I bet many of you are wondering how I am doing now and what really happened when I first went into surgery on September 6th, 2018. It wasn’t one thing that caused so many complications. It was a small snowball that started rolling downhill and when it gained momentum, became a huge disaster. If you need a refresher, here are my blogs documenting what I have been through and an update on how I am doing now. Enjoy!
- Where do I begin?
- Advanced Parkinson’s Overnight
- Just when I was thinking things were looking up
- How do you take your Schnitzel?
My Snowball
-My surgery was 7 hours long.
-My oxygen levels dropped to 40%.
-My Deep Brain Stimulators were off for 11 hours.
-When my stimulators were finally checked, only one side was turned on.
-I was placed in ICU.
-My chest hurt so bad I couldn’t take a deep breath.
-I couldn’t cough.
-I couldn’t swallow liquids without hacking up a lung.
-The inability to swallow caused dehydration.
-Dehydration caused my blood pressure to dramatically drop.
-I started to blackout and falling due to the drop in my blood pressure.
-I began injuring myself every time I would fall.
– I couldn’t produce enough saliva to swallow food.
-My colostomy bag was causing a high level of fluid output, which only added to my dehydration.
-Although I had a huge level of fluid loss from my colostomy bag, I could only take small sips of water to prevent aspiration.
-I couldn’t absorb my Parkinson’s medications due to my high output of fluid.
-With my Parkinson’s medications not being efficiently used, I had relentless dystonia and freezing.
-I had double vision and had to close one eye to see properly.
-This would lead to dizziness and instability.
-I could take a pill and before it could dissolve, I could see the pill (I could even read the letters on the medication) in my ostomy bag.
-Due to the pain, I had to be placed on pain medications that caused hallucinations and impaired cognitive function.
-This lead to depression and uncontrollable mood swings… i.e. telling the therapy dog Maya all my problems like she was my hairdresser.
-I had to start using a walker to prevent falls, which added to my muscle and joint weakness.
–I lost weight… like 98lbs lost weight.
-I had to drink large amounts of Ensure drinks, which would impact my absorption of my Parkinson’s medications… making them less effective.
-Because I was unable to get around without assistance, I couldn’t take care of my dog Crash.
-This was a difficult time for me. I lost my friend who was with me during the long nights. But I knew deep down that sending him to camp was the best or my recovery.
-Crash had to go back to Arizona with my parents for what they called “doggy-sleep-away-camp” with would allow me to focus on getting better and recovering.
My tiny snowball that started rolling down the hill of life became a ginormous, massive ball of destruction, knocking me down time after time. So how did I get through it and how am I doing today? Well seeing that it wasn’t just one thing that caused my health challenges, it was many… there were many steps that I had to do to get start moving in the right direction.
Getting back on my feet
-I have been out of the hospital for 5 weeks now.
-In order to keep up my hydration to prevent blackouts and falls, I have a peripherally inserted central catheter (picc line) in my arm that allows me to hook myself up to IV fluids daily.
-Bonus: I can eat whatever I want right now, to keep up my caloric intake. Now, this is what I call multitasking… eating a cupcake while getting hydrated… classic!
-I have to drink large amounts of water each day.
– I focused on one day at a time and when things got difficult, I would just look at one hour at a time.
-I added to my Wolfpack… I had a home health team, which included a physical and occupational therapist, a registered nurse to oversee my case and communicate with my doctors. I also had an ostomy nurse and a nutritionist. My wolfpack included a phlebotomist, to draw my blood at my home as needed.
-I had friends and family keeping me in their prayers and bringing me snacks and meals… made with lots of love!
-I watch a lot of
-Over time, my body began to stabilize and absorb my medications properly.
-I gained my strength back and was reunited with my dog Crash… he was a big part of me staying motivated to get healthy again.
I know that I am not completely out of the woods yet. I have some challenges that I have yet to face. But I know that I can make it with all the love and support I have been blessed to receive. Thank you for all your support, love and interest in my journey… I couldn’t have made it without my wolfpack.
We still miss you a lot at the Y. Come back to us as soon as you can. Frank and Shirley Feller
I miss you guys too! I hope to be back soon!
Two very simple words, Thank You!
Aliso, lison – just keep on doing what you’re doing, the best is yet to come. Positive vibe, peace and comfort Rog
Thank you Roger!
You are a strong person and an inspiration to many I’m sure.
Thank you Jackie!
