Michelle Lane
Interview by Trina Stokes
As a Wife, Mother, State Advocate Coordinator for Parkinson's Action Network and President for The Parkinson's Association of Louisiana (PAL), her life is not a one of comfort but one of fortitude. Her drive and determination to help others with PD is her focus. Michelle takes her responsibilities seriously and she has made her mind up that we can beat this disease in one way or another.
I had the opportunity to talk with Michelle Lane recently after she was just given the Louis Fishman Award during the Parkinson's Action Network forum in March. This award is given for excellence in Parkinson's advocacy.
Michelle, when were you diagnosed with PD or when did you notice a warning sign?
It was New Year's Eve 1998 when I noticed my middle finger twitching. My family rented a Cabin on the Lake (Bayou Segnette State Park) and we were cooking all day preparing for the "Big New Year's Eve" meal. I joked about my finger and told my family "you guys have worked me so hard" my middle finger is twitching.
In 1999 her middle finger tremor started to worsen and then her hand began to shake on and off. She first brushed it off as stress. In early 2000 it was her Obstetrician that told her to go see a Neurologist.
The Neurologist first diagnosed the tremor as nerve damage and administered an EMG and diagnosed it as Carpel Tunnel Syndrome. Michelle went through the surgery. However, this didn't help and the tremors continued to progress. In June of 2000, one week before her 13th wedding anniversary, she was diagnosed with Parkinson's.
Please provide your thoughts about how your family copes with Parkinson's.
It hasn't been easy. My husband Ronnie, two son's Kyle (age 13), and Erik (age 9), and daughter Rachel (age 6), have all been dealing with the diagnosis. My daughter has only known me as "shaky."
When Kyle was 9 he would hold my hand and say, "I'm just trying to make it stop." This is how he was trying to cope with my Parkinson's. He helps me with everything and is a mature 13-year-old.
One evening my knees were hurting so bad that Erik said, "come Mom I will help you to bed." I tripped the other day and he gets very upset. He is always by my side trying to protect me.
If it weren't for my compassionate husband and my girlfriend Lisa to drive me around I would not go anywhere, as I often have sleep attacks and it has been unsafe for me to drive.
My advice is to be supportive not only of yourself but also of your family. Try to manage your affliction but also stay focused on your family. Be sensitive to their needs.
Parkinson's caused Michelle to retire as an accountant after 16 years of employment. The owners of the business, Joseph Scholl and Buddy Francioni have always supported Michelle by allowing her time for doctor's appointments and are now big supporters of PAL and everything Michelle does. They arranged her schedule to work a few days a week until she couldn't work any longer.
They stand behind me. It just takes a phone call. PAL just opened a new office and they graciously donated furniture. They have always been like family and I'm very grateful.
Do you have words of hope for Young Onset?
I suggest that for the newly diagnosed they seek information to educate themselves and go to the national Parkinson's organization's websites. I try to tell people not to go to unreliable websites that hyperlink to other sites because often there are personal stories that will scare the newly diagnosed instead of providing helpful education. Everyone is different and just anyone's counsel can be misleading.
Try to seek out support groups when you're ready. If you are not ready, then send a family member; they need education too and can offer wisdom from what they learn.
Michelle, please tell me about The Parkinson's Association of Louisiana.
PAL was founded in July of 2003. I met Debbie Huffman with the Parkinson Association of Mecklenburg County at the annual PAN forum. She encouraged me and provided valuable information to help us get started.
PAL had 3 fundraisers since the beginning of the year. We had 4 articles written about us in the papers and we were interviewed twice on local TV. This has really helped raise awareness and donations.
One of our large events, the Annual Grace Benson Memorial March against Parkinson's, which is held in April, was named after Grace Benson, Mr. Tom Benson wife, the owner of the New Orleans Saints.
We had over 850 people in attendance, with 650 Walkers and raised over $50,000. This is 200 more walkers and $11,000 more than last year. This money helps local support groups and we are in the process to issue our first grant within the next 6 to 8 months.
Tom invited the entire VooDoo Arena Football and New Orleans Saints players and staff. They came and signed autographs and took pictures with the participants. The coaches and staff were helpful, especially, Coach Jim Haslett and wife Beth have been two of our largest supporters for the past 2 yearsnot just monetarily but with their time and service.
In addition, Mr. Benson let PAL display our logo, mission statement and phone number on their huge monitors at the Louisiana Superdome during the entire season. The coaches and administrative staff have been extremely helpful.
Michelle, what are your hopes for a cure?
I know everyone wants a cure. My hope is to find a way of halting its progress. I want to see a drop in the percentage of the newly diagnosed, both young and old.
Also, be in control of Parkinson's; don't let it be in control of you.
Congratulations Michelle on your recent award and thank you for all your doing to beat Parkinson's. Michelle is also a team member of a top fundraising team for the Parkinson's Unity Walk the "Gulf Coast Parkies."