Spend some time with Wendy Lang, and you’ll notice what can only be called a true “joie de vivre,” a joy of living that defies any preconceived notion of aging. She’s both caring and energetic, with an adventurous spirit that has led her to travel the world from her home base in California. Can you guess her age?
What advice do you have for someone newly diagnosed with Parkinson’s disease?
Don’t hide. First, get yourself a proper diagnosis. Find a good neurologist, a movement disorder specialist. If you can’t get in right away, see someone else in the meantime. But go!
My own diagnosis was a bit unusual.
I saw on Facebook that the Michael J. Fox Foundation was looking for people to join a study, PPMI. My brother and I joined as controls— a person without Parkinson’s. We just wanted to help science, since we had Parkinson’s in the family. They gave me a DNA test and found out I have the LRRK2 mutation, as does my brother. During my second visit, they diagnosed me with Parkinson’s at UCSF.
Looking back, I can see the signs. I broke my femur in Thailand in 2008 and just kept getting slower and slower. My facial expressions were disappearing. But the minute I got medication, I felt like myself again. So, don’t be afraid of drugs.
Just bite the bullet and do whatever you can. Find out the resources and start attacking it as quickly as possible. I see a lot of people who call me and I talk to them once or twice, but then they just disappear and do nothing. They are frightened and go inside and isolate themselves and don’t do what they need to do.
What inspires you?
Other people’s successes and my own inspire me. It’s good to be involved and do as much as you can. I have met the most wonderful people. My first support group was a party in someone’s home, and there I met Carol Walton. It’s been a real surprise to me how non-judgmental and how supportive everyone is. They urge you to try anything; it doesn’t make any difference if you fail. That really inspires me.
What keeps you going?
I’ve started boxing, which I was excited to try. I joined a dance and voice class, and walk 3-5 miles, and go to pool therapy. I went to a nutritionist and readjusted my diet to reduce inflammation and take an IV of glutathione. I do tend to overdo things, so then I’ll get a massage. You need to listen to what your body is telling you.
Then, of course, there’s the camera and how it allows you to see the world. I’ve been an artist— a photographer and printmaker, all my life — of course, I do wonder about all that exposure to chemicals. Now I still do a lot of photography but mostly for pleasure.
What turns you off?
I don’t like negativity and judgment.
What do you wish more people knew about Parkinson’s?
That it’s not a disaster. Its a challenge, an opportunity to learn more about yourself, as is most of life.
Would you mind sharing your age?
Sure, I’m 80, and I’ve got a lot of living to do!
What began as a forum to tell the story of DBS therapy now extends to the community at large. People with Parkinson’s generously share their own stories — of challenges and victories — to help others realize they are not alone. You too can connect with others by sharing your own story. Contact us.
- Bettina Chavanne
- Brian Reedy
- Linda “LuLu” Woodruff
- Claude Pepin
- John Ball
- Ten Years After, by Dan Stark
- Living with Parkinson’s Disease, by Susan Mollohan
- My DBS, by Alex Abrahams
- Marlene’s Story, by Marlene Kahan
- Kip’s Story, by Kip Smith
- DBS – 9 YEARS LATER, by Claude Pepin
- David’s not waiting for the storm to pass, he’s learned to dance in the rain, by David Dorsey
- J. Gregg Riehl runs Marathon after DBS, by J. Gregg Riehl