Good morning! I have been reading this board for a few days now - even made a few posts. Your stories are both terrifying and uplifting - and consistently courageous. It's time to step into the ring and introduce myself.

I have to begin with my first shove into the world of neurology, when at 48 I was diagnosed with Parkinson's Disease. That was 11 yrs ago and blessedly, the progression of the PD has been relatively slow for me. Yes, my life changed - I had to leave a teaching career that I loved and accept certain other limitations. But with the PD reasonably under control with meds, self-expectations adjusted, and a supportive husband, life continued on a fairly normal, albeit slower, track. That was before the train that is me derailed and was sent into free-fall - like Alice down the rabbit hole - into a world where "unpredictable" is the norm, and logical cause & effect no longer exists.

In January of 2010 I took a fall that shattered my RT patella. I had a wonderful surgeon, a successful surgery, and healing was progressing on schedule. By March I'd been in PT for a few weeks & was also doing my prescribed home exercises. The derailing occurred at home, when the back of my sneaker caught on a piece of equipment and I fell backwards, crashing my RT glute into the corner of the weight bench on my way down, and my hamstring into the splayed tubular legs upon landing. To date, seven months later, those injuries have still not healed, and have morphed into CRPS, complete with perceived pain in non-injured areas as well.

One of the most frustrating aspects of this disease is the lack of public awareness. When I say I have Parkinson's, people have a frame of reference. When I say I have RSD or CRPS I get blank stares, many times even within the medical profession. My husband is among those struggling to grasp the large picture of this bizarre disease. I'm so glad I stumbled upon your very non-judgmental forum. You offer a collective wealth of knowledge served up with a healthy dose of compassion.

My current physical status is still mild compared to many of your stories. I feel my medical team is adequate, but not cutting-edge, and am hoping to link up with a doc at Columbia Presbyterian in NYC - a 90 minute drive that would probably be worth the trouble. One transferable lesson I've learned over the years is that we are all our own best advocates. However, I have no illusions; I know that despite my best efforts I may still not be able to alter the course of my own CRPS.

I have found stretching, yoga, & massage (now modified for the CRPS), to be invaluable tools for maintaining mobility & range of motion, and for prevention and relief of muscle spasms - both for the CRPS & PD. (The symptoms often overlap & I sometimes don't know which one is acting up!). So far I'm managing the hurts with N-SAIDS, muscle relaxers, and mild pain killers when necessary.

I have a 32 yr-old daughter who is a speech therapist and lives with her husband in Boston. My other daughter is 30, has a 6 yr-old son, and lives with her SO nearby. My grandson is an active presence in my life. Amazing how kids can keep us anchored and smiling!

It's not always easy for me to be on the computer because I type slowly and my injuries are in the glute area which makes it hurt to sit. It's also going to take me a while to discover how to use all the features of this site! But I will check this forum as I'm able to continue learning and sharing.

Hi. I wanted to welcome you to the boards though I am sorry for your struggles and pain. I agree with you on many levels and I think you have a very positive outlook. I think it is a good idea especially since you have 2 conditions to go to that hospital for at least a consult. Maybe if the doctors can get a team approach together to treat both conditions it will help you overall.

Thank you, Daniella. I am positive, but I'm also very scared.

Being centrally located on the Jersey Shore there are no big medical centers near me - everything is either in Phila or NYC. I'm like a deer in headlights right now, trying to find a doctor for a consult. Phila is the easier city to manage, and I already received a helpful recommendation for a Dr Getson in Marlton, NJ (outside of Phila), which I will investigate. I would be so grateful for any other specific recommendations from members.

Thank you for your welcome!

welcome