I get asked quite frequently, “If you had to do it all over again, would you still elect to have Deep Brain Stimulation surgery (DBS) to help control your symptoms of Parkinson’s disease?” Why do I post this now? Well Monday, I will be going into the operating room and having my stimulators… AKA batteries replaced. Kind of like maintenance on your car. I need a tune-up. But seeing as DBS is an elective procedure in the first place, I have the choice if I even want to continue using the stimulators. This got me thinking about 6 years ago, when I was officially diagnosed till now. Do I wish that I had waited to do the surgery? Even more… Do I regret the deciding to do DBS in the first place?
Follow me back to March of 2010. I was taking Sinemet five to six times a day and barely controlling my symptoms. I could hardly keep up with my normal gym regimen. I had begun to assist my left arm and leg during my daily activities, which was alarming, because my body just did it without me thinking about it. I began to trip and drag my left leg but that was not the only thing I noticed; my left arm did not swing when I walked. If I consciously thought about swinging my arm, I could, but the moment I got distracted it would just hang there limp and dead. I had done much research on my own about Parkinson’s disease and felt that although it was unlikely, the symptoms described on the internet sounded just like my lame lefty.
I can remember the day that my fear became a reality. I sat in an uncomfortable flower-print chair in my neurologist’s office. The nurses in the front office were talking to each other about what type of sandwiches they would order for lunch. The background was filled with traces of annoying soft-rock music and an overpowering smell of stale coffee. It was apparent that someone put much effort into creating a calm and relaxing environment, but at the moment it felt as irritating as wearing an itchy sweater in the desert.
A nurse came into the waiting area and called my name. I followed the nurse as she guided me to the exam room. Hearing the diagnosis — “You have Parkinson’s disease. There is no cure, and you will struggle with this the rest of your life.” — was like being punched in the stomach. I felt cheated out of a life that held so much promise. I looked down at my rigid left arm, resting lifeless on my lap. It felt alien. This was not the same arm that helped me make the cheerleading squad. These were not the fingers that I used to play the flute in my high school band.
I was angry, sad, and scared. You can prepare for a new job, a baby, or a tropical vacation. But there’s nothing you can do to prepare to watch your body deteriorate at the age of 32. I was shocked by how fast my disease progressed. Looking into the mirror every morning became the biggest challenge of the day. The expressionless face that stared back at me seemed unfamiliar. I felt damaged. Walking was starting to become a struggle. The slowness of my movements and the rigidity started to wear on me. I feared that anyone who saw what I had become might pity me or look down on me.
That was when I decided to become my own advocate and started educating myself on treatment options. This is when I came across Deep Brain Stimulation. It was a personal decision to make. Did I want to deteriorate, lose muscle mass and mobility, just to wait until I was “bad enough” to get the surgery? Was I going to spend the most awesomest years in my 30’s struggling with PD? Well hell no! *Snapping my fingers in the air. I got DBS surgery done the following month. Yes, one month after my official diagnosis. It’s like I always say, go hard or go home.
Now I wanted to put my mind at ease knowing that I made the right choice. So what is a girl to do? How about turning off the very device in question? Yes folks, in an effort of guinea pigging myself out, I turned off my stimulators and then filmed myself. This would show what life would be like for me sans DBS. Now before I continue, my lawyers wanted me to put in a small disclaimer…
**Now readers, before we watch my video, I want to remind you that my blog is strictly for entertainment purposes and is not meant to diagnosis or treat any medical illness. The choice to turn off my DBS stimulators was my personal choice and I did hit the light switch off while in my Movement Disorder Specialist’s office. I am not a doctor, and although I am freakishly smart, you should probably follow-up with someone a little more serious than myself if choosing to become a guinea pig.
Now onto the show! Here is a video of my dog Crash and I dancing in the kitchen. This shows what I look like with my stimulators on and my meds are working:
And now, Ladies and Gentleman! Feast your eyes on the Perky Parkie as she bravely turns off her DBS system and hits the record button on her phone. Notice that my facial expressions don’t change. It’s like I have just learned that I won the lottery but then was told my dog died. I have a pretty exceptional poker face!
It is kind of scary seeing what my Parkison’s would be like without the help of Deep Brain Stimulation. Having a visual of how much those little battery packs do for me each day just reaffirms that I made the right decision to get it done early into my disease. And while I understand that DBS his not for everyone and that it is a very personal choice, I can go into surgery on Monday with the confidence that I am making the right decision of getting fresh new batteries for this energizer bunny!
