Page created by: Carol Sauvageot

Change is always inevitable in life, but with Parkinson's it can be one frustrating and heart wrenching change after another. When you are first diagnosed there is a huge change in your life and a big focus on how to accept this awful disease and how are you going to handle and attack it back with everything you have especially when there is no cure, only management of the disease and it's pain. This mental state and process will continue to repeat itself time and time again as your new life with Parkinson's unfolds. I often hear the joke that "Parkinson's Disease is the gift that keeps on giving" because the issues a person with PD can get tend to be monumental when you combine the motor and non motor symptoms.

In my grand scheme of things I have been lucky and PD hasn't taken nearly as much from me as it has other Parkie friends I know. However I've still suffered loss at the hands of the disease and one mourns loss when it's stripped from you and out of your control. The disease has taken my career from me, and although it's been 3 years now, I still miss it sometimes daily. It's one thing when a person retires and struggles with what to do next, however when your career is taken from you and it's out of your control it's a great loss. It was a huge loss of my identity for me. Sure I keep myself busy volunteering, exercising at the gym, taking long walks, swimming as much as I can, and finally enjoying my "forced upon me" early retirement. I can assure you that for anyone living with Parkinson's disease or any other health issues that has been forced to give up their careers, they struggle greatly with this. I think it's worse for those of us who are younger, but regardless of age it's something the disease has taken from you, it's out of your control and it's hard to accept.

Then there are the typical losses of friendships, because Parkinson's scares people and they don't know what to say or how to act around you. Very sad but true. Any major crisis or change in life tends to show you who your true friends are and getting sick or diagnosed with something like PD is no different. It's definitely confusing, frustrating, and sad and when you lose a friend from your life you love. Other typical loses PD takes from you are physical. Perhaps it takes your ability to hold a fork with food on it with ease because your tremors are bad. Maybe it takes sleep from you as most people with PD suffer from Insomnia or at the least severe fatigue. It could be your ability to perform a certain task that has been taken from you such as dancing which I can no longer do as well as I was able to a few years before. There are so many things that are taken from a person suffering from Parkinson's.

Then there's the big things that are taken from you, which makes you want to crawl in a hole and cry your face off. I have witnessed this from some of my older Parkie friends. For someone who's still young, it's like a glimpse into your future, it's heart breaking and you feel helpless. When PD hits the point where it takes the Important things from you like your independence it must feel like your entire world has come crashing down on top of you. When you're told that you can no longer be home alone, you need round the clock care, or you are no longer able to drive your car and now losing the last things you've held onto in your mental life of feeling like you still exist, and that you still have some form of an independent life, that you still have some control. I believe when Parkinson's takes from you, takes things you love, takes your independence, takes, and takes some more it is heartbreaking, and it's depressing and it's extremely hard to accept. And although I haven't gotten to the stage I'm speaking of here, THANK GOD, I know the tremendous feeling of darkness and disparity and the empty feeling inside from losing my career, and some friendships. I know what it feels like to put on a brave smiling face when you go out in public when you feel like your crying inside or have pain all day long. I know what it's like to want people to think you've got this, you're strong and a fighter and then cry yourself to sleep at night. I know what it feels like to know your family & friends love you and want what's best for you, but at the end of the day you feel entirely alone because nobody truly understands what you're feeling physically or emotionally, especially when you live in constant pain. I know what it's like to walk or limp in pain, as I sometimes do, all day long. So when I see people I've come to like who have this disease who have hit those points far beyond where I am in my PD life I do understand to some degree the anger, the resentment, the fear, the sadness they must be feeling.

But when it's all said and done, despite the losses, all the things this disease "takes" we Parkies dust ourselves off, we put on a smile even when sometimes we hurt so bad with pain and we get stubborn, we fight back with everything we have inside of us and most importantly we try to find some happiness in each day regardless of the battle we face daily. This is what keeps us going and makes us courageous in our war against Parkinson's. It's not easy and I am sure that for those friends of mine who are at the later stages and having all the big things they love and enjoy taken, it's overwhelming. But I can tell you this, I truly believe all Parkinson's people are still fighting, still finding the some happiness in their journey and although they have their moments they are amazing, are to be admired, and should be looked up to. They are brave and courageous beyond your understanding and even when Parkies are angry or sad they are still fighting with everything they have.

One of the worst things of being a "rather younger person" with Parkinson's Disease is that you become friends with alot of people that are significantly older than you. You get a realistic front row seat to the progression of the disease you have, you will watch people you have become friends with suffer, you will watch them struggle, you will hurt when they hurt and you'll be brave despite the fact that it scares you out of your mind and heart and down to your soul.

Courage can come in all forms, but when you continue to lose, and when Parkinson's disease continues to take and a person continues to smile and tries to enjoy each day to its fullest, this my friends is the face of courage because you continue to smile, you are brave, you are still strong although you may feel and be weak physically as well as mentally. These are the things Parkinson's cannot take from you, if you don't let it.

I consider myself to be one of the happiest and luckiest people around with Parkinson's. I have a loving supportive family. I have a husband who not only helps me exercise all the time, but has built me certain tools to exercise with, has never in three years missed an important doctor's appointment with my neurologist and continually encourages me to keep my life style as close to my usual routine as possible. I have the unconditional loving support from my son, Justin and my beautiful daughter in law, Jennifer. And I have so many long time true friends who are there for me on a minutes notice, who don't even flinch if I trip or fall sometimes and just accept that some days I move just a little slower then they do AND do not treat me any differently then any normal day. Thank you to my friends who don't treat me any differently, except maybe when I might need a little help walking. You, my friends, my family, have given me the courage to fight back on a daily basis. (Of course, being raised a strong Irish Catholic girl has certainly helped me too. I was basically raised by Nuns.)

Please note I am not writing this message for any donations, I write this message asking only that we all be more kind to each other on a daily basis and that we be more patient with each other. Hold the door for the elderly lady in the mall, something I know I have brought my son up to do and I know he does. I will, however, ask one thing from you all, prayers. Please keep many prayers coming my way as I continue down my new challenging way of life.