Last night while trying to fall asleep, I realized that I don't always give the whole picture of my new life. I talk about all the things that I can do and how wonderful they all are. The truth is, I have to take extra care of myself to ensure I can continue a happy, productive life.
Because I have Dopa Responsive Dystonia (DRD), I have to make sure I get a minimum of 8 hours of sleep every night (not always easy with 3 kids). Plus, at least once a day, I need to take a nap. It's funny, because this almost sounds like the life of a two year old!
The brain makes Dopamine while a person sleeps. It then releases it through out the day as needed. My brain doesn't make enough Dopamine while I sleep, which is why I need the extra rest. Stress is also a huge factor with this disorder, so I try my best to live a stress free life. When I have either too much stress or not enough sleep, my balance is off, which can result in falling, I have a difficult time grasping objects with my hand and my arm and legs tighten up.
Yes, this probably doesn't sound like fun, but I am so grateful that there is medication out there that helps me live a much better life! It's up to ME to keep the stress at bay and get plenty of rest.
Tomorrow is Father's Day and I can't help but think about the man who raised me with love and understanding.
Growing up I watched my dad come home from a long day of working construction, yet he always had time to ask me how my day was or play a game with me. This time was always filled with smiles and laughter. He never doubted my abilities to make my dreams come true, but more importantly, he never treated me differently because of my physical limitations.
I can honestly say that I am who I am, because of my dad. He made me a caring, happy, strong woman and I will be forever grateful for all he has done for me. I love you Dad!
I can cross another adventure off my bucket list. I painted!!!
My home has been in desperate need of a pain job. With Steve working long hours, I felt that this was a task that I would need to do. My good friend, Kate, volunteered her time and expertise to help me paint my living room and entryway.
I was in awe, that I was able to stand on a step stool and roll the color on the wall until midnight! As you are aware, my mobility used to send me to bed in the early evenings. Plus, my arms would have never allowed me to complete the up and down motion of a paint roller.
My walls look so fresh and clean now. What a gift it is to know that this is something I can do on my own. With Kate's help, I feel so empowered. Prior to my diagnosis, I would have never been able to complete this task. And until last night I didn't have the confidence to try something that looked so intimidating. ,
Thanks Kate for being a great friend and helping me into the wee hours of the night!
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!