No Joke here… a week in my life is like a month in an average person’s life. Take for example since the last time I blogged, I’m now the proud owner of two fresh batteries for my Deep Brain Stimulators. This procedure gave me further exposure to anesthesia (like I needed more) and incisions under my muscle to recover from for the following 4-6 weeks.
Then just 2 weeks later I went in for my next major surgery. I know that many of you may have lost count of my medical procedures, but this last surgery has left me with 9 exhilarating and emotional trips to the operating room in the last 10 months. But I am proud to say that as long as I have no complications, I am done with any future surgeries. YES! You read that correctly… I AM DONE WITH ONE OF THE CRAPPIEST YEARS IN MY LIFE… and what is more exciting… I survived it!
On February 22nd, I went in to have my colostomy bag reversed, which then concluded the year of my health battles. For those of you who don’t know, the best way I can explain a reversal, is they popped my intestines back into my body and stitched me up. Now I get to poop just like everyone else without a bag to collect my stool! What a dream come true.
With this year of medical catastrophes I’ve had a chance to reflect on my life. It’s like a bomb exploded destroying everything that I believed was safe, familiar and real. My life has become just trying to survive. It’s been along time since I have felt that I was thriving. I used to work out 5 days a week with boot camp, yoga and other gym exercises. Now just trying to walk my dog without losing my balance has been my challenge. I used to teach a fitness class for Parkies, now someone has been covering my class and I don’t know when I will be able to return.
I’ve spent the last 10 months living with a pattern of surgery, recover, and repeat which has put me in survival mode when many days my biggest aspiration was to shower, eat food and drink water. Being a part of the Parkinson’s world right now has been impossible. When events come up and invitations come in, I have to decline because either I will be recovering from a medical procedure, or unsure how I will be feeling that day. This blog is the one thing that’s keeping my foot in the community. Thank you again to all my readers… your support and love is felt.
As I reflected on this past year, I have come to 5 conclusions,
- I am now coming to terms that nothing will be the same. I don’t believe that my body can go through this amount of trauma and not have any residual effects.
2. The hospitals really need something like a loyalty punch card, so after every 9 surgeries you endure, you get one for free.
3. I will focus on striving not just surviving… looking for ways that I can do something positive daily for my recovery. Just today I walked Crash to the park and saw the migration of the monarch butterflies. Beautiful.
4. I will look forward to the upcoming future and remain hopeful. I know there is froyo just waiting to be eaten somewhere.
5. And last but certainly not least… remain grateful for where I am in life and the people that love me.
I just have to concentrate on small goals each day and be patient with myself, because I can see light at the end of that tunnel, although sometimes it appears as bright as a low wattage nightlight. Now, if I can just figure out how to get a building in the hospital named after me…
Allison, I can’t imagine having all those medical problems in addition to PD. I started writing a book about living with disease and disorder of Parkinson’s and Bipolar but it was to painful. Instead I’m concentrating on my PD which is in 9th year and progressing faster that I thought. I’m only 62 and I feel 92 sometimes.
I feel you Tom! Sometimes it’s just hard to get through the day. But 9 years, and you’re still doing it!
Let us strive for our “new” normal. We’ve got this!
Dianne, I will get behind that! To finding our new normal!
hi. i will be in LA mid-April. And i was wondering if there’s any parkie specific places i should see? either owned or operated by?
Bean, There’s quite a few fitness classes for Parkies and support groups but no real Parkinson’s places. Great question though!
Hi allison, you rock! Dont know how you do it. Your pretty much the human version of the energizer bunny. You take a licking but keep on ticking! Thank you for sharing, being so open and honest. It takes courage for sure. I understand that because i still try to hide my health issues from everyone. Thus hiding myself affecting other people and areas of my life. Yay therapy! Reading your posts is another form of therapy for me. Candid and inspiring, You help so many, like myself with your story. Praying you thrive in 2019!
Kristine, the energizer bunny! 🐰 that’s awesome! Thank you for your message!
Allison, you’re doing the right thing, right now ..easing back into your life, though it may change in many ways. Your health, is your priority.
You may not lead that fitness class for Parkies, however, when you’re able, maybe just a visit to the class to see some familiar faces will be beneficial for both you and the members…another contact with ‘community’.
You’ll continue to change, in your own unique way, the way a life living with Parkinson’s is perceived and the way we look at our future… ‘life’ is not over, it’s ready and willing to adapt to what lies ahead… and we’re all experiencing it together.
Shane, thank you for your words of encouragement. You’ve always been a good friend! Hope you’re well!
Allison, your strength and spirit are remarkable! And your humor is such a welcome balm to us Parkies and anyone else with illness/disease. (The surgery loyalty card is brilliant!) Thanks for being willing to share your “adventures.” I hope 2019 will be a year of striving and not just surviving for you.
Catherine, thank you! Fingers crossed!
Ms. Smith,
I figured it out. You need a publicist.
