[indigogo]

This question was posed by a commenter in the recent Jane Brody Living Well with PD article in the New York Times.

It was comment #3 from Marie in Oregon
"How do you cope with the uncertainty of your future? Thanks."

How do you cope with an uncertain future?

We've talked a lot about coping with PD - but, specifically, how do you cope with the uncertainty it brings?

I think this has been central to the ways I've lived/wasted/enjoyed my life, and influenced all of my decisions - good and bad.

Most recently, I realized that I had often thought I would never see my daughter graduate from college 12 years after my diagnosis. But I did, and she did - last weekend.

I have also made some unfavorable financial decisions.

I know, I know - we could be hit by a bus tomorrow and die or be disabled - but we do know for certain what a death that includes PD would look like - we just don't know, at all, the time span and degree of disability.

How do you cope with the uncertainty? Me - I got a horse, and I intend to ride it into the sunset ...... (now that Elizabeth has graduated from college) ...... No time like the present.

[stevem53]

Originally Posted by indigogo

This question was posed by a commenter in the recent Jane Brody Living Well with PD article in the New York Times.

It was comment #3 from Marie in Oregon
"How do you cope with the uncertainty of your future? Thanks."

How do you cope with an uncertain future?

We've talked a lot about coping with PD - but, specifically, how do you cope with the uncertainty it brings?

I think this has been central to the ways I've lived/wasted/enjoyed my life, and influenced all of my decisions - good and bad.

Most recently, I realized that I had often thought I would never see my daughter graduate from college 12 years after my diagnosis. But I did, and she did - last weekend.

I have also made some unfavorable financial decisions.

I know, I know - we could be hit by a bus tomorrow and die or be disabled - but we do know for certain what a death that includes PD would look like - we just don't know, at all, the time span and degree of disability.

How do you cope with the uncertainty? Me - I got a horse, and I intend to ride it into the sunset ...... (now that Elizabeth has graduated from college) ...... No time like the present.

To be truthful, I only have problems with pd, when I ponder how Im going to face an uncertain future

If I think dwell on it for long enough, I can picture myself in a nursing home with a gun to my head, and in a tizzy cuz my pd is so advanced, that I dont have enough strength in my finger to pull the trigger

I went through an emotional crisis, when I started experiencing some of the things you folks wrote about years ago, when I started posting here after my dx..Dyskinesia, dystonia, off periods, freezing, falling down, insomnia, etc..I found myself getting all bent outa shape, when I started getting dyskinetic in the morning when my meds were starting to kick in, so I timed it for a week..Some mornings it lasted 5 minutes..Some mornings it was 15 - 20 minutes..The longest during that particular week was a half hour, but it feels like forever when Im going through it..Off time is the same..it feels like its never going to end..

But you got to see your daughter graduate from college..( Congrats!! )..and Im still fishing..I went out 3 times last week

I made a decision, that I am going to take this one day at a time..It is so much easier to deal with one day..and when I have those times, when I feel like I am in the eye of the storm, I promised myself that I am going to think about the things that I still can do, and will do, when the storm passes, things I can be grateful for

"Find the joy in your life"

When, I feel the fear of facing an uncertain future, I think about the message in this video, and it feels so appropriate, and so right

http://www.youtube.com/watch?v=2RlFIg0micw

[d0gma]

I loved the bucket list video--identified with it. So it rang so true that I had already I surrounded myself with positive helpful things and people and a support system. I was alone in an isolated house in Colorado and I thought I can't do this any more. The first words out of my mouth when being dx'ed were, "how do I kick its' ***?" I was not going quietly into that good night. I made this video to remind me to use what I have while I have it as the people in the video I admire did/do. The password is oldpd

Yes I get down sometimes but then I remind myself there are people a LOT worse off than I am. MJ Fox says PD is the gift that keeps taking. In a sense he is right. I wouldn't have had the courage to say ENOUGH to my abusive husband and get OUT of that marriage. I might have languished b/c breaking out of a 24 year marriage is HARD even when you're healthy.

