"It's as if a great bird lives inside the stone of our days and since no sculptor can free it, it has to wait for the elements to wear us down, till it is free to fly." Mark Nepo

Saturday, April 23, 2016

Tremor of Love

Birthday, 2011 - Frank, Deb, Mark, Geoff

As with so many things in life, it's hard to identify exactly where things started to change. Hindsight is providing many clues that seem like they should have carried more importance. It's not like they were ignored, the little shifts from what had been normal. It's more like they were absorbed as part of aging and a life slightly off the rails.

The tremor in his arm became the turning point. A tremor he denied even as he was holding his arm to keep it still. That got people's attention in a way the many more subtle behavioral changes did not.

My brother, Mark, has Parkinson's Disease. He was diagnosed two weeks before his 60th birthday on April 6. That news created a whole new tremor, one that continues to ripple through both the family and each one of us individually as we adjust to a much-altered future.

Previous to Mark's March diagnosis, I could have brought little to a conversation about Parkinson's. Our paternal grandfather had it, but we were young enough when he died that Parkinson's was a disease old people got and had nothing to do with us. Michael J. Fox brought a younger more hopeful face to the disease. L-dopa I knew I bit about just from general reading. That was it.

I know much more now. Each answer I've found leaves in its wake a dozen new questions.

At first the diagnosis was a relief. An explanation for changes in my brother that were distressing and confusing to his siblings if not to him. He has maintained such an emotional and mental distance from the changes that he seems able to believe they don't exist.

The changes. So subtle at first. Cells dying in the center of his brain, parts of my little brother blinking out with each tiny death.

He grew quieter and quieter, and it was harder and harder to draw him out. He stopped smiling and joking. He'd stare into space, or stare at a face, with no emotion or expression. His grooming grew sloppy. His handwriting grew illegible. The house he was so proud of started to look like a hoarder who'd lost control lived there. The antique business he'd worked so hard to create, a life dream, slowly fell apart from lack of attention.

The weirdnesses started to accumulate to the point it was clear something was wrong. We thought depression. There was plenty of reason: losing his job, loneliness, a death that knocked his pins out from under. He swore he was not depressed. He said he was fine.

And then there was that tremor. And a diagnosis. And medication. And hope.

An answer to the question, and solutions offered.

Mark is the middle child of four. I'm the oldest, the only girl, and do not share the same father as my brothers. Our two brothers book-end him both chronologically and in their personalities. That we are close in adulthood is something of a miracle. A lot of that closeness is because of Mark.

Nearly ten years ago, he was released from prison, an experience he's written about at length. He went in angry and judgmental and disconnected from us all. He came out loving and wanting relationship, saying that was the most important thing. "We know God through our relationships with people." And he acted on that.

Mark's love became the glue that bound our family - four siblings with not-always-positive history, who loved each other, but whose lives had taken very different directions. He sang in his church choir and we would go to the holiday performances to support him. He organized brothers and my husband into a team for an annual charity golf tournament that I tagged along on. We became Team Lyons and a fixture at the tournament. He invited both brothers and their wives to surprise me for a birthday dinner one year, the first time we'd all sat at a table together for years. That birthday dinner celebration has become a tradition, and the best gift I receive year after year.

Before the diagnosis, as we watched Mark fade away, it seemed that all might be lost. With the diagnosis I felt a surge of hope that while things would be challenging, the essential Mark might be returned to us. I was ready to fight. So were our brothers. Mark's response was the opposite.

He took his medication and went to physical therapy. But he did not find a way to exercise, the one thing he was told provided the best chance of slowing the progression of the disease. For a time everything got worse: grooming, communication, attention. He stopped answering texts and his phone. His contribution to conversations was flat and one word at a time. The only thing that improved was the tremor in his arm, which grew quieter. He continued to insist he was fine.

Last weekend, younger brother and his wife, Mark's best friend, and I spent a day helping Mark in his yard and house. Despite the reason for our presence, it was a good day. Five of us working together, chatting in the spring sunshine, restoring beauty and order. SIL brought food so we ended the day on Mark's deck eating sub sandwiches and a homemade pie. We talked. To Mark. He said little. Blunt truth was spoken with as much love as possible. Mark needed to step up or he would lose everything sooner rather than later. If he wanted a voice, he needed to speak. We wanted to be there to support him, but could only do that if he told us how. When asked if he wanted to say anything, his only response was, "I love you."

We meet again on Sunday. This time all siblings will be present, and his best friend. Mark promised to come up with a plan for what he wants to happen, and how that might be put into action. I anticipate it will be a hard conversation. The other two brothers, who love Mark fiercely, have very different ideas about what helping him looks like. Decisions will need to be made about POA and medical POA and finances and estate planning - at the very least, that conversation needs to be started.

A tremor of hope shivers once more. I've talked to Mark twice this week. He said he's got his plan. He went to a support group meeting (and called to tell me). I've talked to both of our other brothers. We've all continued to inform ourselves about this disease that will ultimately take Mark from us. We're all committed to doing whatever we can to keep him as long as we can, and to help him walk this new path with as much independence and dignity as possible.

