2019. Another year for the books! I have been busy working on some exciting things for the Parkinson’s community, that I can’t wait to share with you all…. and yes, it does include unicorns eating frozen yogurt. But that has left me little time to blog the last couple of weeks. So please enjoy my post from last year and I am looking forward to a stellar 2020 with you all. Happy New Years!
As 2019 comes to an end, I find myself reflecting. Sitting on my couch in my flannel pajamas, holding a cup of hot tea. I can feel the warmth of my hot beverage radiating through my ceramic unicorn shaped mug (a gift from a dear friend, wink) as the scent chamomile fills the room. There’s a glow coming from my Christmas lights… I just don’t have the heart to take them down although the holiday has passed. Maybe I am hoping to hold onto the happy memories of the family and friends who I connected with during the season. My dog Crash is snuggled up next to me in a soft chenille throw blanket, recovering from our recent festivities.
I can hardly believe that another year has passed. It seems the older you get, the faster time moves. This becomes even more apparent when the reality of Parkinson’s disease is looming over your head. When you don’t know how much time you have left, you try to suck every moment out of every second that passes. I begin to reflect on the past year. My 2019 was crammed with all sorts of memories. They include stories of life lessons learned. Happy and healthy times. The loss of friends and family. The deterioration of my health. Expanding my Wolfpack. Oh! And let us not forget… basically kicking PD’s ass.
Out of all these experiences, I think of what I would like to focus on for 2020. What New Year’s resolution do I want to make? Maybe trying to reduce my intake of frozen yogurt? Ha! Who am I kidding?! I could try to blog more… try to lose 10 lbs.… put money to my retirement account… prove that unicorns do exist… or better yet, find a cure for Parkinson’s!
Throughout the holiday season, I had the honor of spending time with friends and family. Most of our conversations were about catching up. Where we’ve been? What we have seen? Who did we meet? But this year’s parties and get-togethers felt unusually heavy. Many of my friends are struggling. Whether it be their Parkinson’s disease has progressed quickly, they’re having financial difficulty, their intimate relationships have become strained as PD strips them of who they used to be, or the grief of losing loved ones, I feel their pain.
I have this overwhelming feeling of helplessness. I wish I could take away their pain. Cure them of their disease. What’s even more upsetting is they’re deteriorating from the exact same thing that I have. Which leads me to thoughts such as, “This is what’s going to happen to me.” Now I wouldn’t be the Perky Parkie if I allowed myself to be dragged into the dark side of my mind. That is a hole that’s hard to pull myself out of.
So back to my New Year’s resolution… what do I want to resolve? What in my life do I want to find a solution to? I personally believe in being the best “you” everyday. No need to wait till January 1st to make changes. So that knocks losing 10 lbs off my list. As for the unicorn thing… well that will take time and equipment that I just don’t have. And lastly, I would love to find a cure to Parkinson’s disease, but that is turning out to be extremely difficult, so I will leave that to the scientists.
This leads me to a decision NOT to make a New Year’s resolution, but to instead make a New Year’s promise. The best thing I can do for 2020 is to continue along my same path. I can offer a Kleenex when someone is crying. Be an ear when a friend needs to talk. Give hope to someone who feels like it’s hopeless. Bring a laugh and a smile wherever I go. Continue to connect with other Parkies. Blog about happy, sad, ironic, and plain old goofy moments in my life. Share a hug when someone feels alone. I will acknowledge that I can’t fix everyone’s problems but I can promise I will still be here doing what I do…
May you have a happy and healthy 2020.
Image courtesy of gubgib at FreeDigitalPhotos.net
I’ve really been blessed by reading your blog! It’s incredible what I’ve learned here that I didn’t learn from my team of physicians!
Esther,
Thank you! You’re so kind.
promise – one day at a time. Thank you for passing along such inspirational thoughts . Toger
I enjoyed reading your posting, it seems like so very long ago since I last saw you!
Why is it, no matter what Disease we have we are expected to be brave, hold our chins up high and help everyone else?
LOL!!! This is what I am and do though I do have moments of weakness! The helping others let’s me forget about me/because I find when I am stable it’s healthier for me to do this & then do some type of Adrenaline charged actually when I can handle this!
Take Care Perky Parky!