It is time to update your book or better yet, write a new one. (Then maybe they will make a Hallmark Movie about your life) Your life is and should be an inspiration to anyone facing enormous hurdles.
Not only should the hospital use that punch card they should also give you a preferential personal parking space.
Regarding my comment about needing a publicist, you should be on Oprah and/or Ellen, maybe even The Doctors. Your story is an incredible story of tenacity and endurance. Your story needs to be told beyond the confines of the Parkinson Community. Your story is a testament to Human Endurance.
Who would you like to portray you in the movie?
David, I have thought of writing a new book… just gotta how to organize my thoughts. As for a movie… Maybe Amy Adams? Thank you for your message… you got me thinking!
Wow! What a year you have had. You have survived with grace and humor in tact! You have reminded me to take each day one at a time, stay positive, and continue to find the blessings in life each day. Have a much improved 2019!
Thank you, Ruth!
Allison,
I am glad to learn that you can poop normally! I am also grateful that you continue to maintain this blog despite all the health issues you’ve had to deal with this past year. No one would blame you if you didn’t want to. You have served as an inspiration to many in the PD community as is made obvious by reading the comments you have received. Your courage, resilience and positive attitude have certainly helped me in dealing with my PD and for that I can’t thank you enough. I hope you continue to keep your “foot” in the community for a very, very long time.
John, thank you for your sweet message! I needed it today… going through pain medication withdrawals and not having the best day! Thanks for being a long time supporter!
Hi Allison. I am so sorry for all of the pain and and all that it has put you through. You are a beautiful person who has been an inspiration to me since I found out 5 years ago that all of my symptoms the previous 10 years led to the doctors concluding that I was a Parkie too. I have been praying for you since you announced your first emergency surgery last year. Please keep going forward, remain strong, and just know there are a lot of people supporting and praying for you.
I am having my battery replaced in 13 more days. This will be the third battery since April 2016 when my DBS was installed( however this is nothing compared to your last 10 months of surgeries.
Chris
Chris, I just had my 3rd replacement! My batteries have lasted about 3 years in between changes. Thank you for your prayers! I feel them!
Good luck for the future and keep smiling x
Thank you Phill!
I’VE NEVER BEEN SO HAPPY TO HEAR A POOP STORY! I LOVE WHAT A POWERFUL WOMAN YOU ARE..
Awwww, thank you Dianna! Hope you’re well!
You are truly an inspiration to me !!!!!!!!!! I thought i had had to go thru more than anyone should . l;LIke you ive had more medcal issues than just pD. like pd isnt enough????? i was dx in june of 2013 just a month shy of my 49th bday. i had been experiencing sevveral odd symptoms over the last couple year. So i had 3 good years after my dx . i stayed active ,rode my horse ,hiked and then in jan of 2017 it all came crashing down when i was given levaquin for a sinus infection that probably didn’t even need ann antibiotic at all . iwas aware that i shouldnt take cipro bu thad no iidea that it was in the same family. after 3 pills i started to get these electrical like zaps in my head , neropathy in my left hand that never been there before and its never gone away. i could barely get out of bed for a couple of weeks but my pd symptoms have never been as good as the day before i tool those 3 pills . it was lke a progressed 2 yrs. i had dbs in april of last year and its helped but now i have terrible dystonia when my med’s wear off at night.. not one dr will believe that it was the levaquin but after reading the side effects it has to be ,since 2013 ive lost 40 lbs. im 5’1 and weigh 100 lbs . i had dbs and its helped but i thik of how good i would have been if not for those 3 pills .
Robin, thank you for your message! I’ve never heard about such a reaction to an antibiotic! That’s awful. It’s amazing how sensitive our bodies are. You can’t keep doing the “what if’s”… I know it’s difficult, but just try to keep moving forward. Thinking of you! Thank you for your message!
This blog keeps more than your foot in the PD community. To those of us with PD, you are still full-in, and even more so. Your ability to survive until you thrive, through all you’ve been through, gives us faith in our abilities to survive and thrive in our lives. Until there’s a cure, there’s a community. – thank you for continuing to be such a strong person in the PD community and wishing you a fast track to thriving, stamina and wellness.
Oh Cindy! What a beautiful message. Thank you!
Perky Parkie is Pooping Positively Regular NOW – WOW! All the inspiring things were said so I felt a little push to say something a little crass. You’d better be laughing, GF! Seriously, what a shitty year – literally. But here’s the good thing: YOU. MADE. IT. And that, my friend, is good enough to get you through today…. xo Hugs, Robin
Robin, thank you! Love your pun.
Hello Allison: what a terrible year for you. I only know you as Perky Parky but I feel your pain after 5 hospital admissions (not nearly as difficult as yours). DBS coming up. It must feel to you like wave after wave coming at you. At least it’s clean water now. So glad you’re not giving up, we need your voice; thank you for writing honestly about your various ordeals. No point hiding behind a sugary facade. All the best. Casey in Canada.
