The Value of Openness: The PatientsLikeMe Blog

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one patient each month to find out more about how he or she approaches life. This month we are pleased to feature Lynette1400, a two-star member.

What are you thankful for?

A loving husband and family, wonderful friends, having had an interesting and exciting life, Social Security, Medicare, and pensions!

What do you have an abundance in your life?

A) Love and laughter.
B) Time to do all the things I want to do but didn’t have time for when I worked. Because of this, I am busier than ever.

What is your favorite holiday memory?

There have been so many. When my three children were little, we spent Christmas Day at my mother’s. After dinner, she played the piano and my Dad and the whole family, including my three brother’s families, stood around the piano and sang Christmas carols while the children played with their new toys.

It was like the Christmases in our family when I was a child. After the kitchen was cleaned up, the families would all sit around card tables and play card games. The grown-ups would patiently teach us children how to play. Then after that we would have a supper of turkey sandwiches and leftovers. Then on the long drive home we four children would all fall asleep

Describe a typical Thanksgiving in your family.

We have a traditional Thanksgiving dinner with all the fixings, which is planned for about 4 p.m., but we usually get to sit down by 5 or 6 pm. Present are my husband, me, my son and his wife, my daughter and a friend, my brother-in-law and a neighbor of his. I try to include those who do not have other plans for the day or those without family here. Everyone brings something.

It is a lovely and very tiring day for me. This year my son and daughter-in-law are having the celebration at their home, and in addition to the above guests, her parents, a girlfriend and her daughter and her brother will be there. She sets up a badminton net and the younger ones participate. She is a very good cook. I bring two pumpkin pies and probably two chocolate pecan pies.

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature chethk, a two-star member.

Where do you find joy?

I find joy by being with my family, friends, co-workers, and customers; participating in life’s daily adventures and challenges; and giving 110% effort with every task I undertake everyday.

What person do you admire most?

My wife Kate for being the mother of my two children and putting up with me.

How have you evolved since your diagnosis?

I have had Parkinson’s for 14 years. It started as a nuisance, it is now a disability. I don’t believe a person evolves when facing a progressive disease; rather, a person either resolves to fight it everyday or give in to the symptoms and wither away. I have made the choice to find a way to overcome the ever-changing symptoms of Parkinson’s everyday.

What have you learned from PatientsLikeMe?

I have learned there are others with PD who have the same emotions, fears, anger, and resolve to fight this disease until a cure is found. We do not want others to feel sorry that we have Parkinson’s, but we do appreciate their acceptance of our outward symptoms and everyone’s financial donations to medical research that will lead to a cure.

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature iowa, a two-star member.

What is your favorite time of day?

Well, when I was first diagnosed 2 1/2 years ago, it was the first five minutes [of the day]; things went downhill in succeeding minutes due to my very low stamina.

Nowadays my favorite time happens to be the first five minutes as well, but as a prelude to a wonderful day. That’s when my wonderful husband of 33 years brings me my morning cup of coffee in bed made to exact specifications. The coffee I mean. In these five minutes while I am regaining consciousness, I sip the sweet brew and reflect on how blessed I am and thank the Blesser.

And then, being an incurable Type A, I make a list of some sort, which, in retrospect, is kind of silly since being an incurable Type E (easily-distracted), I rarely stick to it. My second favorite time of day is naptime, from which simple pleasure I am rarely distracted.

What makes you laugh?

Almost anything, mostly because laughter releases endorphins and having frugal Dutch ancestors, I figure any drugs I can get for nothing is a plus. Plus, it loosens up my face, like when I began using the Neupro patch, which lists as possible side effects compulsive behavior such as A) “increased sexual desire” and B) “gambling too much.” Three minutes after I’d applied the first patch, my wonderful husband of 33 years queries expectantly, “Well??” To which I responded, “Nothing in category A, but ya wanna play Bingo?”

What would people be surprised to learn about you?

Considering what I’ve already shared, probably not a blessed thing. I’m your ordinary 52-year-old coffee-sipping, nap-loving, laughing, Bingo-playing gal. And not many of you would be surprised that I have found being diagnosed with PD to be a God-rediscovering experience, since [many of] you have had a similar experience.

How has PatientsLikeMe improved your life?

It might be too soon to know, but I suspect reading about and comparing notes with other ordinary real people will be helpful, not to mention inspiring. Inspiration is good. Right up there with laughter. And coffee. And naps.