Allison you nailed it and part of me is feeling fear with you and the other part is pushing the devil out and holding onto hope for something, anything better!!! I’m only 39! I need to put me first more and work take up less of my attention, although that’s hard (I supervise Child Abuse Investigations), but I want to be there more for my almost 4 year old little girl, be more for my husband…the balance is hard! I had bilateral DBS a couple months ago and my Rytary doesn’t want to work like it’s supposed to…either lack of kick in or wearing off. I know I have to give it some time but when I can’t write or hardly move because I’m so stiff…the fight is hard. But I won’t give up hope. PD is NOT going to win. And I’m going to keep reading your blog for an example of an overcomer who’s still working and fighting the fight. I resolve to take it one day at a time!!!! Best 2020 to everyone with PD!
Shannan,
Parkinson’s basically just sucks! And getting it so early in life makes it suck double. Spending quality time with your family and friends makes more sense when a degenerative disease comes around. You find your values and goals shift. Keep on pushing forward… that’s the most important thing to focus on. Happy New Year!
Hi Allison, I couldn’t leave a general reply as there was no REPLY button, except under someone else’s comment. Is that the way it’s supposed to work? Thanks for checking, Robin
Robin,
I will take a look at that… that’s inconvenient. Usually, there is a “leave a comment” button. Thanks for the heads up!
Try stale or. Rytary didn’t work for me
Wishing you a lovely 2020! With frozen yo-yo and shared moments with yours…
Veroz,
Same to you too! Minus the fro yo. Ha!
I came upon your writings, and I was very impressed by them. It was definitely awesome to see someone who is out there writing about life with Parkinson’s from a positive and humorous point of view. We definitely need more of this. I am recently diagnosed (Nov1 officially, but I knew since early September), so I’m trying to keep active with hiking to keep the rigidity down (it helps to have just kicked Lyme disease). My writings tend to be about that. Keep up the good work… looking forward to seeing more of it.
Thank you!
Wow ! Good to know! I dedicated 2016 to my own DBS journey and that was a success in so many ways, that 2017 will be continued support group leader and community PD activist, but now I am adding a push for individual clinical trial volunteerism. There is no more excuse, now that Brain Registry and Parkinson Alliance and many others like 23 and me offer at home wisdom from our surveys.Be a part of the cure in 2017 !
Thank you for all your support in the PD community. I have a feeling 2017 is going to be a great year!
See “Captain Fantastic” for a familial distraction. Looking forward to even more gooder news on the PD front for 2017. I plan to reapply my efforts to help the cause by finding another Fox Trial in which a non Parkie can participate. Thx for sharing, love you for it, the dad. 🎉
Thanks Dad! 😘
Dear Allison, This is a beautiful blog. I just wanted to thank you for your positive attitude. It really helps a lot,
Happy New Year! ‘ Sincerely, Diana Rivers
Thank you for your kind words Diana. Happy New Year to you!
Dear Perkie, It was by chance that I landed on your blog. I started to search for information on “The Duopa Pump” procedure but I directed ( very fortunately I might add ) to your inspirational blog. Being a true believer of the idea and concept that no one is ever too old or wise not to learn how to improve one’s life, even though it’s heavily influenced by Parkinson’s Disease.
As you can tell I am referring to myself and inadvertently to my plight to live a life that does not attempt to mask or cover up the aspects that are grossly influenced from Parkinson’s Disease after 24 years.
What have I learned from my living with the enemy after so many years? Well let me begin by sharing the truth with you on what is the most amazing, most surprising, and by far the most life enriching lessons that I have learned. The lesson is that for all the hurdles that the Parkinson’s Disease community has to deal with every minute of every hour of every day their is a person that has found a way or should I say discovered the secret as it seems in certain situations to help each and every one of us. A mistake I used to make once I hit the 20 year club was to assume that no one was experiencing my new problem because this problem comes with being a member of the longevity club which members are in smaller numbers. But here is where I learned that my problems are not always solvable with black and white answers. Instead an answer that applies to me might just be coming from a person with time than I have but for who knows why or who cares why but has insight on my problem that I would expect to be handed down from a person even older than myself. So lets all reach out to each other because we are so much stronger when we are all connected. Together we will win the war and maintain our dignity, our integrity, and most of all our self respect. Oh yes, another thing I have learned is that we are all much much stronger and resilient than you can ever imagine, just keep on keeping on and when we need a hand don’t be shy be wise and ask someone younger. The answers are where you think they are not.
Now back to what I originally started my search for and that was info on ” The Duopa Pump. ” Any one out there with an opinion? I’m listening.
