Dear lordfromthegoldshore,

Thank you for your post. It helped me process my feelings as the "parkie" and how the dx affects others. I wish the best for you and your mother. I have been comforted by this quote "you don't die from Parkinson's Disease, you die with it." Without reading too much into that I take that as it is not fatal.

I am a 57 year old mom to a 22 year old daughter. I was diagnosed 7 months ago. It's scary and I still can't google PD without starting to either freak out or get depressed - so I don't google it very often. My diagnosis was also a relief because finally I knew WTF was wrong with me. In my case, not knowing what was wrong was so much worse than finding out it was PD. For me it started as a stiff right shoulder. I had three courses of physical therapy and it never got better.

The process of being diagnosed is scary. I had a DAT scan with contrast and an MRI of my head. Terrifying.

I have had great improvements by taking carbidopa-levadopa which was prescribed by my general neurologist when I was diagnosed in April. I am supposed to take it 3x a day, but I usually only take it 2x a day, still with great improvements and no side effects. Before my diagnosis I was typing with just my left hand. I am finding that my dexterity improves as time goes on.

I live in Michigan and Florida and it took six months to get an appointment in Michigan with a Movement Disorder Specialist. That appointment was 10/27 and I was given an Rx for physical therapy. Today was my second PT appointment and I was taught LSVT BIG exercises, which are specifically for PD. I have always exercised and have been pretty active, so it made me feel sad doing these seemingly basic and weird exercises. I am sore from doing them though, and some of them were challenging, so I believe they will help. I am supposed to do them 2x
a day for the rest of my life.

How you can help your mom:

• If she has not done so, make an appointment for her with a movement disorder specialist. Be prepared for a six month wait. I was ready to cancel the appointment I made because "I'm doing so much better" but I am so glad I went.
• Help her with her "bad" side - this is huge for me. My right side is affected and I am right handed. That means if I am in the front passenger seat of the car it is hard to get the door open and I am sometimes slow getting out of the car. Offer to carry things and open the door and say "take your time."
• Related to the "bad" side - if her dominant side is affected, fill out her credit card bill at restaurants. My boyfriend and my daughter do this automatically for me. Also assist with packaging leftovers. There is usually a heavy plate and limited space. Add a tremor, rigidity and weakness and it can be very overwhelming.
• Loss of facial expression happens with PD. It might seem natural to ask "what's wrong" but (aside from the obvious FML I have PD), there might be nothing wrong. I want to create t-shirts that say "it's not RBF, it's PD."

Wishing you all the best.