Now that I have officially been diagnosed for 15 years, I know… I don’t look a day over 32. I’m coming to the disheartening reality that my Parkinson’s disease is progressing. I can see the deterioration in my physical health, and the medications that I have used to keep symptoms under control are now becoming unpredictable. I find myself unsure what each day will bring. I know that you only want to support and love me, but you might not know exactly how to help. I have written you a letter to give you some helpful hints as we travel this bumpy, dusty Parkie road together.
Now, let’s get into the list of helpful hints that you might find useful:
Perky Parkie’s Pieces of Advice:
-No, I am not being lazy when I fall asleep or need a nap in the afternoon. I fight fatigue every day, which prevents me from having the energy that I once had.
-Even though I can do common chores such as household duties or cleaning up the yard, it might take me longer to complete tasks, and in the end, I might need to take a break or ask for help.
-Push me to exercise every day… even if I say I don’t want to. I may have apathy and will think of every excuse not to go to my usual Pilates class. Don’t let me sit on the couch doing nothing. Movement is life.
-I have difficulty staying on task. I will start many projects or activities but not finish them all because I get sidetracked easily. Like when my dog Penny gets distracted… squirrel!
-I may not show as much emotion as you have become used to, but that doesn’t mean that I am not having fun or that I am not happy.
-Every day, my mood could be different. I might be snippy, or I might be goofy. I don’t mean to be so emotional. It’s just me fighting an internal battle with the loss of the person I used to be, and what I might become. I don’t mean to take it out on you.
-I am sorry if I run late. Sometimes I’m feeling good, but when I get ready to leave the house, I realize that I am moving at a snail’s pace and everything I’m trying to do.
-Even though I may not express it, I love you and appreciate everything that you do for me. You’re a part of my Wolfpack, and I am honored to have you in my life
-Regardless of how many times you deny it, sometimes I feel like a burden.
-I know I can move slowly, but be patient with me. I have learned to accept that many of my vacations, walks, or hikes will be spent looking at your backside while you stay 2 hops in front of me.
-When you try to make plans or appointments and I don’t sound excited about the event, don’t take it personally. I don’t know how I will feel when it’s time to go to lunch, so creating a set schedule can be challenging. I don’t want to commit to something and not be able to keep my promise.
– Don’t question my sugar addiction. It can be anything from cupcakes, Fro Yo, candy, pies, chocolate, or cookies. I will destroy a butter cake topped with strawberries and whipped cream. My mouth is seriously watering as I am typing this paragraph. I am pointing out the inability to practice self-control can become an issue with Parkinson’s, and let’s just say… they’re way worse addictions!
-If I seem unable to decide what to eat for dinner, what movie I want to see, or what candy I want to shove down my face… limit my choices. Trust me, it’s way easier with 3 types of food compared to “What do you want for dinner?”.
-Don’t let me become a recluse. Sometimes when I am feeling bad, it seems that being alone is better, but I need to step out of my box occasionally. Like when my parents are taking me whale watching in October. I am terrified of the ocean… yes, I know I live 10 minutes away from the beach. Oh, and did I mention I get motion sickness? But I’m stepping out of my comfort zone and being social, with a full pocket full of Dramamine.
-Sometimes I need to have conversations that have nothing to do with Parkinson’s or the fact that it controls many aspects of my life. I might just want to talk about that show on television that we both watch. Or catch a movie so we can talk about our favorite parts.
I am hoping that this letter has offered some clarity into my wacky and confusing world, but more importantly, I hope that you know how much your love and support mean to me. Without it, I wouldn’t be able to face these challenges with a smile on my face. Thank you.
Now, did any of these pieces of advice resonate with you and your family or friends? Or do you have a topic to add to the suggestions that I might have missed? Please comment and share…
Hi, just wanted to thank you for your letter to your family Post. You have a way of putting into words what many of us are feeling. With your permission, I’d like to use your letter as a framework to write my own. And, while I do a lot of writing in my own work, I could not say it better than you did.
I’ll keep reading as long as you keep writing! We are warriors…. and can hold the line together.
Laurie
Hello Laurie,
I would be honored if you used my blog as the framework for a letter to your family. That would be a totally awesome! You made my day.
Thanks for sharing this knowledge with me and others!! It speaks volumes to me!!
Joanne Dobbs
Happy to know that you enjoyed my blog, Joanne thanks for the comment!
I want to see the after effect of you eating the huge banana split. I bet there is a story there too.
I love me some banana split
But, you get mad at me when I call you slacker. Not to worry, we’re in this together. Love you!
Aww, Dad, love you too!
It’s been a lot of years since the days of the little Baptist church in Brea. Where you lead a small support group. But all those years you’ve been in an inspiration to many people so even if you have to do it from your couch occasionally. please keep it up for us as well as yourself.
Thanks for sharing your personal journey. Kym Cuculic.
Oh, Kym, you’re so sweet to remind me of the Brea support group and the community work I have done. Thank you for telling me to do what I can do and to keep moving forward. I hope you are doing well. Thank you for the comment! It brightened my day.
Alley, having followed you for years on this “Road less travelled”, this compendium of advice from you is one of the most important you have given, not only for us but all our significant others. I view your earlier blog “It is what it is” as a precursor to this one in many ways. While we know every case is different, some commonalities do exist so we cannot expect to always exist in an imaginary realm of “Yellow Brick Roads” leading to the Emerald City with no detours. We can however do a lot of things individually to positively impact our activities as well as our quality of life.
