I guess the best way to do this is to start typing. I am sorry for my unexplained absence from life itself. My surgery was on September 6th. Although I admit that I didn’t know what condition my body would be in until I woke up from anesthesia, nothing prepared me for the challenges that I would face.
First, before I begin, let me forewarn you that some of the details are a little fuzzy. In fact, I am still having the residual cognitive impairment, from the trauma of my surgery which I detailed in my last blog, “Preparing for the hospital.” I went into the procedure optimistic but admittedly timorous. I truly believed that everything would work out.
As I thought of my unknown future laying on the gurney, I think about how wrong Hollywood has got it. Most movies portray surgery in a rosy light, but I know the truth. I wouldn’t be waking up from my slumber to a room filled with flowers and balloons, with my fresh dewy skin glowing, my hair brushed softly to the side, I slowly smile with my shiny lip gloss and quietly say, “How did it go?”
No, the type of surgery I was going through was all about fear, needles, blood, urine, colostomy bags, abdominal incisions, and pain. It’s about dry mouth, chapped lips, body odor, confusion, and brain fog. I have always heard of the complications that Parkies can experience from anesthesia and I was just about to go into my 7thvsurgery in 7 months.
It’s now time… My nervous butterflies turn into bats. I say my goodbyes to my family and slowly drift off into the abyss. What I can first remember coming out of surgery is the pain. I feel contorted severe cramping. I call out for my mom She approaches my bed relays the details, I find out that my surgery lasted a little over 7 hours, I had many adhesions from previous procedures which added to my already challenging situation.
During the lengthy surgery, they had to turn off my Deep Brain Stimulators, which make a huge difference in controlling my symptoms. It wasn’t until over 11 hours after they turned my DBS off did I decide to check it. For whatever reason, only one side of my bilateral device was on. The moment I hit the “on” button, my muscles had begun to relax.
The next day, I had noticed it was difficult for me to take a deep breath. It actually hurt to expand my lungs. I was shallow breathing and my oxygen levels went down 40%. I was admitted into the Intensive Care Unit, and began testing. They found fluid around my heart and lungs and could only describe it as my “heart took a hit”. I stay in the ICU for 3 days on respiratory therapy. When I was released on the 13th, my Dad took over… rotating parents is very helpful when you live alone.
I was taking it slow, but my body was just not recovering. I had chest pain, blurred, double vision, I couldn’t control my motor function and I couldn’t swallow fluid without coughing. Then it happened… I blacked out in the bathroom, where my Dad found me. I was about to experience what it was like to have advanced Parkinson’s disease.
Thank you for informing. I should know what’s going on.
I use music to spark up my workouts. I’d be glad to share some tunes w/ U if you want.
You are very courageous. My thoughts are with you. Godspeed
” For every door that opens to you
another one may hit you in the chin
Confucius says the meaning of our being
is that we choose to get back up again….” from “Roots and Wings”
Lyrics and music by Steve Romanoff Portland Maine Schooner Fare folk group
Also see TED talk Mark Pollock/ Simone George
Conner Moore Saco Maine
Conner, thank you for the suggestion. I will check it out!
Wow! I’ve never seen so many comments on one blog. Hope and pray you are progressing each day. I used this phrase during my darkest days and I repeat it again and again, until I feel peace of mind. “It is only by faith in the all powerful Christ, that I can be superior to circumstances, and victorious over all the evil forces that would destroy me”
Hope it helps you as it has helped me.
Thank you Annie for passing along the phrase that you use for difficult times. It’s helpful.
Bless your heart as we say in South Carolina You face incredible challenges with such sang froid. You are a hero (heroine) to me. Prayers for you, Allison
And thanks for telling us about it
Thank you, Winnie!
We are sooooooooovery glad to finally hear from you via your blog. Thank you Lord for bringing Alison through this struggle. Keep her safe and give her strength to continue her recovery so she can return to her many friends and family.
Bill and I have been “dancing up a storm” in the Y class and enjoying this new form of exercise. we miss you tho and hope for your return when you body is ready to meet with all of us again. Stay strong……as I know you will.
Hi Linda and Bill,
I am so happy to hear that you are attending the YMCA class and enjoying a different form of exercise. I think of you guys often an hope to see you soon!
