My Dad was staying with me while I recovered from my surgery I describe in the post “Preparing for the hospital.” It was my first day home and I was looking forward to sleeping in my own bed. My legs were little wobbly but I thought it was just the medication I received in the hospital. I had been sent home with a colostomy bag, which I had named “Steve the Stoma” and I had to change it on my own. As I gathered my supplies together, I realize that I don’t remember how to apply a bag… even with having a colostomy in the past and with the education the hospital.
Everything in my head was foggy. I couldn’t decipher what was a dream and what was a reality. I couldn’t control my fingers to apply my colostomy bag. Not to mention, I was experiencing double vision and had to close one eye just to see. I was feeling dystonic and overwhelmed. I couldn’t even think of the next step. I took 45 minutes to put on my first bag. I was having trouble breathing. I couldn’t take a deep breath without having chest pain.
Beginning to Fall
I had a team of home health care professionals who were helping me get back on my feet. But my dog Crash was barking aggressively at all the new people in his house. He knew I wasn’t feeling well and he had become overly protective of me. So managing him and focusing on the care being provided made for a difficult situation. My blood pressure was dangerously low. When I would stand up, everything would begin to get dark, I would hear only muffled sounds, my legs would start shaking and the next thing I knew, I would be on the floor. I was falling… I was stunned. I have never taken a tumble before the surgery.
Do I need a walker?
Blacking out is a trip. If you’ve never experienced it… you must try it… but as long as you have a huge pile of marshmallows to break your fall. It was decided that I needed a walker to help keep me upright. Then I began to understand what my fellow Parkies have described when they have to get a walker.
-It was depressing to know that I actually needed it.
-Most walkers are not fashionable… I would have to bling it out with some rhinestones or something of equal sassiness.
-I would just randomly forget that I had to use my walker. I would just get up and go. It was like my brain knew what it wanted to do, but my body hadn’t gotten the memo.
-I had no idea how to maneuver that thing. Half the time I was just carrying it. Yep, there I was walking slowly while hovering my walker a few inches off the ground… totally missing the concept.
After a couple of days at home, trying to manage my health, it became apparent that I was not getting better. I couldn’t breathe, or take a sip of water without coughing. I couldn’t brush my teeth. No one could understand what I was saying… my words just came out in a low mumble. I began to freeze abruptly. Not to mention the pain was getting worse and I had fallen 7 times. I knew what I had to do… back to the hospital, just to find out that I had a bowel obstruction and severely dehydrated.
We are all pulling for you. You are very courageous.
” For every door that opens to you
Another one may kick you in the chin
Confucius says the greatness of our being
Is that we choose to get back up again
So in between the winnin’ and the losing
You got to live your life the best you know
Cause’ prizes may not be of your choosin’
And blessings may less than you bestow” – lyrics and music by Steve Romanoff Schooner Fare Folk Group Portland Me
Conner, love it!
It really saddens me to see that you are having to go through all these problems now Allison. Never be afraid to use your cane or a walker, it is something that we really don’t want to do, I understand that, but it is much better then the alternative.
I really hope and pray that this is a temporary setback for you and pray that you will be back to your old self again very soon.
I am going to have to go for an operation on my back sometime after next September that will be at least a 5 hour surgery, I’m not really looking forward to it but it has to be done . I could have gone in already but I have decided to hold off until after my daughters wedding next September.
Take care and get better quick!
Tim, thank you for your prayers. Good Luck on your surgery!
Thank you for all you do for the PD community! Your blog is inspiring to others with Parkinson’s.
There is a new online Parkinson’s disease study is available from The Michael J. Fox Foundation by Fox Insight. Fox Insight is an online clinical study where people with Parkinson’s disease and their loved ones share information that could transform the search for better treatments.
No one understands Parkinson’s better than those living with it every day. By working together, we can help shape the future of research. Fox Insight easily collects self-reported data about health experiences from those with and without Parkinson’s in a number of ways. Eligible individuals can help researchers gain a holistic picture of the disease by participating in a genetic sub-study.
