Today is my 11th anniversary of being diagnosed with Parkinson’s disease. I don’t know how to describe it because it feels like it can’t possibly be true when I say it out loud. It seems so much longer since that day, but on the other hand, could I have really spent over a decade with this slow-moving, deteriorating sludge seeping into my life?
These years of my Parkinson’s journey have educated and shaped me into the person I am today. In honor of my anniversary, I will share with you all 11 things that I know to be true.
Simplify and Modify
When you are overwhelmed with the noise in your life, it can be helpful to find ways to simplify your life. Organize and modify based on your needs to function. This might mean you Marie-Kondo-out your closet removing items that don’t spark joy. Your goal is to eliminate the clutter, simplifying your environment. Maybe add a modification to make your day a little easier, like when my Dad installed a shower grab bar so I won’t slip getting out of the tub. I know that not everyone has a Dad that can help with home projects, so I’m willing to loan mine out… for a nominal fee of course.
Give up expectations
All through my 30’s I would ask myself. “Am I where I’m supposed to be? Should I have 2.5 children, with the Golden Retriever, standing beside my successful, but also emotionally mature husband in front of a white picket fence?” I am getting hives just thinking about it. When you have Parkinson’s for over 10 years of your life, especially in those younger years, your expectations become altered fairly quickly. You realize that it’s time to let it go. You are exactly where you should be.
Not everything is Parkinson’s
It has been fairly easy to blame anything on Parkinson’s because of how many different parts of your body are impacted. I’ve learned that while it might be easier to blame PD than to admit, it could just be aging… Yeah, I said it.
Be your own advocate
Grab your Parkinson’s by the horns and ride that bull. In the last 11 years, I have seen how important it is to remain involved in your healthcare. Educate yourself and get into those uncomfortable conversations about the progression of your Parkinson’s.
It’s just a sensation, it will pass
Sometimes when you’re not feeling well, or you’re having an “off” day, it can feel like the end of the world. You want to find immediate relief. You can’t imagine living another day with this pain. It helps me to stop and focus on my breath and remind myself that it is just a sensation… it will pass.
Remove toxic people from your life
Eliminate the people who drain your positive spirit or spew negative gunk… it’s a scientific term. Surround yourself with people who are passionate about helping you be the best you. Your “on” time is so little, be smart about who you give it to. This leads me right into the next truth…
Keep your Wolfpack strong
This includes family, friends, pets, doctors, nurses, fitness coaches, or therapists. Stack that Wolfpack with a healthy, enthusiastic crew full of zest to be your support system when things get dark.
There is no such thing as normal
I have always tried to blend into my environment. Laugh when it’s appropriate, smile when it’s not creepy, and make eye contact with occasionally blinking. But over these years, I know there is no real normal. There is just the illusion of normalcy.
Don’t compare yourself to others
I know that it’s easy to look at other Parkies and think to yourself, “Is that how I’m going to be? Is this what I have to look forward to?” Don’t do this. No two Parkies are alike. We are little snowflakes… Our Parkinson’s is unique to us… now, don’t you feel special?
Laugh at yourself
I have this walk that I sometimes do, where I bend my arms at the elbows, and my arms just hang there. It’s like my body isn’t getting the signal to relax my arms. I look like a T-Rex with this body and tiny little arms. I can only laugh at myself when I notice I am doing this. Do you know why T-Rex was so angry? Because he couldn’t do push-ups.
Movement is life
There is nothing more to say other than when you stop moving, you stop living.
Thank you for advice… I’m so new at this..my mind has been all over th place… Your advice will help me focus on these items and shut everything else out😀
Linda, Happy to help!
Good writing ✍️ a good blog is hard to find. Thank you for sharing
thanks Perky – you’re right on!
Thank you. It always helps to be reminded. .
Thank you for reading Richard!
The love of my life, Pearl Kenyon, passed away January 8, 2021 of a heart attack. She had Parkinson’s and Cancer. I still want to receive your blog because I enjoy it and I think of Pearl while I read it. Please keep up the great work!!
Oh, Dick, your comment made my day. It made me smile. I’m sorry for your loss. Pearl was blessed to have your love and support.
t Perky,
I too am “celebrating” my 11th anniversary living with PD and agree completely with your list especially the need to laugh at yourself, give up expectations, and don’t compare yourself to others. Some of my favorite quotes are: “happiness is directly proportional to acceptance and inversely proportional to expectation” Michael J Fox and “comparison is the thief of joy” Teddy Roosevelt,
John,
Love the quotes you shared. Thank you!
I may have only been along for the last 4.5, but thanks for all of your life experience and guidance in that time. Your truth makes PD easier for so many of us. Keep doing what you do. I know I appreciate the wisdom and laughs and wish you well in all you do. Take care.
Thank you, Dan.
Thanks Allison. Reading this really made me realize how wonderful you are at coping with life.
You definitely are someone I admire and have to start telling myself that “everything is okay and will be okay”
Love you
Connie,
Thank you for your kind words. I know this time is difficult for you, but it will like all other things pass. Just keep saying your goals out loud and keep moving forward.