Dear Allison-
I am so sorry to hear of all the challenges that advanced PD has visited upon you like so many plagues of ancient Egypt. I, also, have advanced PD and was just fitted for an electric wheel chair. I still have good days. when I take my doctor’s advice & try to get as many stamps on my passport as I can, while I still can. Or as I tell my kids, if I have to have a broken leg, would I rather have that at home in Riverside, or abroad in Paris? So I flew to Paris this morning. Travel agrees with me. I arrived for dinner at the brasserie tonight in a wheel chair, but was able to walk half a block back to the hotel after dessert, pushing the chair. HUGE! As we both know, for every ride on a cresting wave, with PD, there is a trough following close behind… I am so happy for you to have your parents, fur baby, wolf pack, froyo (I share that addiction) & indomitable spirit to draw on in these times that try a perky parkie’s soul. Hang in there! Aaauuuuuuuu!
Cathy, I love that you are taking advantage of your good days and living life to its fullest! Eat some froyo for me!
I’m so sorry it’s neen such a rough road. I just know with your amazing positivity, you will be up and moving in no time!
Thank you, Lori! I miss seeing you and my friend Copper. Give him kisses and scratches for me!
I get so much inspiration from your blogs and I was missing you but I knew you would not desert us – fellow Parkies. Thank God you are on the mend. Please take care. We all need you!
You’re right Lois, I wouldn’t just desert you guys! I just appreciate all the love I feel from my Wolfpack. Thank you!
Praying you will heal quickly! Being a parkie with DBS I know it takes a while, but I can pray anyway.
Thank you, Joanne!
Allison,
Everyone at your Y class are concerned for you and ask about your progress weekly..
So sorry to hear your having such a rough time.
Doing my best to sub for you and am in awe at how hard they try ….attendance varies …one week 7 next week 3…hoping
that is normal ….
Although I don’t know you well, I am also in awe of your spirit and courage…
Always
Sharon
Sharon Boies
Artistic Director
All the Right Moves and More
4001 a Birch St #A
Newport Beach, California 92660
atrmsb@aol.com
949 422 2842
Sharon, I am sorry I haven’t been in contact but it warms my heart to hear that you have stuck it out and I have only heard good things about your class. Yes, attendance will vary, that is completely normal. I am hoping to be back soon. Fingers crossed! Thank you for all you do!
We are so pleased to finally see a post from our favorite ninja. (Actually, you’re the only ninja we know but I’m sure you’d be our favorite even if we knew others.) We have been so concerned for you the past few weeks, and rightfully so it seems. It sounds like you are on the road to recovery now, which we hope and pray is the case. The world is a better place with you in it, inspiring the rest of us mere mortals with your incredible strength and attitude. Love and prayers,
Jan & Ken
Thank you, Jan and Ken! I am so glad that I am the one and only ninja that you know…
While you are in surgery having ? done- I had my dbs batteries changed. I thought pain was my puppy bouncing o my incisions. May you live long and know the feeling when your best puppy gives you a doggy kiss-gently because he realizes you are hurt.
Kevin, I’m happy to hear that you’re doing well… but watch out for that dog!
You’re so courageous and such a fighter !!! I send you all the energy I can.
Vero, I can feel the energy your sending! Thank you!
May you wake up tomorrow to bright sunny skies! I’m sorry you’re having a rough time. I’m praying for your wellness! Thinking of you
Thank you, Brenda!
Allison –
All of us, at the Davis Phinney Foundation, send you big (gentle) hugs from Colorado! We’re holding you in our hearts and thoughts. Get well soon, girlfriend. You are missed!! XOXOXO Polly and team
Thank you for all your love and support my friends at the Davis Phinney Foundation! Miss you Polly!
Hi Alison
Been thinking about you so it’s fantastic to read your blog again. So sorry things have been so rough. Jeez! You continue to inspire many many people. Bet Crash is in seventh heaven having you back. Thank you for your brave and wise words. Get well soon!
Karen
Thank you for your message, Karen. Taking it day by day!
Hi Allison,
I’m so sorry you are going through all of this. It’s not fair! I, too, have yopd and my heart aches for you and your struggles. You just keep keepin’ On and know that we are hoping for nothing but the best for you!
Thank you, Amy! I’m just trying to push forward!
Oh Allison, I’m so sorry to hear that you have been going through all of this. I’m sending you healing thoughts and a big hug.
I hope you are back to your perky self as soon as possible! Much love to you…
Thank you, Ana for all the love!
Hi Allison, I was so worried. I called and left a message at work and Wendy called back. I had not heard from anyone about food requests so thought something must be up. I have continued to pray for you. I am sorry to hear of your challenges but am glad you are hanging in there. May God bring you back to health and bless you my sweet friend. Let me know if I can help. I have been blessed with much business in my reverse mortgage business so am working very long hours helping people.. I hope to see your smiling face soon! Cathy Hall
Thank you, Cathy! It’s been a lot more challenging then I anticipated… but then again, how can you anticipate a surgery that even the surgeon didn’t know what he was going to do until he could get in there? Thank you for your concern. Hope to see you soon!