Thank you Casey in Canada! Love your wave analogy! Fits how I have been feeling. Thank you for your message!
You are truly amazing and a source of inspiration! I had Breast cancer this past summer ( along wth all the Parkin stuff) and thought of you often as I was going through treatment-trying to find the humor and bright side in each day as you do. You deserve all the froyo you want!
Peggy, you’re a strong woman! And yes, I will be eating all the froyo I can handle!
Allison – You are one of the major resources I go to when I’m feeling down about my Parkinson’s. I hope you go to hopeful, positive people and places for yourself when you need to. I am struggling with continuing my job as a professor in my 9th year since diagnosis. I take your advice to set reasonable expectations for that. I know your medical events have interrupted similar things in your life. I take your honest description for inspiration. We are relatively alone in our Parkinson’s experience, except when we read your blog. You and Michael J. Fox rock. I’m glad we are on your team. Garrett
Garrett, that means so much to me that you can find a positive outlook from my words. I will keep on writing as long as you keep on moving forward!
I don’t know how you do it, but it sure as heck inspires me! I love your posts. I help take care of my mom who has Parkinson’s, so I know the caregiver side of things. However, reading from your point of view sheds so much light on this illness. Thank you for your perseverance, your great attitude, humor, dedication, and blog! God bless you!!!!!
Juliett, thank you for your sweet message and your mom is so blessed to have you in her life.
My name is Machele. I am a sister to you Because I have PD too. I have had PD almost 2 decades. I have two batteries in my chest ttwo stimulus is in my brain and I tried the Duopa but I had that removed .now I just have A hole in my stomach where it was removed. Now I’m back to trying to adjust my DBS with my medication. I sometimes feel so limp like a ragdoll that I’m like deadweight to move. My husband is my caretaker and he is worn out .
I don’t know what to do??? I have been in a wheelchair since last May.
Machele, I’m sorry to hear that you’re having so much difficulty. 2 decades is a long time for keep fighting. Just know that you’re not alone.
I do know that I am not alone. I have a very suppportive family and church family too. I know that the Lord is in control. And i definetly know that I am not. He has a plan and it is for my good and his glory. I do question it sometimes, but why not me? If it wasn’t me then it would be someone else. If the purpose in this desease is to inspire others to press on , I will try my best! Although Brutus my pug hears my cries and puts his soft hairy double chin on my feet. So sweet!
Machele, love your outlook “why not me?” Many people can’t get there. Awwww, I adore Brutus! My dog Crash is a rescue dog but in truth, he rescued me. Stay strong! Thinking of you!
WOW! I think that was my last reply too! You are so very impressive and inspiring. I don’t think, NO,I KNOW I could not be as positive as you! Thank you for giving me and others some space to appreciate that we are not in the struggle that you are! I cannot imagine the strength and attitude you have!! Heartfelt hugs and love sent your way!!
Sincerely, a true admirer! Another YOPD person, LaDona
LaDona, thank you for your comment! It made my day!q
Thank you so much for reminding us to be grateful and appreciate the little things… and thank you for sharing your journey… always with a smile, even when you don’t feel like it 🙂 Everyday brings new challenges with my sweetie… but we just play the hand we are dealt 🙂 Hugs!!
Toni, thank you for your sweet message!
Perkie -you rock! And this ol’ Parkie now has a bit more help (from u) on what being grateful is…. Two half gallons of fro-yo are waiting in my freezer to be consumed in several gratitude rituals
Roger, sounds delicious! Thank you for your comment!
stay string ! It has done you well. All my best to you .
Thank you Jillian! Going to miss you in Kyoto!
😓 get well soon. Your writing inspires. You deserve good times. Here’s to them.
Thank you Dan!
Keep going girl. You are an inspiration to me. I face my struggles alone. It is what it is for me.
All the best, I am rooting for you.
Thank you Chris!
Amazing! You are simply AMAZING! how you managed to go through all that last year and into this one is unbelievable. They should make a movie about you (I wonder who would play you). I really hope this year will be nothing but good news and no more surgeries. Take care of your self eat eat as much froyo as you want…welcome back!
Gary, I hope they pick someone spectacular to play me in the movie! Ha!
How about you? you’d do a fine job you could probably direct it too. Spectacular!!
I like where your heads at!!
Allison, you have been a shining beacon of light for me in my own Parkinson’s nightmare… I wish you all the best, and please…Stay perky!
Thank you Dan!
Allison – so glad your sense of humor and optimism weren’t removed in any of your surgeries. Welcome back. We’ve missed you.
Dave, they can’t take that away from me!
Allison, you are just amazing. Certainly none of this was out of choice, but you have handled it with such grace and determination. I hope this is now truly your road to recovery.
Linda, thank you! Fingers crossed.
After all you’ve been through, this sounds like really positive news! Let’s hope the next year will be full of positives and no setbacks. You’re an inspiration. 😘😘😘
Thank you Helen!