A warm sunny day greeted our February support group meeting. The gathering was just as welcome as the weather and we covered a wide range of subjects and concerns. First, though, I want to acknowledge the growth of our numbers. With four new members attending this meeting, our rolls have swollen to twenty!! I take, however, the mixed attitude expressed by one member the first time she walked in and saw all the women. “This is wonderful!”, she said but immediately followed up with, “This is terrible that there are so many of us”. We don’t teach, we don’t fix, we don’t lecture. We are just all together because there’s a benefit in knowing you’re not alone and having peers dealing with many of the same challenges as you are. One of our new members mentioned, how in an obituary they often say that the person died after a long struggle/battle with (whatever disease they had). She said she didn’t want to see her life that way, as a battle with disease. Maybe we all should, instead, find our best way to live with Parkinson’s Disease and keep or improve the quality and harmony of our lives.
The opening topic for this month was Relationships. Most attendees seem to be pretty open with those around them as to their diagnosis. There are others, but fewer, like me, who haven’t told very many people, It was pointed out that if tremors are your most obvious symptom, that its hard to hide. For others for whom the tremors are much smaller or non-existent, who, perhaps, have balance problems more prominently or other symptoms have more choice. One member remarked that she hasn’t told her employer yet. Someone asked if she was afraid she’d lose her job. The answer is she just doesn’t know but isn’t willing to risk it now. Another member, taking on a new job, just listed it in her bio. She figures she’ll just let them know from the start.
Some of us have noticed a change in some of our relationships once the diagnosis is revealed. Some friends and family begin to look at you differently, to no longer see you but instead your disease. That casual “hey there” you used to get in greeting from your sister-in-law instead consists of a very serious expression and a “How ARE you?”. I told and explained it to two close friends about a year ago and the next time we talked they both “remembered” that I had MS (multiple sclerosis). I think they believed, like I used to, that Parkinson’s was not a disease we middle-age women get so they corrected what they remembered to something that made sense for them. Then there is the member whose adult child agreed to come with her to her neurologist appointment (she is a widow).After the appointment, the “child” remarked that there was no need for them to return since the doctor hadn’t really addressed him/her during the visit. It hadn’t occurred to the “child” to take advantage of the visit to learn and ask questions. It is hard for our children, regardless of age, to comprehend that our needs are changing. Some of our changes impact friends and family more directly. Maybe we no longer drive at night, or at all. We can’t then make a late-evening call for a ride in the face of their car trouble or other types of aid. We are moms! We are rescuers and supporters of our children. This is a role which is hard to abandon. Not all relationships suffer in the face of our new challenges, of course. One member who has led quite an exciting and much travelled life has been moved to see her friends from all parts of the world drop everything and come visit, or arrange to meet her at a midpoint. Spouses can be great supporters as well, who move with the changes required and who sense how to know how to give you extra space and still be there to back you up.
I shared with the group this blog posting from Terri Reinhart at studiofoxhoven.com about how she wants to be treated by her friends and family:
If I ever need others to take care of me, I want people around me who will allow me to live a normal life.
· Friends and family who will get me out of the house and into the world, even if I am grumpy about it.
· Friends who will pour me a glass of wine and help me drink it, even if I’m not supposed to have it.
· Friends who will tell me bullshit stories and make me laugh.
· Friends who will make me cry.
· Friends and family who won’t mind if I tell the same stories more than once.
· Gossip. If there is a juicy story, I will want to hear it.
· Adult stories. I don’t ever want to be talked to as a child. Politics, religion – don’t stick with “safe” subjects!! I want to always have an opinion. You can even swear, if you need to.
· Friends who will get mad at me from time to time. And who will take it if I get mad at them.
· Friends who will tell me if I’m out of line.
· I want my friends and family to tell me what is going on in their lives, even if it’s painful. Don’t keep things from me so I don’t worry. You are my family and my friends and I have every right to worry about you.
· Friends and family who will hold my hand or put an arm around my shoulder.
· At least one friend who is not afraid to kiss me on the lips, even if I drool.
· Someone who will sing with me, no matter how I sound.
Being normal, being a real living human being means experiencing life. And life is both beautiful and painful. Experiencing life means experiencing disappointments and triumphs, joy and intense sadness. Sometimes it means getting really pissed off, too. And it can be delightful to get really pissed off from time to time. It’s energizing and it keeps the brain working.
I don’t want to be wrapped in cotton wool. Being safe doesn’t mean padding all the corners and keeping me from falling down. Being alive means getting hurt from time to time. I don’t ever want to be too protected. I want to be able to struggle – physically and emotionally. I want to wrestle with the real questions of life and love and friendship and what does it all mean, anyway?!
I want to keep bumping into life and crashing into love. Life does make its marks on each of us, but don’t worry. The marks you see on me?
They’re just love bruises.
The Positives of Parkinson’s
What? What positives of Parkinson’s could there possibly be? While no one suggested that we were lucky to have Parkinson’s Disease, there was discussion yesterday on some positive aspects:
- It shifts priorities in relationships and in life.
- It enriches relationships.
- It has given us a chance to meet wonderful people we probably would never have met otherwise.
- Most of us exercise much more than we would have without the diagnosis.
Odds and Ends
Conversational tidbits on ways to stay positive that might interest you:
- A counselor can be wonderful in coming to terms with your diagnosis. A couple of names were given out as counselors someone had gone to and liked.
- The book, The Reality Slap, by Russ Harris was recommended as a well-deserved read.
- Try to wake up in the morning with a positive attitude and a sense of gratitude.
- Look into mindfulness, meditation and other alternative approaches to dealing with Parkinson’s.
- See positive, up beat movies.
- Learn about the new meds and treatments for Parkinson’s Disease.
- Get involved. Maybe help with a clinical trial ( through NIH, Johns Hopkins, or Fox Trial Finder for example ).
- Consider attending the Annual PFNCA Symposium on March 28th in Falls Church. Call 703-734-1017 or go online to www.parkinsonfoundation.org for more information.
OUR NEXT MEETING IS ON MARCH 4TH.
TENTATIVE TOPIC FOR MARCH: MAKING THE MOST OF YOUR DOCTOR’S APPOINTMENT