A Clue on the Way Forward

I mentioned in the last post that I am trying to find a philosophy or some structure to address a life that I now know will be a challenge not just to me but to my  husband and family.  I’m sure he meant to be positive, but the doctor who gave me my initial diagnosis told me not to worry, because people lived as long as 20 years with PD.  For me, the clock immediately began ticking; I’m now down to 17 years.  Now, I know that I could also get hit by a falling drone tomorrow.  There are no guarantees.  But I want to live in a way that will make me proud to look back.

Now, I had said that I didn’t want a self-improvement project and I don’t.  But while reading The Happiness Project, I found something that hit a nerve for me in a positive way.  The author, Gretchen Rubin, wrote a blog about her project and invited responses.  Some of the comments were included in her book.  This comment stopped me cold.  I read it again.  I felt it might contribute to my outlook, so much so that I took the time to learn how to highlight in my Nook.  The  quote is as follows:

Before the catastrophe, not after!  After was too late.  I was waiting to die, but I didn’t die, God isn’t ready for what little there is of me yet.  Now I see that it’s like saving money, you can’t save for when you get laid off, after you get laid off; rather, you have to save while you have a job and the money is still coming in.    Life is like that, you have to DO while you are able to think of what you want, what you like, what needs it will fill, how it will enhance your life, how it will help you to maintain you, so that you have some reserves when crunch time comes.

– from The Happiness Project
by Gretchen Rubin

I love this!  Its the first thing I’ve read which allows for rational steps forward.  It allows for me to plan ahead.  What will I be happy that I did when I could?  I don’t have a huge list but some things come to mind.  I want my husband and my children to have no doubts about how much I love them.  I haven’t finished yet but I’m looking for occasions to write each (letters last) and affirm my love and my pride.  When I can’t scream it out loud and grab them for a big hug, I want them to have proof.  It has to be over time; it’s less sincere and less special if everyone gets one at the same time.  I will be happy to know they have these.   Reading that blogger’s insight also gave me the courage to speak to my husband in a realistic way about looking forward to a time we’ll need a one story plan.  I must have done it in a positive way; yesterday, he made a game out of looking at houses that would suit that were nearby.  Its not something we need to do now which is good while we pay for college.

So there’s step one or maybe the first brick in the construction.  I need to bounce back to the faith issue next time.  Thanks for reading.

Trying to Find My Way Forward

I like this picture.  It’s so appealing and brings up memories of walking barefoot in the soft grass of summer.  As a child, I rarely put on shoes on summer break, and my feet toughened to handle the abuse I gave them.  Now,  I never go barefoot.  My right foot has been a problem for a long time and it needs the structure and support that shoes provide.

Ever since my diagnosis, I’ve been searching for something to lend a new type of structure and support to my daily life as well. No, I’m not looking for a new religion.  If you go back and read “Why Not Me?”, you’ll see I do find grounding and strength through my faith.   I don’t want the self-indulgence of an “Eat, Pray, Love” kind of exploration, not a Bucket List to achieve so I’ll feel fulfilled at the end.  I’ve read the Happiness Project but I’m not looking for a self-improvement program.

I’ve read some blogs from caregivers and “Parkies” and I learn some of what waits for me down the road, what waits for my husband.  I’m trying to find a philosophy for living each day as well as I can combined with ways to do that which incorporates the reality of my life now and how it will be in time.  I tend to be optimistic and content with a very dry sense of humor.  I’ve learned that  most everyone except friends I’ve made who share the same diagnosis are uncomfortable joking about it.

So, what would be a reasonable framework for the days ahead?  Do I make it a priority to do things with family that leave happy memories behind?  Do I try to prepare them for the challenges that lie ahead?  For me and for my family, a core structure I have decided upon is an exercise schedule.  Swimming at least twice a week and using the gym 3 days a week makes me feel better and physically stronger.  It is my job and my husband supports me making that a priority.   I have found that my circle of friends  with PD includes wildly optimistic 94 year olds and others less so.  I refuse to change the basic essence of who I am, so folks will just have to deal with my sense of humor.

If you are a Parkie, have you tried to discover what gives you the structure and support for what lies ahead?  If you’re a caregiver, I’d love to know what you wished your spouse/parent/other  would have tried, if you had all known what you know now?