There is tension and fear and disagreement among us. There are family dynamics that threaten to overwhelm. There is Mark, trying to keep as much distance between himself and this hard hard truth as possible. And there is love. We, four siblings whose history could easily have broken their ties forever, end every conversation with, "I love you." That won't be enough to cure Mark's Parkinson's,  or to stop the losses, or to prevent the grieving that's already begun. But it is the only glue that has the power keep us together though what's to come.



I have a friend whose husband has Parkinson's. HE was diagnosed at 58. The disease has progressed rapidly. That was three years ago. He's still home and his wife is carrying the brunt of caring for him which at times is difficult.
She keeps him involved by taking yoga together. They go to weekly luncheons and have friends over. I pray that she can continue to care for him and that he continues to be without pain. The same prayer I'm praying for Mark. Take care of you. Let go and let God. Hugs. Barb

Starting Over, Accepting Changes - Maybe said...

It is easy to be there in the good times, but bad times, well, that's when family shows its real strength. You wrote this so lovingly, and even though the opinions on what to do differ, you four are there together for the long run. Bless you all.

yaya said...

I'm so sorry that this has happened. I pray your family will find a way to work with Mark and continue to give support and love. Looks like you're on the right path in that regard. I'll say prayers for Mark that he'll try to help himself also. One of our physicians started having tremors and acting strange during surgery. He'd stare at the instruments and take a long time to put things together and get the surgeries done. One surgery took him 4hrs to complete when only 20-30min. should have done it. We started a process that had one of his peers come and observe and it was decided to not renew his contract. He'd been a Doc at our facility for over 30yrs. He was 72 when this was done last year. He was very angry at the OR staff and blames us for his forced retirement. We held a party for him and he and his wife came but it was a strained celebration. He continues to come to physician meetings and seminars and I'm glad he's staying connected that way. I hope he can forgive us one day but we're patient advocates also and they are the most important people at surgery time. Keep us informed and I hope medication and hopefully some new research and developments will be available for your brother. Hugs to you!

kario said...

Oh, Deb. I'm so sorry. I have followed your journey with your brothers through the years and have loved the evolution that has happened. I do hope that Mark feels surrounded by loving, supportive people and that he remembers he has himself to thank for putting you all back together.

I wonder if you heard this interview on NPR. It was pretty compelling and perhaps the book itself, or simply the words of the author in his interview, would provide some comfort or insight.

kario said...

Ha! Forgot to post the link. Here it is ;-)


Nancy/BLissed-Out Grandma said...

Wow. That is really a tough situation. Your family's first steps--cleaning up his place and making it his responsibility to come up with a plan--sound like a good start in making it possible for him to see a way forward. Good luck to you all.

T. Powell Coltrin said...

Trying to manage things on our own, when we clearly need others, can be the end. I'm glad you all are being a presence without his permission. 😊 and it's difficult knowing just what he should be doing when his body now belongs to Parkinson's. Prayers.


Linda Myers said...

And so the long slog begins. How wonderful that you are strong and healthy and can guide and participate in this challenge for your family.

So glad I got to meet mark at the Puyallup fairgrounds during the antique show.

Thinking of you and your brothers.


lyndagrace said...

"Tremor of Love" is a beautiful writing. The range of emotions you are feeling is apparent in this piece.
What a hard thing for Mark to have to accept. He is most likely grieving the loss of his future plans and even his future self. Perhaps, intellectually he recognizes a glimmer of hope from all of the proven therapies you and his doctors have proposed.
The supportive love you give to one another is inspirational.
I wonder if he will read what you have written.

Sandi said...

Oh Deb! My heart is breaking for you, knowing what is to come. David's dad died of Parkinson's and the last years were so hard. And yet, just as you and the brothers are doing, the family stepped up, and surrounded his dad with love and the increased time was such a blessing for everyone.

It makes me very sad to think of Mark facing this disease. He was so hopeful and enthusiastic when I first met him. He has suffered enough already, in lots of ways.

I love your title, and I love how your sweet family has become so connected and supportive. What a miracle!

I'm missing you too! We need to plan a day soon. Love and a big hug to you.

Linda Reeder said...

Mark is a fortunate man to have such a fierce support team. I do so hope he is willing to take full advantage of you, his siblings.

tricia said...

This must have been therapeutic to write. Just to get it out. What a burden to bare, but also what an opportunity to build further as family. You will be nothing but a stronghold and support through whatever the future holds, I am certain. Make sure to let others be that for you, too!

Barb said...

A very sad post, Deb. I think that keeping active may be the key to holding symptoms at bay. A man we know in Breckenridge had some brains surgery for his Parkinson's and afterward was able to both bike and ski again - sports that require a great deal of balance. I don't know anything about this treatment, but we've also had a friend who just didn't want to do anything physical anymore. She seemed to go downhill fast and spent her last years in a nursing home. I hope the love you have for each other can support you all in this time of stressful decisions. Hugs from CO.

Midlife Roadtripper said...

I am saddened to read this -- and am sorry my reply is so long after you've written. Interesting how we go through life worrying about what's ahead that seems so important and then something as Mark is facing stops everything. Difficult. I wish you and your brothers a good path ahead as you take on this challenge. All of you take good care.