Wow, Allison! It’s so great to hear from you. We have been thinking about you since DAY 1. We are so sorry you’ve had som setbacks. Some of it sounds pretty scary to us. You don’t say in your blog, but do you think the surgery did what it was supposed to do? We are praying for a full recovery for you.
Rich, too, had some setbacks from his knee replacement surgery. He had a bad reaction to heparin and ended up staying 22 days in the hospital. He has been home about 3 weeks now.
Please continue to keep us updated. We really care about you.
Love
Rich and Claudia McGann
Oh no! Rich, I am sorry to hear that you have had some setbacks. I bet that you are both happy to be back at home an in recovery. They do believe the surgery was successful, but the complications have overshadowed the success. It was great to hear from you!
Please know that you are constantly on our minds and in our prayers. We hope the complications become less and less. Lots of love and hugs.
Thank you, Rich and Claudia! I hope to see you guys soon!
Alison, it’s so nice to hear from you, to hear that you’re on a slow and steady road to recovery.
Careful not to put an added stress on yourself by feeling you need to write your blog at the frequency you’ve been accustomed to.
Healing takes something you’re not known for…rest and relaxation..you’ve got many years ahead, so this is the time to prepare for it..
Thinking of you always…Shane.
Alison, it’s so nice to hear from you, to hear that you’re on a slow and steady road to recovery.
Careful not to put an added stress on yourself by feeling you need to write your blog at the frequency you’ve been accustomed to.
Healing takes something you’re not known for…rest and relaxation..you’ve got many years ahead, so this is the time to prepare for it..
Thinking of you always…Shane.
Thank you, Shane! It’s important for me to remember to slow down to heal and recover!
Bless ur heart prayers. You are a strong person thank God for you family
Thank you, Debbie!
Allison,
I am so happy to hear from you again, I was beginning to wonder about you. I so enjoy your blogs because you tell it like it is and I can fully relate. You have been through a miserable time of it, but yet you give of yourself to to take the time to update us while very likely still feeling like crap.
Having PD is no picnic in fact it is quite frankly a pain in the ass! Nothing is ever easy when it comes to Parkinson’s.
You are a dear friend to us all and it means a great deal
God bless you my dear friend it will get better for you because you are you.
Gary
Awwww, thank you, Gary! Your message touched my heart!
Oh my dear friend! Sending you lots of good vibes! I have missed you and hope to catch up soon! You are amazing!!
Thank you for those good vibes, Susan!
Hi Alison,
I was thrilled to see your blog today! I know you have been through hell and back but I hope you are through the worst of it now. You are the strongest woman I know! I know it’s not fun now but you will get through this! Hang in there. You have a lot of people praying for you! I’m always around if you need anything at all! Love you lots Girly! XO XO
Thank you, Susie! I am hanging in there!
It’s great to see a post from you–it sounds like quite a ride, but somehow you find the time and energy to be inspiring. Thank you! I had back surgery two years ago, and experienced first-hand how PD can change the game with major surgery. I wish you all the best with your recovery and next steps. Stay strong!
Mark, I had not anticipated for the challenge Parkinson’s becomes. Just taking it day by day!
Hey There!.
I am so glad to hear from you. With the long time delay, I was concerned that it could be the worst type of news. I am so relived that there is a new post from someone who I consider to be the true WONDER WOMAN.
BTW: I should know as I have really met Wonder Woman.
I wish that I had a magic wand and could make all of your cares and worries disappear.
I used to think that I was pugnacious, had tenacity and perseverence but that was until I met you. Now I know better.
I think of you often and am so glad that you are such a fighter. IF any one deserves a Championship Belt, it would be you.
Hi David, I will take that championship belt… I mean, I should get something out all this mess!
You have made a tremendous difference in this world, and all of it positive! Thank you for educating people on PD and DBS AND for showing that life goes on after multiple surgeries and any complications that might occur. An excerpt from your blog on ten strange things about Parkinson’s disease is cited in my next book, so watch for a bigger wolfpack, more awareness, and more prayers. No one listens if you don’t share, so keep on typing! It’d be a shame to experience all that pain and suffering and only one person (you) become wiser from it. Lots of love and prayers coming your way.
The power of sharing your story can be very powerful. Thank you for your encouragement, Dani!
You’ve been through so much Allison. Fare thee well my friend and mend.
Thank you, Michael!
Hi Allison….I was very excited to see your notification of a new post. It breaks my heart to read about all your struggles over the last couple months. I really hope you are on the mend and continue to recover. I wish I could come up with something more meaningful to say however I’m at a lose for words. Continue to get well.
Thank you, Gary… it has been a challenge!
