Read the majority of literature on this rare form of dystonia and it seems very cut and dry. You have dopa responsive dystonia, if symptoms are seen from a young age and when a low dose of Sinemet is taken, a miracle occurs. Suddenly everything is resolved and normal life resumes, as long as the medication is taken.When I took my first yellow one I was expecting to cartwheel down the lane half an hour later.
Scratch the surface and you discover, even for those who have the classic form, life isn’t that simple after all. Sinemet is a treatment, not a cure and bodies are not machines. There are good days and bad. Times when the magic works and times it fails to live up to expectations. Colds, other bugs, tiredness, stress, hormones and even a bacon buttie can affect how well you can move.
Dig deeper and you discover DRD is a snowflake condition. Everyone is unique. Some are similar while others seem completely different but ultimately, they are all snowflakes. The majority are children when symptoms appear but others are teenagers and adults. Some people respond extremely well to low doses so mountains can be climbed yet others need more pills to climb up the stairs. Some DRDers have cognitive effects, such as depression, alongside movement problems. There are those who have minimal symptoms when they are not dosed up while some rely on sticks and wheelchairs. Some just need Sinemet and others rattle as they take their cocktail of drugs but everyone responds positively to the tiny yellow pill!
Another thing which is prevalent in DRDers, young and old, is the appreciation of the little things in life that people naturally take for granted. The ability to walk across a garden to touch and smell a flower is incredible. Making a drink with ease feels like a miracle. Everyday your body reminds you how precious things really are and how easy things can be different. Every moment the magic of levodopa works is treasured. It can be good to be a snowflake.
You can also follow me on Facebook https://www.facebook.com/pages/The-ups-and-downs-of-being-wobbly/798978946849129?ref=aymt_homepage_panel