Thank you Dave for your comment and question. I think it’s a great topic that I haven’t touched on… so I am writing a blog post about it. It should be up by tomorrow, so keep an eye out and thank you again for your thoughts from a 24 year Parkie Professional.
For about 5 years I sensed PD was with me every second of every day. I was a prisoner of PD.
Going into year 14 PD and ME are completely integrated. The symptoms get worse but my ability to absorb the punches increases. I am one who does not feel I am fighting PD. It is what it is I am me with obvious faults.
For years now when some has asked me to comment on my PD, I tell that having a chronic and ultimately fatal disease has opened up so many doors for discovery. I read medical journals, watch Ted Talks and listen to http://www.thesciencepodcast absorbing everything I can.
My executive functioning is shot, so I can’t work at a job, but somehow I am as busy as one can be.
I say, don’t fight what you cannot beat (a little Sun Tsu – ART of WAR). Learn from your foe, and accept that fighting is futile and futility will gang up on you. If you can, integrate yourself with PD. Be a learning machine, a count your successes. They will defend you.
This is how I feel about having PD. You might disagree. You may need to feel you are fighting to win. I’ll sit this one out.
Apparently I have not mastered spelling yet and have not become ‘one’ with the keyboard. LOL.
Pete,
Great point of view! Thank you for sharing.
Happy new year Aly.thank you for all that you do.you are an inspiration to all that come in contact with you.keep up the good fight.you might talk about the ‘ten year honey moon’ of Parkinson’s .i had not heard much about it till this year my ten year,anyway have a great year.
You amaze me. My mom is 75 and has PD. She found out 5 years ago. Her sense of humor is wonderful. I’ve learned so much from her about life. You two would get along great. Thanks for teaching me so much about PD and the every day struggles. I hope this year is full of greatness and lots of froyo!!!!!
You two ladies sound delightful. Maybe one day out paths will cross and we can share a cup of fro yo!
Thanks for being here for us as we find our way through this journey. Your smile ease the path. Peace and joy to you as we find our way in the new year!
Well we have WPC2016 in Portland, Oregon to look forward to! Hope to meet you there!
I will be there!
Wishing you all good things in 2016!
Wishing u Peace Comfort and Happiness in 2016
Best wishes!
Thanks, Allison! My husband’s PD is progressing. He is going to start the process of getting the DUOPA pump very soon. Can’t find anyone that has it to ask about it. Anyone here? Anyway.. thanks for the uplifting messages from you.. but, also, another perspective from a person with PD; we caregivers have a tough time sometimes… especially the frustration of the disease. thanks again!
Have you tried the mentor program for Duopa?
Well Perkie, first of all, HAPPY NEW YEAR.
Not only will your generation of Parkies enjoy a cure for this disease, but you will be a witness to the value of perseverance in finding the cure. The daily double!!
Oh to be you with the ability, tenacity and odds to get you far into the future. I will be watching from the sidelines. I think there are many old prizes ahead for you, and some new ones like watching your peers thrive again.
HAPPY NEW YEARS!!
In the new year I wish you and all of us with PD the resilience needed to continue the fight. I also hope you continue this blog which brings its followers a lot of laughs. Finally, I hope you have a freezer full of Fro-Yo!
Thank you Allison for such a thoughtful and inspiring message to live by, as we complete 2015 and prepare to face 2016.
Let me see here.
You have resolved to make no resolutions?
Is that correct?
🙂
Happy New Year!!!
We love what you do do. Ah-rooooo! (Wolf Pack sounds). HAPPY NEW YEAR!
I stumbled upon your new year’s promise and I must say that I am so happy to find someone who is so much like ” me”. At times I felt like I had written it! Thank your positive thoughts and encouraging yet honest feelings about living with PD. I strive to start each day with a positive attitude. Some days are good …Some are not. It is comforting to talk to others who fight the same battle. I look forward to your blog in 2016! KEELA
Keela,
Glad I can offer you the comfort of knowing that you’re not alone. Thank you for your comment.
Your “2016 Promise” is well stated and something we can all commit to doing with our own circle of friends and Parkie Connections.
This is the reason why I made sure that Santa gave me a copy of Dragon voice activated software for Christmas. It’s not good when one can’t type his own name correctly.
Ha! I think you should spell your name like that from now on!
That is one of the best resolutions/promises there is. You are always the woman I look up to and admire. Even through your own struggles you find time to make time for those you care about . I wish you a fabulous year . I will help you any way possible with the “unicorn ” finding:) Love you Ally!!!
Ha! Love you, my friend!