Something Good

Parkie the WPC Mascot
Parkie the WPC Mascot

What is the WPC, some of you may ask.

WPC stands for Wilma’s Personal Computer, Wisconsin’s Pretty Cats and a score of other off the wall, made up, random stuff, but in this case, WPC stands for World Parkinson Congress.

The WPC began roughly fourteen years ago when Dr. Elias Zerhouni had a vision to see those who had been touched by PD – caregivers, patients, professionals including physicians, nursing staff, pharmaceuticals and more – come together to discuss the latest research, treatments, programs, etc., all for the cause of not only expediting a cure for PD, but how to live well with PD in the meantime.

Zerhouni (the then head of the National Institutes of Health) shared his idea with Robin Elliott (President of the US-based Parkinson’s Disease Foundation [PDF]), who asked Dr. Stanley Fahn, one of the most recognized Parkinsonologists in the world, to help launch the World Parkinson Congresses. Dr. Fahd. agreed and in 2004 the World Parkinson Coalition Inc, the organization behind each Congress was established. The first WPC was held in 2006 in Washington, DC., followed by the WPC 2010 in Glasgow, UK, the WPC 2013 in Montreal, Canada and now the fourth WPC is currently being held in Portland, OR (September 20-23).

Which all brings me to…

Tuesday night, last night, and the opening ceremonies. But let me back up a tad bit.

I was reluctant to go. It’s a six hour drive. Who would watch Finn? It’s expensive.

Excuses, excuses, excuses.

But you know what the biggest reason I was dragging my feet? The conference was about Parkinson’s disease. Yes, that’s right. But, you may ask – Isn’t that what you have?

Well, yes. But I don’t want it. And I get so tired of thinking about it. So – why would I want to go away for four days and hear nothing but Parkinson’s related subject matter?

And then…

I was offered a scholarship (from Parkinson’s Resources of Oregon via Holly Chaimov, their director) to go (which got rid of excuse #2). I was offered hotel accommodations (see excuse #2). Four people stepped up to watch Finn (excuse #3).

I accepted the scholarship, in hopes of the conference rejuvenating my spirit in regards to this little monster, especially in regards to my blog and so, here I sit, in rainy Portland, the morning after the opening ceremonies at the WPC.

Well, the rain is a welcome sight and the conference? So much more than I could have imagined.

This is now the fourth World Parkinson’s Congress. It seems this year is the year that the Congress has hit an exponential curve of growth. This year’s event boasts over 4,500 attendees and the synergy is the conversation of all present.

The goal for the evening was obvious: to make all atrendies feel welcome.

The evening opened up with a choir comprised of people with Parkinson’s disease. There was an award given for the best video presented to the WPC’s video contest. Some history of the WPC was given. Several speakers encouraged those attending but my favorites were Brian Grant, who touched on how it takes a village to deal with Parkinson’s disease, you, the person with PD, your caregiver(s), your support team, doctors, etc. And then he paused and looked out at those sitting in front of him. After a moment he added, “And you guys right here – you’re my village.”

At that moment, I realized I am a part of something bigger than myself. I may not like that I have this little monster I call PD, but the things it has taught me are invaluable. The people I have come to meet and have gotten to know because of it are a blessing beyond words. And I have a village that understands and is there for me. Thanks, Brian.

It reminds me of the verse in Genesis 50:20, where Joseph tells his brothers when they fear he will do unto them what they did unto him, “…you intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives. So then, don’t be afraid.”

Holly Chaimov, PRO Dorector
Holly Chaimov, PRO Dorector

I can now see some light again after going through a period of darkness over this little PD monster. Because I can see the good in the bad. I can see much good. And while I’ll report back on the conference some more later, I just want to thank Holly Chaimov, a part of my village, for thinking of me and encouraging me and being there.

Thanks, Holly. I hope you got your ice cream bar.

For The Caregivers

Sitting in the neurologist’s office, my questions usually get answered, my fears are often calmed, my symptoms often get addressed. However, I wonder how my husband feels sitting there, listening in, adding his two cents worth. How does he feel about what he sees happening to me daily, what he might be missing, how is he coping or going to cope?
Who questions the caregiver? Where do they go to for support? Is there someone who can put their fears to rest? What should they (the caregiver) expect?

Because I’ve never seen an article address the subject much (although, I’m sure they’re out there), I thought I’d try. Since I am not the caregiver in my situation, I have researched some material to find some answers.

So, caregivers – what could you be in for?

You are in for some changes. Your loved one is going to be changing physically and mentally day by day. Because each case differs in how PD affects the patient, it is hard to say how much change will occur or how long it might take. This could very well cause fear and understandably so.

You fear your spouse will no longer be that beauty you once fell in love with. You no longer have those deep conversations you used to have. Their concentration level just isn’t there and it’s frustrating you can no longer have those deep talks. The cognitive issues that so often accompany Parkinson’s disease can be harder to handle than the physical changes. And so often it may seem that the disease now outshines the person you once knew.

It’s okay to grieve, because what you are experiencing is worth grieving over. Someone doesn’t have to have died to be dealing with grief. I grieved for years over my oldest son taking his family away in hopes of a better job and providing more for them. No one died, but the grief was (is) real. Your loved one may not be anywhere close to passing, but still you grieve over the one you are slowly losing to a malicious disease.

When the disease is diagnosed, it can be confusing. There can be a lot of misinformation floating around in cyberspace that it is best to get your information from a qualified source* and to remember that each person will wear PD differently. You may very well face family members and friends who don’t want to believe what is happening and they will offer no help or support whatsoever. You may feel left alone to fight this battle. You may fear being alone to finish your life, a life that now looks so differently than the one you and your loved one had dreamed of.

You may realize that the support just isn’t there – as you expected/anticipated. Family and friends may stop calling or stopping by. They may not invite you to get-togethers so as they once did. They may ignore you. They just don’t understand.

Pretty dismal, it can be. But remember, everybody’s situation is different. Everybody will respond to this disease differently, both as patient and caregiver. What I wish to convey in this article is this…

We couldn’t make it without you. I know it is and it’s going to be hard. And hard is hardly the word to describe a caregiver’s situation as they care for someone with PD. But, you choose (chose) to stay through the long haul even though you could have left and gone your own way. (I personally know of people that have had their spouse leave when diagnosed with PD.) But you haven’t. You have chosen to hold tight to the promise you made at the altar or as a loyal friend. And we love you for it. And because we love you, please get some support for yourself.  Don’t go this journey alone. Move closer to  family if they can’t come to you. You do (and will) need each other.

We may get to a point where we can’t say it or show it, but we are so grateful and blessed to have you in our life and we love you for all that you are.

Our caregivers.