By participating in genetics research, Parkinson’s disease patients can help speed the development process toward personalized therapies that may slow or stop the disease. For more information about the study, visit https://www.fcneurology.net/parkinsons-disease-study-from-the-michael-j-fox-foundation/
Thanks for the info! If the internet can support crowd-funding, why not crowd-scientific research?
Blessings to you, Allison.
Oh Allison, I’m beginning to think you like that stupid place! 😄 I can break you out of there but it’s gotta be for good this time! 😁 I really wish I could snap my fingers and make you all better! I miss you Girlie! Get better soon so I can bring you some FROYO! XO 😘💞
Oh thank you Susie!
Keep aiming up and take one step at a time! You are an inspiration to all of us not so perky parkies.
Lois, that’s the name of the game!
Love you warrolady your a beautiful person and a true advocate for Parkinson’s. You in our prayers always hugs. Marcia and TeM Mll. Maia my service dog.
Marcia, thank you for the sweet message! Hugs and kisses to Maia!
You’re in my thoughts and prayers xxxxx
Thank you, Heather!
Love you soooo Allison💗💞💓❤️
Awww, thank you!
Dear Alison,
My heart goes out to you as do my prayers. You are an amazing woman, determined as you are brave. Take all the time you need to rebuild your strength and body. knowing we are all standing behind you and rooting for you!
Suzanne, thank you! Can’t wait to hear about your trip!
Dear Perky, We have always loved your sense of humour with your posts. My husband Dave has Parkinson’s. We wish you a speedy recovery from hospital so that you can get back home to Crash and family. You are amazing Allison, sending big hugs and kisses to you. Fran and Dave
Fran and Dave! I’m getting better every day!
Was it the DBS that you had done. If so I have some questions for you.
thank you.
Matt, yes I had DBS 8 years ago. Best decision I’ve made!
Sending love and healing vibes from Brooklyn. Hope you are back on your feet soon, without light headedness and pain.
Eli, thank you! Trying to get better for Japan!
Hi Allison,
Sorry to hear about hospital stay. Your right Parkinson’s Disease is progressive.But you have additional problems than that. I have different problems like Bipolar disorder (1984), Parkinson’s Disease(2010) and a Stroke(2017). Besides dealing with a disorder I had a stroke 7 years after being diagnosed with Parkinson’s. I was in the hospital then a rehab center for 7 months. One and half years later (Nov 2018) some things are progressing I but try to concentrate on what I can do!! Your a strong person Allison your one not to give in to PD!
Thomas, you’re right, whenever there’s other issues on top of PD, it can get messy. Hopefully you’re getting better.
Not what I was hoping for.
Bob, you and me both!
Thank you for the optimism you’re able to share in all situations!
Hope to get funny stories from Japan soon!
Véro
Vero, Fingers crossed!
Allison, I have been following your posts for a couple of years. Your ability to find humor in difficult situations is inspiring! Thanks for sharing. B
Thank you, Beverly!
Wish you recovery sooner Allison. You rock!
Feel better soon!
Prayers for speedy recovery😷🙄
Thank you 🙏🏻
Oh dear. I do hope all gets sorted and you will regain your strength and independence. I had a similar experience last year, when I was hospitalized. You begin to realise how dependent and debilitated you can become. I had to learn to use a walker, couldn’t wipe my own bum, was paralyzed from the neck down in the middle of the night and sometimes in excruciating pain from dystonia in the legs. I completely empathise with you. All the very very best! Will be praying for you.
Vera, it has definitely been an eye-opening and frightening experience you can’t care for yourself. Thank you for your prayers!
You are in my thoughts. Timo
Thank you, Timo!
I am sending you hugs and good vibrations to get healthy fast and for a long, long time. Thank you for alll you do for the PD community! Now take it easy and get yourself well! Excited to meet you in Kyoto!!
Thank you, LaDona!