Until next time…

Bad Day

Most days, I awake feeling stiff, take a pill and wait half an hour.  By then, I’m feeling better and make my way downstairs.  Today wasn’t like that.  I was stiff and my legs hurt when I awoke and the medicine didn’t make any difference.  A subsequent dose has  yet to kick in although I’m hopeful.  There are things I need and want to do today.  Its one of the mysteries of PD treatment that there are times when your body doesn’t respond to the medication.  I’m home alone so there’s no one to tell.  Even if my husband was home, I may or may not tell depending on whether it impacts him.  I hate to complain all the time.  I read a book about a woman who focused beyond her cancer and despite her pain to achieve her objectives.  It made me feel like I was a weakling.  But I realize that when I feel like this, I should not drive and put the people around me at risk.  So, for now, I wait.

How Much Should Loving Someone Cost You?

But what he doesn’t understand is that my chains are not chains,  that over the years Sally’s crippling has been a rueful blessing.  It has made her more than she was; it has let her give me more than she would ever have been able to give me healthy; it has taught me at least the alphabet of gratitude. Sid can take his guilty satisfaction in my bad luck if he pleases.  I will go on pitying him for what his addiction has failed to give him.

-from Crossing to Safety by Wallace Stegner

This quote from one of my favorite reads is from a man contemplating his marriage to a woman who has been physically challenged for many  years of their marriage.  Its a positive attitude.  What we never really hear in the book is how Sally feels about the impact of her health problems on their marriage.  Did she, like me, feel the unfairness of strapping this particular burden on her fairly young and very healthy husband?  The title of this blog is “Why not me?”  but that doesn’t mean I don’t ask why he has to suffer, too.  My step-father decided that it was his mission to take care of his wife who had her own health issues.  The burden of her care took its toll on his own health.   My husband is a very good man.  He would be like the man in the book, or like my stepfather.  But knowing how this ends for me, I wish I could choose.  We face challenges in my health but also huge strains on our finances as we deal with medical care.  We’ve tried to prepare for those but I’d prefer not to drain the money he’s worked hard to put away for retirement. Being a caregiver puts physical stresses on a spouse and emotional ones, far beyond the financial burden.  I have an idea of how that retirement should look for this wonderful man.   I’d like to save him from that time when he’s no longer my spouse but, rather, my caregiver.

Do you deal with this?  Are you someone facing medical challenges watching the strain on your spouse?  Are you that spouse/caregiver?  This is the roughest area for me to resolve. “Why not me?” I get.  “Why him?” I struggle with.  I’d be grateful to hear from either side.

Fighting Back!

That’s the plan, anyway.  It was June, 2009 when I finally discovered what was making me weak when I stood, why I could only clap with one hand, why I couldn’t sleep and often just prayed to pass away quietly.  I was so relieved to have a diagnosis that seemed treatable and was planning to be open with the news.  Soon I discovered the downside.  While most of my family and closest friends accepted the news and offered support, I discovered that for some, I vanished instantly and became A Walking Picture of Parkinson’s.  No conversation began with anything other than, “How are you feeling?” and nothing short of a long recounting of current symptoms and misery would satisfy.  Lacking the desire for that sort of communication, I stepped back from those relationships and began to more carefully guard my health information.  As I stopped talking about my Parkinson’s and, as the medicine kicked in, I looked, for the most part, like myself again.  It was easier for the family to forget that things weren’t normal, and, being the mom, I’ve tried my best to make that the truth.

So that’s where I’ve been for over a year now.

One problem.  I’m not the same.  Even though the medicine has greatly improved how I feel, I still have symptoms.  I feel foggier and weaker as it gets closer to time for the next dose.  There are times when I just feel off-balance, like constantly walking aboard a ship at sea in turbulent waters.  Because I often don’t feel good, it’s easy to NOT do the very things that might help, like exercise.  I work half-days and am often bone tired when I get home, another excuse not to work out.  I haven’t educated myself as well as I should about Parkinson’s, haven’t gotten involved with a local chapter to learn and get support.  I work for a non-profit that helps people with another disorder and completely ignore my own.  I have felt like I was just giving in and going along, prepared to accept my situation.

No more.  I’ve made a decision.  I have, with my husband’s support, decided to quit my job and fight back.  I’ve spoken to my neurologist and he’s sending me to physical therapy to learn exactly what I need to work on when I join a gym.  I’m seeing a neurologist soon who is a specialist in Parkinson’s.  I’m going to learn more and get involved.  If I do all that and my health still deteriorates at the same rate, I’ll accept that.  But not now, not anymore.  Starting now, I’m fighting back and keeping a record.