I learned that when I dig down and recharge I am a force to be reckoned with. We all are.

PD gave me the strength and awareness to say that every day is a gift and it is not up to anyone to waste my precious days and minutes. Even bad days are gifts if I choose them to be.
PD taught me attitude is important-and that I am much stronger than I ever thought I was.
PD gave me humility and reintroduced me to compassion.
PD took away my vanity and replaced it with humor and the ability to laugh at the previously un-laughable in myself. Especially my klutzy faux pas.
PD gave me back my faith in God-I think I had to lose it to really understand how valuable it is once I got it back.
PD taught me God wouldn’t give me more than he knows I can handle.
PD gave me my family back-I had not spoken to them in over 10 years. Now I understand how incredibly selfish I was. They might not have changed as much as I have but my changes make those previous big things very small
PD taught me not to sweat the small stuff-because it is ALL SMALL STUFF.
PD gave me the compassion to reach out to people that need friends or just an ear and the patience to listen.
PD taught me how to buy a baby vacuum to get bugs.
PD taught me how to be very clever improvising and how very incredible each human brain and each human truly is.
PD gave me the understanding that mean people have worse issues than I do and now I understand it is they who have the problem so I feel sorry for them-say a prayer and go on. I no longer waste my good vibes on lost causes.
PD asked me to go visit the terminally ill because their families sometimes cannot. It gave me the strength to listen, hold hands, be there, even if I don't understand, I know now that humans need each other and I am there.
PD helped me understand the friends that abandoned me feared for their own mortality; not because of me.
PD told me how amazingly brave and kind some people were that came to me and did what must have been very difficult: to ask me how I am doing.
PD stopped all of my judging of others.
PD allows me to listen to older friends repeated stories and enjoy the joy they feel telling it without interrupting to say yes you already told me. NOW I know it's not the words that matter.
PD taught me it was okay to ask for help-and that my friends would LOVE to help me. THAT is why they are friends.
PD taught me it's okay to ask God for help when you need it - it doesn't mean you are less deserving. For some reason I thought it was okay only to ask when I didn't really need it.
PD taught me the kindness of strangers.
PD cured my perfectionism, which was a burden.
PD taught me I need to listen to my body's limits and give myself a break.
PD taught me that most anger and insensitivity isn't about me even if I am the target of the moment---it is not within my ability to fix or be hurt by. Nor is it worth my precious time.
PD gave me people to admire for their dignity under pressure.

PD most of all gave me the knowledge of my last days and in doing so the determination to enjoy today with more clarity and let drop away the chains of concern I don't need.

I accept my parents as they are and wouldn't change a thing. I now know their intent is pure therefore what once hurt because I misunderstood hurts no longer. I also learn how much smarter my parents are every year.

I can focus on my unknown horrible demise and give it power or I can take action, which kills fear. I have the wisdom of those much older, who know the means of their demise, decades sooner therefore I can temper my days with it. I can use that wisdom to make the world a better place where I might not have thought about it otherwise for too long

I watched friends die young and suddenly of cancer, aneurisms, ALS, Alzheimer's and much more. I get a chance to set things right and explore some paths I might not otherwise have taken in my mind. I have a chance to help others, give them strength. I've met some incredible friends that shored up my levees as they threatened to break and taught me the meaning of FRIEND. I know it can and may be bad but I don't know that with certainty. I don't know that they won't find a cure.

I learned that I get out of life what I foster in it. If I foster positive things, strength, humor, hope, courage then I will reap those things more so than the bad. I've been forced to do a lot of thinking and I know now that I am on a journey or a path. I may not be on the right path yet but I think that I am walking (if only mentally sometimes) that it is the journey that is important. If I give too much strength to despair and fear I will reap what I sow.

PD stopped most of me feeling sorry for myself. It taught me to look to people I admired like Helen Keller, Mother Theresa, Princess Diana, people on this forum, heroes in every day life and aspire to be better.

PD allows me to stop and pet my dogs nuzzling my leg anytime I want to. Nothing is too important not to take that simple pleasure.

