Ah, yes… it’s springtime. When baby bunnies and little squirrels frolic in green meadows, while tiny birds are peeking out of their nests. It’s a time when 20-something spring breakers prepare to drink nauseating amounts of alcohol and make poor life choices. But for me, it’s time to do some spring-cleaning. There is something about cleaning out clutter and simplifying your life.
In the midst of dust rhinos and dog hair, I found my old laptop, which I last used in Graduate School… when I first started noticing symptoms of Parkinson’s disease. It was like finding Blackbeard’s treasure… but without all the lengthy nautical archaeology dives.
I was excited to see what treasures were stored in the chest… maybe a video of me doing something absurd (which usually ends up in bruises) that I can post online and become a viral sensation. I plugged that outdated technology brick into an outlet and pushed the power button while squeezing my eyes shut just in case it blew up in my face.
After a long period of grinding and whirling, the screen lights up. I felt like I had traveled back in time 8 years. I found pictures of past acquaintances, a ton of shots of my adorable dog Crash and photos of family and friends. Then I see this little blue folder that is titled “Health Videos.” Out of curiosity, I click on it and then unearthed a real treasure. In the spring of 2010, I had just been diagnosed with Parkinson’s disease and was on track to get Deep Brain Stimulation (DBS) surgery that following month.
I created a series of video diaries that detailed my experiences from placing of the lead to turning on the simulators, which have been lost until now. I thought that in honor of my 8th anniversary of being diagnosed with Parkinson’s on March 18th, I would like share these gems with you.
Just to clarify, my journey will be different from others. First, my Neurosurgeon does DBS in 3 surgeries with a week in between for healing. Not everyone follows this same path. Furthermore, how I felt or described my experience is exactly that… my experience. I am not stating that everyone will have the same emotions or descriptions. This was my raw unedited reality during that challenging time in my life. Enjoy!
P.S. Who’s going to bake me a cake for my 8th anniversary? I’m currently accepting applications.
2 Days before I start my DBS surgeries
Week 1: After my first surgery, placement of my right lead.
The morning of my second surgery
Week 2: After my second surgery, placement of my left lead.
Week 3: When my wires were connected to my DBS stimulators.
10 Days after all surgeries, about to get my stimulators turned on
After my programming
Hello Allison! I love your blog and you have inspired me to create my own blog, https://www.shakingitoff.blog
I have been living with Parkinson’s since 2005. I was diagnosed at age 36. I’ve actually done quite well despite the hideousness of this disease. My doctors have spoken with me numerous times about deep brain stimulation. I have just been so scared to go to that extreme. I am wondering how well it has worked for you?
Wendy, you have a great blog! And that you for listing me as a blog that you follow… I appreciate the shoutout. As for DBS, I would absolutely do it again… it has changed my life. I decided to do it at such a young age because it didn’t make sense to me to deteriorate as my PD progressed and then get DBS (when I was “bad enough”). Making a long road trying to get back what I had lost. You need to create a game plan to slow the progression of your PD. That was my path. A very personal choice, but it has made such a difference in my life.
Thank you for sharing your experience. Really inspired. Nowadays, Most of the people diagnosed with Parkinson’s disease and Deep Brain Stimulation is a whole new treatment option for Parkinson’s disease patients where therapy involves implanting an electrode device in precisely targeted areas of the brain to deliver carefully controlled pulses of electrical stimulation. Actually, I would like to share this post with my friend who is working with Novela Neurotechnologies I am really happy with this amazing medical technology.
I have Essential Tremor, and I am hoping to get DBS soon. Thank you for sharing your experiences, and for being vulnerable with your difficulties. This is such a great and informative blog! And I love your positive approach, despite the difficulties. You are inspiring!!
