Dear Younger Self,
Let go of silly thoughts but hold onto encouraging words, thoughts and deeds – Many, many years ago, I remember my Mom’s cousin’s wife reading my palm and telling me I would experience health issues in my early 50’s. I distinctly remember asking if I would die from them and she said no, they were more like 'inconveniencies'! That idea has remained tucked away in a corner of my thoughts to this day. Try to look upon Parkinson’s disease as an inconvenience, which it tends to be!
Keep a sense of humor – Above all, try to keep some humor in your life. The card we have been dealt is not the happiest nor the easiest one in the deck but while we still have our wits about us, choose to be happy and laugh as much as possible. See and make sunshine in all that you do!
Keep a journal or diary of what your days and nights are like and what your symptoms are – This is a good habit to get into because when you are having a bad day, you can see how far you’ve come and you will recognize that you have made it through rougher times and have survived. Also, doctors always like to know this information!
Keep a documented and dated list of ALL the medicines you are taking and their frequencies as well as what you have taken in the past and jot down what they are supposed to address – Your meds are forever changing and you need to keep track of them. Dedicate a separate book to record in or design your own record sheets. Different doctors need to have this information. As you progress with this disease, and sometimes it is as a result of the meds, but you tend to forget things!
If you are financially able to, take a trip with your significant other. Don’t put it off because you never know what is behind the next door – Recently a good friend of ours whom we had shared a vacation with years earlier, pre-Parkinson’s days, suggested that the three of us should go to Cuba together. My husband appeared excited but all I felt was panic. Having Duodopa and having to have sterile conditions along with refrigeration so the gel pack cassettes can be kept at a certain temperature and not being able to swim, darkened my thoughts. I just couldn’t do it.
I wish we had taken the time to travel more after our youngest graduated. My husband’s work was very long hours and I didn’t like leaving my kids so that made doing anything else for the most part, out of the question. We went on a few road trips and we had fun doing that but I know my husband would have liked to have done more.
Make memories and take pictures with your family and loved ones. Let beauty shine through from within. Accept what the mirror reflects! –Looking back over the years I wish there were more pictures of each of us as a family before Parkinson’s disease devoured my body. There was a time when I could look proudly in the mirror and the reflection looking back at me didn’t look half bad. I’m not over-joyed by what I see now but my Dad used to always tell me “that looks are only skin deep”. I must learn accept that!
I was recently humbled after reading a message from The BC Cancer Foundation by Amy MacRae. She was on the 2020 CBC Non-Fiction Prize Shortlist for her Take a Photo Before I Leave You. It helps to put everything into perspective. You can read it here.
Write letters to our family before it is too late – Write letters to each person in your life that you care about and make it specific to them – you can add to it as you age and as different things and life lessons arise! This disease can rob you of your thoughts without warning and our loved ones need reassurance that they will remain in our heart no matter what!
Make a point of encouraging others who share the disease – If you want to make yourself feel good then encourage another person who shares this disease. Let them know they are not alone. Give them a 'reason to be'! Depression is a symptom of Parkinson’s disease and left unchecked it could have disastrous results. Don’t be afraid to reach out yourself, should you need some help with your load!
Advanced Parkinson’s does not mean you are at the end of your life as you know it – If you become troubled by the things that you hear about this disease check them out through reliable sources. For quite some time before I got Duodopa, Dr. Wile would mention that I was in the “Advanced Stage” of Parkinson’s disease. I was crushed every time I heard it because I thought he meant my time on earth was nearly up. Live in the moment and make every moment count.
That's the end of the messages but there is so much more to my life! Live fully, love deeply, and do the best you can – hang on for the ride!
Sincerely,
Wendy