PD reintroduced me to sunsets, which I used to work through or see from my office window. Now I live in CA and photograph them or just sit and enjoy.

PD gave me the courage to move to CA where I always threatened to move when times were bad in school and I thought I couldn't possibly pull out a final or write a good paper but somehow I always did. I wanted to run away to CA where things would be better and less stressful. Now I have when it's most appropriate.

Sure when I can't sleep those dark thoughts used to intrude and swirl around then unbelievably I was told I didn't have PD after 10 years of living with it.

PD gave me back my life with the wisdom of pain and fear intact, belief that prayers do come true and that it's okay to ask, belief that I am here for a purpose, the ability to help train Pets for Vets (service dogs for Iraq war vets-the wait is two years), and the ability to foster older dogs that would otherwise be killed.

PD gave me back the wonder of all things human.

Maybe my purpose is to help expose that many people are misdiagnosed or on sinemet too soon. I beat cancer at 30, I still live with recurring meningitis, and am permanently disabled with chronic pain from two spinal injuries/surgeries. But I still kick *** every day or I must look in the mirror and give myself an excuse why I give up. I believe more than ever it's the journey that's important--not the end. I no longer fear death however it comes I've seen enough to know it is never horrible but transcending.

I watched my grandfather suffer with emphysema and I wiped mucus from his mouth near the end when he could not. This was humiliating at first for him. Then we found a meeting place of minds where it was a kindness I would give anything to do because I could do so little. I was grateful for it. He understood and was too. I never had much compassion for him because he hurt my Dad in many ways over the years. While we spent that time talking he labored to tell me that his own father had left the family when he was quite young. Tired of supporting a wife and kids he took off for parts unknown and ended up dying in prison.

So while my grandfather wasn't perfect he did say something that made it all make sense. He told me that no matter what he did wrong in life HE NEVER LEFT. My righteous anger felt so petty. He had a purpose all along and he held it above all else. His wife died of diabetes when I was two (25 years before). As hard as that must have been for a man wounded by abandonment as a child he stayed and did his best.

He talked of his wife in those hours before he died, he saw her, spoke to her, asked us to let him go-go to her. We told him it was okay-he could go. I wasn't there when he went to Mildred. My dad was. I got there only minutes after, touched his face, saw the smile there. Even in what was physical pain he was at peace.

I'm so glad I saw his face that night because the funeral home in its work changed that peace so that I would not have otherwise seen it. I think PD in the way it works gives us time to put many things right and let many things go as we see fit. Some people never have that time or the insight to use it.

I told people many times I wouldn’t change having PD when I thought I had it because I would be a lesser person than I am now without that experience. I wouldn’t change thinking I had it for 10 years as I now struggle with the aftermath and my other disabilities. I would not have discovered my strength, family, friends, how to let go, searching for my purpose, or my firm belief that we ALL have one.

I posted a poem on one of my other posts but not some of the thoughts to the author's (Dylan Thomas) purpose which I find fascinating. The following link contains some thoughts on the poem. http://en.wikipedia.org/wiki/Do_not_...hat_good_night
It like bucket list seems to resonate with me. PD gave me back my tears but they are no longer for me. I thank it for all these things.

DO NOT GO GENTLE INTO THAT GOOD NIGHT

Do not go gentle into that good night,
Old age should burn and rage at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

[pkell]

I think you face an uncertain future no matter who you are or what your condition. The only thing that is really certain is sooner or later all of us will die. Really our futures are more defined than most. Maybe it's actually the certainty of our futures that is the problem. We know from diagnosis what our future holds and we know it isn't pretty, it entails loss of independence and dignity and it isn't likely we will escape it by stepping in front of a bus.

Nearly everyone's future is uncertain except for those of whose road map is already on file.