Hi Allison. I am so sad and sorry that you went through all of the pain and surgery. I cannot imagine how much you have gone through and all of the pain. I am so happy to see you are blogging again. I will continue to pray for you to fully recover.
It’s so weird how much the DBS unit works in the background that sometimes we forget it is even there until the unit is turned off.
When I had my battery and control pack replaced this past February, I remember waking up in recovery with 5 orderlies and nurses at my bed. I asked my wife why so many people were there, and she told me that my tremors were so extreme because the DBS unit after it was programmed was turned off. I woke up with severe tremors in my whole body that they felt I needed to be restrained so I would not accidentally pull out my IV.
Once my DBS was turned back on my tremors stopped within 2 minutes
Chris, It’s such a shame that the medical field isn’t more educated on how to work with Parkies. Thank you for sharing!
Allison – man oh man. All of that is just big stuff to experience….definitely not like the movies. I hate that this has been your reality and while I can only imagine that your positive & perky outlook has been tested – your post shows that YOU are still winning. This.Is.Tough.Stuff. Sending you waves of healing, support, and all the virtual Froyo I’ve got! Stay strong lady!
Thank you, Stephanie! It has been a challenging time… but I will take you up on that virtual Froyo!
Perky, glad to get your post but sorry to learn about all the problems you’ve had recently. Please know that I have you in my thoughts and prayers. You have a community that cares deeply about you and is hoping that your strength will get you through this. Stay strong Perky. We need you!
Thank you, John! Your message keeps me strong and determined to get through this!
So happy to hear from you, Alison. Thank you for sharing so we can name our prayers.
Wishing you a speedy recovery.
Thank you, Lori!
I will keep you in my prayers. My name is Kim and I am a caretaker for my husband Fred who has PD. He has had DBS surgery. He has trouble swallowing and coughs a lot too as he tries to swallow. I have been told it is a side effect of the surgery. He controls his pain with marijuana. Sometimes in the candy form or smokes it. He was so against this as he never did anything like this before but found it to be the only thing that helped him. When he smokes it , it is the only time I can understand him . His speech is affected by his PD as a number of other things. Fred accepts his condition and tries to live his life to the fullest. He does not let his condition depress him. So, hang in there. Their are many people working on a cure. Keep the faith. Kim
Wow, Kim! Thank you for sharing your experience with Fred. I’m happy to hear that you two have found something that helps, even it’s just a smidge!
Glad to hear from you again. You are such an inspiration even though that’s the last thing you are thinking about. Prays for you, family, Drs, nurses, and you sweet doggy.
Thank you, Sheryl! I will accept all the prayers and positive thoughts I can get!
Oh Alison. I’m so very sorry to hear that you are going through such a terrible time. Keep kicking ass. If anyone can fight this…you can!! You are strong and determined.. You are in my daily thoughts and prayers.
Sending much love to you and your family! It’s got to be difficult for your parents to see you going through this. They’re pretty amazing people too!
Thank you for your kind words, Jodi! My family is a huge part of my support, they are pretty amazing!
Keep going you are a true Warrior. Sending you lots of positive vibes and hugs from the Channel Islands.
Linda, I can feel your positive vibes and hugs all the way from the Channel Islands! Thank you!
Wow Alison! I have not being following but just read this piece. I am praying for a speedy recovery and your well being.
Thank you, Gary!
Praying for you perk – hang in there you are way to special a person for God not to use this somehow. You are an inspiration to hundreds if not thousands and you have helped me a lot. You need anything call me.
Thank you, Daniel. Hope you doing well!
Hi Allison
you have always been there for me You are in my 
heart my friend
So life just keeps throwing you these curves
And challenges and you just keep swinging
Your bat Your on base now we need you at home plate I love you
You have taught me so much about keeping a
Strong attitude I’m here for you Love Chris
Hi Chris, I am rounding pack to home plate… just took a little detour. I think of you often. Hope you’re doing well!
Yesssssssssssssss. There’s a post from Parky. I didn’t know I could read English (not my first language) that fast. You’re having it tough, very tough. I can’ t really find the right words to express how i feel. Please hang in there. I am with you.
Shaky Johnny, ha! Loved your comment! Thank you!
Hang in there Red!! You got this!! You are one of the strongest ladies I know, dont ever forget that!!
Thank you, Julia!
My dear friend Alison. So sorry for this difficult journey you are on. You are in my prayers daily. You are the strongest person I know. Hugs love and healing prayers
Awwww, thank you, Carol! Hope you are well!
Dear Alison. You are brave , you are strong and hope each day gets better and better for you. I’m sad that you had to go through this nightmare.
~donna
Thank you, Donna! It’s been a long road.