Seek out a doctor that specializes in our disease!

Written -Nov '06- as a response to post on a PD support group site.

"I am new to these PD yahoo groups. I am going to share my story because I think there are a lot of posters here who might benefit greatly by it. I am so surprised by the apparent lack of knowledge voiced here against the Neurologists. My doctor experiences, inregards to PD, have been exceptional. I was diagnosed so quickly that it took me about a year for it to sink in. I did seek 2nd & 3rd opinions, hoping my diagnosis was wrong.

During my 2nd pregnancy I just didn't feel right. My left leg seemed to drag a bit. The tendonitis in my wrists returned (repetitive stress as a 9-1-1 dispatcher). I also noticed what I thought was muscle loss in my left hand/wrist. I couldn't stir a wire whisk well with my left hand. I was having difficulty using a styling brush when I blow dried my hair with my left hand. My typing speed seemed to be slowing a bit in my left hand (I thought it was carpel tunnel). I was also having balance problems that I didn't have during my first pregnancy. I fell 3 times while coming down stairs. And my middle two fingers on my left hand didn't squiggle right when I sang the "Octopus" song with my pre-schooler. I knew there was something wrong but I decided to wait until after I gave birth to find out what it was. I knew that I was not going to accept any treatment for any problem while I was still pregnant.

My OB-GYN reassured me that I was "o.k." and kept telling me that `every pregnancy is different'. Her job at that point was to keep me calm until the baby was born. I ended up having a c-section so my trip to the primary care doctor was delayed a couple of weeks longer. I developed sciatica on my left side after giving birth (my leg got worse after the baby arrived). The PT I was sent to told me that there was something else going on with my left side that wasn't related to sciatica. He felt a lot of stiffness on my left lower back/upper hip area.
Once I got the all clear signal from the OB-GYN (post partum check-up) she promptly sent me to my primary care physician. My appointment with the primary care physician went quickly. He noticed right away that one shoulder didn't move when I shrugged my shoulders. He told me that I didn't have carpel tunnel (which I thought I might have developed). So off to the Neurologist I went. This appointment also went quickly. It went so quickly that I didn't believe him when he delivered the diagnosis to me. I was still a lactating mom so I didn't come back to see the neurologist after being diagnosed.

After a couple of weeks his office called me and asked me to schedule an appointment for treatment. I told them that I wasn't going to accept any drug therapy at that time due to breast feeding. I knew that there wasn't a cure for PD so my thoughts were why bother coming back? A few hours later the neurologist called back and asked if I would consider participating in clinical trials for Young Onset PD at the Parkinson's Institute in Sunnyvale. They were interested in newly diagnosed patients who had not yet started drug therapies for a study. I didn't know there was an `institute' for my disease. He told me that I would be re-evaluated by a doctor who specializes in movement disorders and that I would get a 2nd opinion. I was in their office a couple of weeks later.

My care and treatment from the Parkinson's Institute in Sunnyvale has been excellent. The staff is caring, compassionate, and dedicated. I noticed right off that they were paying attention to what I was saying & wanted to know every detail about how I was doing, feeling, etc during my appointments. They wrote everything I said down in their notes. I was impressed by their dedication to helping people with PD. They were very knowledgeable from the start. I came into their office with amazing cures and treatments I had found on-line or that friends had emailed to me. They knew about all the different stories circulating and quickly answered my questions. I agreed to participate in a clinical trial. Every test they could give me to rule out other diseases was given prior to my start in the study. I was given extra medical care without cost to me. The study I participated in ended a while back but I still go to them for treatment. I am so pleased with the level of care that I have/had received while participating in a clinical trial that I can't say enough about it.

I highly recommend that EVERYONE check into what is available to them in their area. Find a research center and see if there is a study that you are able to participate in. For those not aware, there are plenty of studies going on that don't involve taking another pill! If you aren't happy with the level of care you are receiving from your doctor, seek out a new one that specializes in our disease!!