[pegleg]

Carey
I have been doing some soul-searching lately, and I don't like the thoughts running through my head. I agree, however, with Pam when she says we face an uncertain future no matter what. BUT (and a big BUT!) when you have watched your friends "progress" through this disease, and when relationships begiin to feel the strain, you cannot help but dwell on it. (or at least I can't)

There is something we need to remember - we are NOT our disease! Remember when you were working and were defined by what career or position we were in? Well, it shouldn't work that way with PD. But sometimes it sure seems so. I eat, breathe and spend 75% of my time on advocacy work - that's a bit excessive. And does it make a difference? I am not sure anymoroe.

I hear ya girlfriend - and I thank God every day that we have each other! And thanks for posting this - it's "healthy" to vent.
Peg

[pkell]

Yes Peg, it makes a difference. It makes all the difference in the world. As long as we keep trudging forward, no matter how slow or how short the steps, we are making progress, and as long as we are making progress no effort is too small to make a difference. You can close your eyes every night knowing you have made a contribution and there are actual people whose lives are the better for it.

I think it is also important to remember everyone has trials to cope with. We we tend to blame Parkinson for all our problems but some problems would be there anyway. PD doesn't give us a bye for real life, it should, but it doesn't.

Chins up everyone. Nobody ever said it was going to be fair.

[pegleg]

I needed that validated reality check. Today my pain was worse, but my "mood/attitude" improved. Go figure!

You may think this to be juvenile, but if you go around singing a "happy" tune, it greatly helps. So the tune for today is from the original movie, "Charlotte's Web" and is appropriately entitled "Chin up!"

Here are the lyrics and a YouTube link to the tune:
http://www.youtube.com/watch?v=SHtjYTM64Jo

Chin up, chin up
Everybody loves a happy face
Wear it, share it
It'll brighten up the darkest place
Twinkle, sparkle
Let a little sunshine in
You'll be on the right side
Looking at the bright side
Up with your chinny chin chin…

Chin up, chin up
Put a little laughter in your eyes
Brave it, save it
Even though you're feeling otherwise
Rise up, wise up
Make a little smile begin
You'll be happy hearted
Once you get it started
Up with your chinny chin chin!

(It's almost impossible to get it out of your head once you sing it.)
Peg

[Jaye]

You realized you were you when you started to talk and interact with others. Only later did you realize that Daddy was not the King of All the Land and Mommy wasn't the best cook in the whole word, nor yet was Mommy the Queen or Daddy the cook.... well you get the idea that as a young child you had to accept the world the way you found it, and whether your parents or imaginary parents pampered you or left you out on a snowbank to die, that was the way the world was.

So where do we get this notion that our lives OUGHT to be some certain way? Can I change Mirapex or command away all the weight I gained on it? Can I by force of will make myself drive a car responsibly without being a menace to everything on the road? Where did anyone sign on a dotted line that after I finished being a folk music star I would go on to design bridges more beautiful than the ocean itself while my true love played with our four perfect children?

Even in marriage, all one can really promise is to be faithful. Everything else is up to the four winds. A friend of mine married a guy who, on their honeymoon, fell on a steep, rocky path and hit his head, killed by Nature herself in his twenties right before her very eyes, leaving her with a child she had conceived on their wedding night. I have been married to my (second) husband for almost thirty-one years, and we're still in love, and we travel a lot together and he got prostate cancer. They removed it all, but now what? Is my uncertainty greater than my friend's? Should she be living as if her first husband were still alive? Should I assume my caregiver will always be with me?

My dreams and plans were about things that never existed, so I never lost them. I only misidentified the future. I cannot create a future that's just like I want. For the sake of inner peace, I can only receive the life given to me each day with thankfulness. I wish I would remember that.

Jaye

[GregD]

I had an uncertain future way before I had PD. There was no guarantee of where I would end up. No promises were made that I would be in the lap of luxury in my golden years even if I worked hard and saved my pennies. So how do I face an uncertian future? I look it straight in the eye and take what comes. Hopefully I have done enough to change the course of my future along the way that I won't end up in the crapper.

[pegleg]

I think we know too much about PD. And we came here (forums) seeking change - so let's keep change first and foremost in our thoughts.

Peg