For those of you who have been on this road for a while, firstly words of support and recognition for the strength and defiance despite all the heavy baggage that came with PD.
I wanted to ask a favour of you - if you were to write a letter to yourself when you were diagnosed and just in your first months of dealing with the condition - what would you say?
Thank you in advance.
Dear Jim,
The progression is so slow that you'll feel just fine 3 1/2 years after diagnosis. Don't be afraid of carbidopa levodopa. You will now focus on what really matters. You will no longer sweat the small stuff. You will focus on today and worry less about tomorrow. This probably won't be fun, but there are many health problems which are a lot worse. Exercise regularly. Load up on B vitamins. Buy a coronet red hat. Enjoy your life!
Love,
Jim
If, when I were newly diagnosed, I knew then what I know now, I believe I would be leading a normal life. This, because of changes I would have made to my lifestyle, diet, and exercise regime.
Most likely, you can too.
I would admonish myself become super disciplined re diet and exercise.
Become a (distance) runner.
Dear Rebecca, You've had a lot of stress in your life, much of which You've invited in with your perfectionism, fears and lack of self love. Now PD has given you a gift: your opportunity to change that, relax and enjoy your life.
Do not take on responsibility that doesn't belong to you. Byron Katie's wisdom: "There are only three kinds of business in the universe: mine, yours, and God’s." If it's not in your hands to change, it's not your business, so don't waste energy on it. Good boundaries will be a great help to you.
Don't fight the diagnosis. It is what it is. Yes, there are many ways you can help yourself but acceptance is easier on your body and spirit than fear driven obsession with finding your way out of this.
Treat yourself as you would your dearest child. Respect yourself as you would your greatest heroine. Believe in yourself as you would your most loyal friend. No one lives forever, and it's much more important HOW you live your life than how long it lasts. Do what makes you happy, what gives you passion, what makes you feel proud.
And remember, always, that you are LOVED.
12 years ago, when I was first diagnosed, I would say “don’t panic! You will find ways of making symptoms few and will live a full and happy life”.
14+ years ago, 48 years young, I actually was upbeat when dx'd being glad it wasn't ALS or similar. Remember what you are reading, PD is more of a chronic disease, where you can live a full life and you don't die from Parkinson's you die with it.
I need to cut out as much stress as possible so I can enjoy my family as long as possible.
I can no longer be lazy about exercise and hang my clothes on the treadmill or exercise bicycle. It has to become a main part of my daily life, nothing less.
Even as things get more difficult I cannot turn into a hermit, must push myself to remain social and see friends. I will get used to being a little self-conscious about how my condition appears to others and remember that friends and people in general care about you, will help you if needed and are just happy to see you.
Always keep fighting....YOU GOT THIS!!!
Dear Self,
Why me? What does this mean? How will it change my life? How long will I have before I am really disabled?
Answers: Why not you?
The diagnosis means you will change your perspective on living. Live now, not just for the future. Enjoy the present. Change exactly what you think needs changing, if possible. Focus on exercising everyday possible, even if it is just a long walk. Eat a healthy diet. A diet you believe will help your body. Connect with caring people and people that understand your limitations and abilities.
This diagnosis of PD is scary and will rock your world for a moment. You will find a balance and a way to move forward. In some ways, your new perspective is healthy, “Live today, smile today, laugh today, find joy today because your future is now.” The term degenerative frightened me but that is the clarity. You have no choice live the best way you can and with as much grace as you can.
Cheers self, now get off your butt step out the door and move.
Wise words I very much appreciated reading today. Thank you for sharing.
Don’t Panic! The only other neurodegenerative diseases that I had heard about, and had seen for myself, were Amyotrophic Lateral Sclerosis, and Alzheimer’s Dementia. Neither of which I would want to have, and it is scary to even think about those ailments. I did not know anybody, who had PD, at diagnosis, so there is a fear of the unknown. Thankfully, what has given me hope, is that SINEMET has helped with my many symptoms, that have been so hard to live with, the last 5 years. Freezing episodes have been problematic, where I’ve had several bad falls, stiffness and cogwheel rigidity, plus resting tremors, have made getting around difficult, and handling things with my hands, clumsy! So, I am now able to deal with these symptoms better, because they are minimized somewhat, by SINEMET. So, rather than worry, and be upset, I am challenging myself to modify my motor functions to reasonably get back to as near a normal life, as I can. As far as I know, there is nothing that can do what Carbo/levodopa medicine does for PD, with ALS, or Alzheimer’s dementia. So, I do specific exercises every day, for those with PD, and feel better, along with the SINEMET, and plan to get back to living! I am not concerning myself with progression concerns, at this time, and plan to NOT give up on dealing with PD, in a positive manner, enjoying life, as best I can.
Your self evaluation 
What Do You Do About Dread and Despair?
Official Letter to my neurologist