You are nothing short of remarkable. So glad to see Crash with you again!
Thank you Dianna!
You are one tough cookie love you a bunch you have helped me get three a lot!!
Ed, thank you for seeing me as a tough cookie 🍪
Wow…..Your resilience in the face of some many hardships is what inspires those of us who are proud to be in your wolfpack. Stay strong Perky.
John, you’ve always been a big part of my Wolfpack. Thank you for your support!
May 2019 bring you renewed health and happiness. You have really been tested and have shown just how strong you are. And, with a smile on your face too. Wishing you and Crash only the best. I am a PD patiand you always give me encouragement and hope.
Andrea, thank you for your kind words!
Dear Allison,
I’m following your blog for a while now.
I’m a Romanian nurse, specialized in Parkinson, working in Italy on clinical trials. I was fascinated with Parkinson from my first experience in neurology and even wrote my final paper on nursing plan for Parkinson patients. That was in 1992.
In the meantime, science progressed, and new therapies were found, giving more options to patients in rich countries. However, medical professionals still have a lot to learn about the complexity of Parkinson and the impact it has not only on the patient but also on his family and friends.
Your blog is a learning source for me, as a nurse and as a person. You helped me help all the Parkinson patients I meet, teaching them a lot of practical things that make one’s life easier, helping their family to understand more about Parkinson and be better care givers.
You’re one tough cookie, and I have nothing but admiration for you and those surrounding you in difficult moments.
I’m happy to read that you overcome all the complications you’ve encountered in the hospital.
My heart melts from joy, when I read about your relationship with Crash and se how happy you are together. You’re a fantastic duo.
I hope your rehabilitation shall go great, and I wish you all the best.
You’re an inspiration and your posts make me a better person.
A big hug and lots of love,
Laura
Laura, you’re so sweet! Thank you for your message!
Reading this and admiring your strength and stamina. May you continue on the road to recovery. Thank you for writing this and for being such an inspiration to myself and others. Happy you and your pup have been reunited! Sending prayers and positive thoughts.❤️
Thank you, Karen!
WOW, you make me feel so healthy & lucky in comparison! I am in awe of your spunk, perseverance, & resilience. And I’m so glad that you’ve been reunited with your sweet dog. May you continue on the healing path!
Spunk! Love it! Thank you Jan!
I’m so happy you are making it and somehow recorded your journey. I shared with my PD hubby. He’s impressed too. Makes my health challenges seem more manageable also. Your humor and attitude which are your forte, still shined through. And Champ is your furry angel.💗 Merry Christmas and keep it up. You, too, are a champ.
Sheryll, Merry Christmas to you and your family!
Although I don’t know you, I’ve been worried about you! I’m glad you’re on the upswing. Self care is important! Take care ❤.
Danielle, so true about self care! Something we should practice everyday.
Thanks for sharing, Allison. We’ve been worried about you, and now we can sigh a bit knowing you are home, healing, and reunited with Crash. One step at a time. Sending love from NYC. Eli
Thank you Eli! I’m excited to get back to my life!
So pleased to see you smile and cuddle crash. You are a remarkable woman. An inspiration to us all. Xxx
Thank you Linda!
Perky parkie, I follow you not because I have PD but because my daughter has Lupus and has caused to have a liver disease and now a lung disease. , besides being sick all the time she has to work. I am sending her your blog because she can relate to u with all your ups and downs. I do have PD and I am too old for DBS Are you on amantadine? I have the same problem with my legs looking like yours. I also have swollen ankles. Dr. says don’t worry, Thank you for listening/ Margie Vancouver Island Canada
Margie, bless your daughter. Lupus is not easy to live with and having to work on top of that?! Ughhhhh! I’m taking Gocovri, which an extended Amantadine. But I hate what it does to my skin.
Allison you are simply amazing and as tough as they come. You are definitely the MVP (Most Valuable Parkie) for 2018 for the inspiration you provided and the resiliency you somehow managed to sustain. Hoping you have a smooth ride from here.
Dave, do I get a plaque or a crystal trophy for MVP? Ha! Thank you!
WOW! Just WOW!! You are truly and inspiration for so many of us PWPs.
Thank you for sharing your struggles and triumphs!!
Thank you LaDona!
I am awestruck by all that you went through and your strength to endure. You are an inspiration to us all.
Thank you Donna!
Wow. You really are navy seal tough. I am in awe. Keep fighting and get well.
Ha! Thank you John!