Dear Alison. You are going to win this battle! You still have so much life to live, to share. Keep Kyoto as your wellness goal. I know you’ll make it. In the meantime, I’m so sorry you are going through so much. A day of feeling well will some soon. I just know it.
Donna, Thank you for your encouraging words. I will keep my wellness goal as my motivation!
I’m keeping you in my prayers as well. I’m anxious to hear the outcome of the bowel obstruction…my daughter had to have emergency surgery for one a few years ago.
Art, it was not fun, but I’m getting through it.
frank felller here, thank you for letting us all in on this experience you are having. Shirley and I are praying for you to get better and hoping to see you soon at the Y..
Hi Frank,
Thank you for your sweet card! I hope to see you guys really soon!
You’ve be in my thoughts and prayers. They will continue
Thank you, Sue!
You are very strong to share your most personal journey with your followers. I am so glad that I found your blog, and pray for continued healing and encouragement.
Thank you, Mary!
Your body is sending you the clearest message it can….. “you’ve got to stay in the hospital, rest up, decrease visitors, cuz you’ll want to be awake to greet them…”..rest and privacy is crucial Allison.
You’re only getting one opportunity to do your body right…
So true Shane!
PD is such a bully! You give him your lunch money, he takes your favorite sweater & just when you think you have come to an understanding – he gut punches you for no reason. I am so very sorry that we have to have these frightening experiences. It delights me that your sense of humor is intact, & that Crash & your family are by your side. I can relate to falling after forgetting I need a walker. The phone would ring in the morning & I would react like it was a starter’s gun. Halfway across the room I would “discover” that I couldn’t walk when I ended up in a heap on the carpet. How could decades of ambulatory success be wrong? For this month, I am operating on the theory that if I have to have PD, i’d rather be in Paris. I am staying in a small hotel near Notre Dame. Wish you could join me for a froyo or a Grand Marnier crepe in the shadow of the Eiffel Tower. I don’t know how comfortable you are when people want to tell you how strong & courageous you are, but I know, for me, that knowing I am not alone when the bully corners me on the school yard gives me great comfort. Hang in there, Baby!
Cathy, I love your description of where your life adventures have taken you. I can see it now! Thank you!
Oh my goodness, Allison. Thank you so much for updating us. We have been thinking of you constantly since your first email. Going back to the hospital is no fun. Rich can tell you that. And he understands about the colostomy bag. He had to live with it longer than he wanted. But we know you are a fighter and will deal with this and get better with each passing day. Don’t count yourself out! We believe in you.
Love you much,
Wolfpack members Rich and Claudia
Rich and Claudia,
You two are so sweet! I’m taking it day by day… trying not to think of the what if’s. Hope to see you guys soon!
Hang in there Allison. We are thinking of u🙏
Thank you, Denise!
Gd bess you you are in my prayers every day and night! You don’t know how many times you have helped me get through the day! Get better quick!
Ed, thank you for your prayers!
Sending love and prayers your way. May you heal quickly and find your inner strength. You may not be feeling “perkie” right now, but you will get there. Give yourself time to adjust ❤️🙏🌴
Karen,
Time to adjust… that’s what I have to keep in mind.
Hi I’m new to following you but love your posts, sending big hugs for a speedy recovery, 🌸💐🌷🌼
Roxy, thank you for the hugs!
You are amazing Allison. There is always something to be grateful for, no matter what the circumstances..Thoughts and prayers are with you always.o
Mark, you’ve always got to look for the brighter side of life.
Perky – prayers for a quick recovery. Stay strong!
I’m so sorry! You’ve dealt with way too much! I wish I could do something to help take away all your pain. If I were wealthy I would send you and Crash to Hawaii with a full time nurse. I think soaking up some rays and some beautiful scenery besides your hospital room could definitely make things a little easier.
Who knows, maybe I’ll win the lottery and be able to share with more Parkies like us
Brenda, I like the way you’re thinking!
How you handle your health and share it with all is incredibly inspiring! I look forward to meeting you again at WPC2019.
LaDona, fingers crossed that my health improves. I have Japan to get to!