Kari, Thank you for your kind words. I Wish you the best with your DBS surgery. Keep us posted!
hi there its my second attempt to write this comment/reply Its late at night I cant sleep and its not because my partner is snoring or the little rescue cat has become aware that I am up and he thinks its playtime. Its because earlier in the evening I read about your DBS experience and it is playing over and over again i my mind. I want to thankyou for your honest warts and all post regarding your DBS….you are amazing I think if I had to have that 3 part operation I would not have returned for the second or third operation! Having said that I can see that the operation is a winner and all the pre operation nerves etc are almost part of the process. Anyway I am 10 years into the PD journey and I thought I would never let any medico play with my brain but famous last words I have found life impossible and I am coming to the conclusion that DBS is the way to go. In fact you make a heap of sense when you comment that there is no benefit in waiting until the PD is bad enough A million thankyous for your wonderful blog and its help in clearing the fog for me in making a decision! Look out DBS here I come. PS Husband still snoring and kitten having the time of his life thrashing the bedroom
Denise, thank you for your kind words. I’m happy to hear that my blog has made a positive impact in your life. Does your adorable kitty have a name?
hi there not about Mr Parkie tonight but a quick note on my furry friends who are a biggg part of my life : 2 old cats Merlow and Baise who love to be patted and find the most strange places to sleep if I want to find them I have to think like a cat; a beautiful mixed breed rescue dog called Pepper who knows when Mr Parkie is giving me a hard time and puts her head on my lap and gives that look of love that only dogs can give she also enjoys a small piece of my toast every morning. And there is more a pink and grey Galah named Harvey he lives just near the back door and greets me every morning with a” good morning where is my breakfast ” or ‘who is a pretty boy laughs out loud and also has the most disgusting smokers cough ( dont know how he learnt to cough ) and tells as all to have a great day! He was left to us on the passing of a great friend Galahs can live a long time. Next 3 cockatiels who also talk and sing We also have 7 old hens that are rejects from a battery hen house who lay 2 eggs a week between them. We are happy to have them running around the yard as living with us is like a hen retirement village.The newest addition is a wee rescue cat not named as yet but I have a feeling that Mog will become its name, There is nothing like youth to give the day a lift as this wee Moggie is a character Long and winded reply but my furry friends keep me going leaving Mr Parkie out in the cold
Well it sounds like you have a mini farm going on there! I think that animals are the best… they know just how to make your day a little bit better. Thank you for sharing.
JUst so that everyone know, each neurosurgeon does it differently. Ask questions at your first meeting. like how many DBS have you done? What % were problems? Do you use the most current techniques and updated DBS models? How long between surgeries? How much credence do the psych and cognitive test results weigh on the outcome? I could go on…but you know the drill…self advocacy…
Great points Annie! Thank you for your comment.
Hi Perky Parkie ( Allison),
I want to thank you for sharing these videos, although in the videos you seem quite at ease with the surgeries, I can only imagine what you must be feeling and thinking just moments before the procedures start.
i am inspired every day when I think back to your blogs of how positive and courageous your are in spite of your PD. You are a living testament for all of us to see our own potential while living daily with PD.
I look forward to more of your PD wisdom and strength that you share through this blog.
Take care and please do not ever change who you are.
CHEERS!!!!
Cory
Thank you for your kind words Cory!
Thanks for sharing this…I am 67 (was 64 when diagnosed)…I don’t have a tremor (sometimes I think I may have them around my lips. Strange I know). No doctor has ever mentioned DBS surgery to me…. I guess because I don’t have tremors,but I do have very painful Dystonia and. I fall a lot due to freezing up and horrible balance. Do you know if DBS helps with these two issues? Thanks again for sharing your blog .
I know that DBS can help with Dystonia, but I’m not sure about balance. But it doesn’t hurt to find out all the treatment options that are available or you!
PerkyParkie, thank you for sharing your experience. I am so sorry you got tagged so young in life. I love your attitude. I am a 66 year old great grandpa. I have thought about DBS many times but my Doc thinks I should wait. Trouble is, he is not living in my world. Again, thank you for sharing.
I’m not sure what your doctor is waiting for. Studies are showing better results if you get DBS done earlier into your diagnosis. Don’t forget to be your own advocate! Thank you for your comment.
Brave and perky, what a combo.