Thanks so much! Every one of your comments resounded through me. I am slowly getting better at asking for help. I have PD and my wife has Alzheimer’s. I am so fortunate to have so much support. Your words motivate me to finish my book about cannabis and the PD journey,
George,
Time to get writing that book!
Thank you Perkie Parkie. Cool name. You say it so well., all 11 points resonate. The energy you radiate to others amazes me. Thank you for sharing; you inspire others to keep trudging. Hard to stay up when everyone (medical providers) you encounter, every thing you read, echo how bad it is and how much worse it will be, that the great robber has picked you as prey this round. Subtle, how soon the dominos fall, robbery stalks in and despite your best fight it is true what they say; this is a battle you will not win. On a positive note I have found that adapting/, going smaller often results in something more special, novel, memorable . And relationships in the end are all that matter, the only thing that spells true richness, that moments savored memories logged, love shared are the only things that PD cannot take away
Rose,
I had to stop and read your response twice. Your comment has hit the nail on the head. Thank you for sharing.
Rose,
Thank you! My Mary just had her 8th PD anniversary.
I had my 5th heart attack anniversary and remain stable, healthy.
Your kind thoughts are helping us along the road to Acceptance.
Tears are the best medicine…
Sam
Allison, as always you hit significant issues head on.
We have an 81 year old Parkie in our Gym Wolfpack and her fortitude, attitude, commitment to training and exercise and overall positive leadership and motivation are all worthy of emulation by those decades younger than her. This morning I was overly enjoying the sack and had talked myself into a day off from the gym, and then I thought of this 81 year old lass who I knew would be at the gym and I decided I would not miss seeing her. I shared this little vignette with her when I arrived at the gym and as she beamed with delight she shared with me that it was the years that was catching up with her, not the PD. Your “Truth” number three pertains. The importance of surrounding ourselves with strong and positive people can never be overstated. Your number six and seven “Truths” pertain.
Movement ensures quality of life and must be pursued aggressively. I see this every day in our Wolfpack. I see the positive difference it makes. Your “Truth” number 11 pertains.
I have spent many years working and serving in virtually every region of the world. The diverse people living in virtually every imaginable circumstance and the incredible occurrences I have seen through the years still leave me amazed and in awe. One commonality I have observed is that survivors and achievers have an abundance of faith, hope and love. Absent those, we are not truly living, just stumbling in the dark. God will always have the last word in our lives. Day by day walking in the light brings happiness even during difficulties. Martin Luther King Jr. eloquently said it this way, ” Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.”
Thank you Allison. These are all things that I needed to be reminded of today.
I have considefed all these points myself over time, especcialy over Parkie time. I agree that simplification is a smart move, but don’t give up anything good for things not so good just becausqe trimming back is simple. I remmeber telling someone a short time ago that ‘I was nerver happier than when I was broke and and aimless”. i was just “blowin in the wind” (thank you bob dylan) and yet never felt so in control at the same time. I had no eexpectations gettging pounded on each day. I took it one step further in fact. i don’t believe in hope particularly. THere is no hope.
What one Hopes to happen, does or doesn’t happen because hoping was deployed by someone along the line. Hope is just another word for “magical thinking” wherein the person who does the hopping gains temoraryh but magical control of the hoped for thing or event, hope helps as much as it wounds.
Making sure to work at kinship with non-toxic people is critidal too. FInd folks that have something to offer you, but be prepared to pay for their help with all the same attibutes they bring to you. They’ll need what you have borrowed to get through their own lives, it’s togh out here.
The ability to laugh, especially at yourself, keeps life fun enought to keep participating.
e
I was at my doctor’s office today the reults of my pre-op tests and general fitness examws .
Once I had sat down my doctor told me,, “Peter i have bad news, and unfortunatly even worse news”
I took a deep breath and proceeded, “Well give me the bad news first doc” I said.
“Well Peter” he said “your test results revealed a deadly blood disease we hadn’t notice before. You have only 24 hours to live
Oh my god I screamed “well then, what coud be worse news than that”
The doctor replied “I forgot to tell you this yesterday”
Oh, you got me, Pete! You’re the man who always has a joke. Thank you for the laughs.
What’s true? I need spelling lessons or a proof rfeader. I can hardly read my own reply.
Thanks for sharing your experience strength and hope Allison and Peter you got me one more time buddy!
A T-Rex! Finally I have a the words to describe the stupid thing I do with my arms when I get rigid. You have described it perfectly!
LJ,
Roar!
Thanks for the reminder about learning from the journey! I’m at the 5 year mark. I bet I’ve learned a few things. One is keep in touch with others who are walking the same path.
Wise words for everyone…not just those of us with PD!
Thanks again for sharing your energy…though It’s bedtime back where I live so I would rather need some magic sleeping sand 😁 Have a nice day !
Véro
Vero,
I hope you find some sleep soon!
Will work for home-made cookies & fresh strawberries.
Oh, Dad,
I saw the first strawberry stand of the season! Thought about you right away!