Friday, August 12, 2011

Next Steps October 2010

A lot happens quickly over the next couple weeks with a lot of emails and conference calls with Lori. Even though we haven't met, the conversation flows easily and I get the sense that Lori is the real deal. Lori is a living example of the life we want for our patients with Parkinson's. I know I am asking a lot to add more people to Lori's team since most climbing expeditions are generally much smaller. But what an opportunity it would be for people with Parkinson's to join a team destined to empower and enrich the lives of other people living with MS and PD.

Combining an event for MS and PD has not been done to my knowledge, at least in our area. Even though I work in a clinic that offers care to people with MS and PD, we never had shared events bringing the groups together. MS and PD actually share a lot of problems common to both conditions. Once we were told that people with MS and PD don't want to mingle, going so far to say the waiting room should be separate. Worse though was when an older man on the program planning committee commented that no one would want to see a person with PD shaking and they should be rushed into a private room. What an idiotic comment. A few, including me, were quick to respond we would not have an isolation room. I wondered why someone would say such a terrible thing and thought maybe he was afraid of getting tremor and he would want to hide himself from the public. Who knows why people have these mindless biases, but Lori's climb is sure to change the way people think about MS and PD.

Lori is in conversations with Alpine Ascents International about expanding the team. We work with Lori to prepare proposals seeking pharma sponsorship from our region. Everyone I talk to about the climb is very enthusiastic about sponsorship since the climb is so unique. The climb would include a large group of people with two neurological conditions and led by the only woman with MS that has climbed the seven summits. What a promotional opportunity for the lucky company that steps up to sponsor a great idea.

I also start working to find people with PD that have or had Kilimanjaro on their bucket list. A lot of people with PD have dreams and goals that are long forgotten or dismissed after the diagnosis. I wasn't sure if I would find anyone that would want to climb a mountain as high as Kilimanjaro. I started my search by asking people that were physically active and connected to the PD community as well as getting the word out in our clinic.

I had recently been introduced to Nan Little from Seattle by Bill Bell. Bill thought I might be the person who could help Nan find space at our hospital for some tandem bikes to start a cycling program for PD. Nan has PD and was using cycling to keep her PD symptoms under control. Nan learned about the positive impact of cycling for PD  thanks to a research study performed by Jay Alberts. Jay is a colleague that we worked with at the Cleveland Clinic. We left Cleveland before Jay had finished his inital exercise research study. I remember seeing a few of our patients in clinic who participated in Jay's study. I was told by my patients that the rapid pedaling was a lot of hard work but worth it since symptoms seemed better for hours after the pedaling. One patient was having more muscle cramps so we worked on a plan to help reduce cramps so he could continue pedaling. Another patient thought he needed less medicine. No matter what the mechanism, we always believed exercise was good for both the body and brain and had always recommended exercise to our patients, even when our colleagues discouraged exercise. Jay's study would hopefully strengthen this message for people with PD to exercise.

As I learned more about Nan and her cycling connections to PD, I contacted Nan to see if she knew anyone with PD that would be interested in climbing Kilimanjaro, put the word out to other groups and informed our administration.

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