on new medication and doing things that I never imagined possible. This has changed the lives of my husband and two daughters. I truly believe that I am living a miracle each and every day. Life can't get any better than this!