Thanks Pete!
fascinating it was done over 3 surgeries and staples. yuck
I had it all done at once and have very good passive effects on so far. Passive meaning that the mere presence of the wires gives me symptom relief. like no dystonia that I used to get at 7:30 every morning in my left foot.
They turn on the stim this coming Monday
Thanks Allison
so you have had it installed 8 years now. I was wondering what kind of durations to expect
Peter
Yes, 8 years and I have had one battery change. I’m happy to hear that you are having positive results so far. Wishing you a speedy recovery!
Oh man….thanks for showing your videos leading up to and after your DBS. I have been going once a year to Toronto Western Hospital, for the last 3 years as they monitor me for DBS. My last appointment 2 weeks ago and they have decided we can move to next step. I will have to go back for 2 days of testing (day 1 cognitive and psychologist. Maybe to see if I’m crazy for saying yes to this.lol. I can be funny also. Day 2 is levodopa test. No meds for at least 12 hours.) if all goes well then I give final go ahead and an appointment will be made. They told me we are still looking at 10 to 12 months before everything is done.
I’m so nervous and scared, however I’m at the point where I’m so sick and tired of tremors. Meds help with my slowness but not tremors. I am going to be 53 in next couple weeks and I don’t want to waste the next ten years getting worse. If I wait till I’m in my 60s to do this and it works I will feel like I wasted all that time. I know this is not a cure but have talked and know of a few people who said it was the best thing they did and have know regrets even though it took longer for some to get programming and meds just right.
Do you feel this was good decision for you looking back? I’m sorry I wrote such a long comment but this is incredible timing as I try to figure this out. Being Canadian we always have to say sorry🇨🇦😊..
Thanks for this post. I really appreciate it.
Gary, DBS is awesome for tremors. And yes, I do believe it was the best thing I could have done and I’m glad I did it earlier than later. It made no sense to deteriorate and wait until I was “bad enough” to get DBS and then try to regain what I had lost. Don’t be sorry my Canadian friend… Thank you for sharing your story.
Well I guess the first two surgeries were not that big of deal and the 3 third surgery did not seam like that big of deal ether. I was expecting a lot more bruising on the neck and chest area. In the video “Last week of surgery for DBS” What was that lump on the left side of your neck towards the back of your neck. It looks like it was on top of the wire but under the skin? The time stamp was at 1:40 of 2:13.
It was where my wire met the connector to my battery.
Hi Richard,
I would just like to say that if you think these surgeries are no big deal, why don’ t you man up and have the surgeries yourself
Then be completely vulnerable by opening yourself up and share your own videos on your own blog. It is easy to post negative comments about others, but even harder to read negatives comments about oneself.
I know that we all have the right of freedom of speech, but that does not mean you should use it in a negative fashion on a community blog that is trying to shed a positive light on what can be dark times for all those who are part of this community.
Since I have been part of this blog community, I only see you posting negative comments, while others are sharing their stories and posting positive comments.
I joined this blog community to be part of something where we can use Allison’s experience and passion for helping others to help me through my Parkinson’s. I did not join this blog community to interact with negative people like yourself.
Regards,
Cory
Definitely, a treasure found Allison. Thank you of sharing such a personal experience. I was surprised with the short window of time between diagnosis and DBS…was that as a result of your symptoms and the meds unable to control them?….and no choice but to act on it immediately ?
That would have been quite an emotional rollercoaster, I’d have to guess.
‘Meeting someone else with Parkinson’s’… sounds so different, when I think of how you’ve connected with so many, since then..
Pardon my queries, I’m just fascinated with this blog entry and still digesting the last 2 blogs, ‘Hallucinations’ and ’21 Days Left’…
Thank you, once again..
Shane, I got DBS surgery because my symptoms were getting difficult to control and being so young, it didn’t make sense to me to wait until I was bad enough to get DBS. Personal choice. Than you for being a loyal reader!
Barfing in my mouth all over again. Thank goodness you recovered famously. PD is not for weenies.
Thanks Dad!