You have helped us through the years to identify the things which have lifted us up in so many ways and improved our quality of life. Your point of sidestepping a steady diet (metaphor intended) of PD for a more enriched life is certainly embraced. (My private short stories which I shared with you is an example where I tried to evoke the releasing of dopamine through laughter instead of the Kraken. I saw a digital smile from you Alley after reading the stories, just from your verbiage).
Hey, we are all in this together and we belong to each other with you leading the pack, Alley! I led off with an aphorism from Mark Twain, AKA Samuel Clemments, so will end with one.
“Mark Twain” means the second mark on a line that measured depth, identifying two fathoms, or 12 feet, which was a safe depth for riverboats. Let us always look for the second mark, knowing we can do much together to enhance our quality of life and safety. I like who you are Alley; Penny Lane is lucky to have a loving Mom like you. CIAO Bella!
Hi Wayne,
You have been a devoted reader for many years, and I thank you. I’ve been typing out the words that created this blog, not knowing if or who it’s reaching. But you remind me of why I continue to write even through the dark times. Because we all need a glimmer of hope when we face the Kraken!
Allison, I would say based on our blogger’s comments pertaining to your “Letter” and concomitant “Pieces of Advice” you hit a home run! Well done, Alley. You have made a tremendous positive impact on our Bloggers. You have unselfishly given us so much of your talent Alley to positively influence your devoted Parkies like you do. One cannot beg, buy or steal what you have built through your genuine hard work and caring for all of us. You have always embraced that “The best part of living is the unselfish giving”. That’s who you are,
To think I may have ever given back even a modicum of support to you compared to the colossal help, knowledge and support you have given us your bloggers through the years; I am humbled. I will always be your unfailing advocate and loyal reader. You have made a difference. You have brought a smile and many happy thoughts to me through the years, especially through the difficult times.
Thank you, Wayne! You made my day!
II have had PD for 7 years and if I might add…. Please be patient with me when I am trying to communicate with you. Please sit through my word salad and long pauses. Help me think of a word if I ask you to…
Hello Lisa,
Oh my gosh! I forgot about such a huge part of my day with my medication fluctuations and slurred speech, word finding, and speaking too fast plaguing my communication. And also, could you be more patient with us? Thank you for adding this to the advice topics!
Sending you hugs and much support through the ether.
Yes, they all resonate with me as the carer for my husband. Now I ask him specifically if he wants this, this, and this for lunch or dinner. Usually he says yes, sometimes no and we pivot. The exercise thing is a big one for us. I sometimes remind him to do something, sometimes I just say let’s do this exercise today. Slowly learning our new parameters.
You’ve been a huge help to me to realize what’s going on with him. Not that I don’t lose my patience sometimes, but we both apologize (him for making me mad and me for getting mad, lol. Just kidding). Thank you for walking ahead and charting this journey for us.
Hello Linda,
I am so happy to hear that my blog has helped you two connect. Sometimes, just listening to each other and knowing that you’re both working toward a common goal of communicating can help immensely. Thank you for the comment!
Hey Ally,
Thank you for your considerate letter. I think all of these things make you you and I love the totality of YOU! I’m sure all of your readers do as well, but you and I have a history starting from my first time I met you at Dr. Duma‘s office. I have always respected and admired you. I know you have your down days but you never let that get in the way. Thank you for always making me smile and shining your light. This is what friendship is all about the good times in the bad, being there for each other, no matter what!
Hi Michelle,
I remember that day at Dr.Duma’s office! I’m so blessed to have our life-long friendship. You’ve been there for me in the most uncertain and scary times, but with the strength and love that only a true friend can give you. I always say, you’ve taught me how to be a better friend. I would think W.W.C.D. (what would chickadee do), and then I can see a pathway through my challenges. Thank you for your support and acceptance. Love you!
Oh my goodness! This is my first time on. I’ve had Parkinson’s for 19 years now and I feel like I’m doing well. It some of your “suggestions” were spot on. Can I share this? And give you credit? Or would you rather me not?
Terri Q
Hi Terri,
It’s nice to meet you! I would love it if you were to share my blog.
Thank you!!
Beautiful, and I am so glad to understand more too. I have a coupe friend with Parkinson’s I still would love you to speak at one of my events..If you ever change your. mind let me know. I could even come get you, Im local too in HB.
Hello Cathy,
Send me a message and we will see if we can work out the details. Contact me: https://www.perkyparkie.com/contact-allison/
We all love you Allison. This is beautiful. You should consider sharing with the folks from Parkinson’s OC. A lot of Parkies and others could benefit from your Pieces of Advice.
Hi Jer-Bear,
Thank you for your sweet comments. I will reach out to Parkinson’s OC and see if it is something that would like to share.
It’s not a “goodbye” but a “see you later.” I hope and know we will hear you in another form (maybe a documentary) that will keep the Perky Parkys spirit of the your blogs going. Welcome to retirement.
Hi Chris,
I’m not going anywhere. You’re stuck with me!
You are spot on! Thank you for putting on paper what I can not.
Hello Boker,
Happy that my blog helps even if just a little.