Hey, my mum has just had her DBS fitted. Switch on day was two days ago, she’s come off some of her meds as instructed by the doctors. When switched on initially great but now she seems like she’s gone backwards..it’s only been a little while but when you first switched on was it instant ? Did it take time to get used to less meds ect ect ? Do you still have bad days? I think we all thought it would be a miracle cure but a few days in we are worried !
Jack, it is an unfortunate situation when you are misinformed about the end result of DBS. It will get better as the adjust the programming, so don’t give up yet. But you need to be realistic about what to expect. Hope it gets better!
It is my party trick.
I had dbs done a year ago and turn my stimulator off for a few minutes when around a group of people to show them what life would be like without dbs or medication. This is. A good education to people who are unaware of the extent of relief that can be achieved through dbs. People are fascinated. The more people that know about Parkinsons the greater the chance that funding will enable the ultimate cure of this disease. I have had Parkinson’s for 14 yeras
Hi. Thanks for the nice blog. I found your site when looking at turning off my DBS.. I have many of the same questions as you. Like should I get my battery replaced?
My DBS was installed for my generalized Dystonia rather than PD but I still wonder if I did the right thing… With my brain disease, DBS adjustments take about 1 month to show any difference with my movement.
I am doing better with the DBS. But I still use a motorized wheelchair and have difficulty talking clearly enough for people to understand me.
One thing I’m looking at is moving to the country. This means not being near a big city neurologist to make my DBS adjustments. I’m torn between turning it off, and thereby unhooking my leash, to regain Independence or to just continue with my health ruling my life.. still undecided.
Mark
It must be so challenging to not have the programming show results for a month. Hang in there, hopefully you can get some relief from your symptoms.
I am a professional vocalist diagnosed with Parkinson”s back in 2015 and just had DBS surgery September 14 2018.
I will begin getting programmed September 16 ( about 6 wks post-op ) and i’m looking forward with great anticipation and
optimism that having DBS surgery will give me.
JohnI will keep you posted
I am considering DBS. I am curious, someone mentioned above that only 10 % of candidates qualify for the procedure. What disqualifies the other 90%.?
Whilst I am writing, a quick plug for the benefits of cycling. I try and ride 50 + miles a week (with as much hill climbing as possible) and find that doing so greatly dimishes my PD symptoms. I realize this isn’t for everyone, that there may be balance issues (and you should definitely check with your doctor before trying it) but it’s the one thing I have found which makes me feel like I am successfuly figting back.
I have had PD since I was 58, i am going to be 66 soon. It must be hard to be young and have this happen. But unlike a fatal car accident wee have options. Single and alone I know that my future seems empty. I am so uncomfortable with others that I rarely go out . Then I cracked my front teeth out on the ice . So, my art is over, and often I feel beyond frustrated. Sinemet needs to be revamped, it is great when it is working, ( like me).Still, I know that life is what we make of it and even if I can never be comfy with others again, I have to be grateful for all that I do have in my life. The hardest thing for me is people asking me ‘ how can you deal with this or that?’ I can’t but I do. Even at my age, there are no answers, just smiles ( unless your teeth cracked off). I never had children, just dogs, and I will pray for each one of you to have a safe journey whatever path you take to relieve your pain. I watch King of Queens and laugh out loud because he laughs at himself, so can I.
I thought when I adopted my dog that I saved him, but really he saved me. Thank you for sharing your story. Sending you all my love! 💕💕
I know how you are with DBS as I have met you in person plus seen videos of you pre DBS. Glad you have the benefit of DBS and all the wonderful things that you do. But I was also glad in a previous blog entry, you talked about the progression of the disease even with the DBS. Some people think DBS is a cure. It is not a cure, but like medication, can be a helpful tool to deal with the symptoms. Best wishes for continued success, my friend.
So true. Glad that you’re commenting on that fact.
Good job Ali,you are braver than me.i had DBS surgery a year ago and I wouldn’t turn it off for fear it wouldn’t come back on. You were my inspiration for having the surgery .thank you
I had DBS in 2013 and it gave me back my life!
Perky, I opted to have DBS 3 months ago due to the dyskinesia caused by levodopa. I had the procedure done at NIH and have been pleased with the results. I am taking a lot less medication than and I was which means I don’t have as much of a problem with dyskinesia. I opted for DBS 5 1/2 years after diagnosis. I feel fortunate that I qualified for the surgery as I’ve heard only 10% do. NIH is conducting clinical trials for those considering DBS and I would strongly encourage anyone interested in the procedure to contact NIH.
That is great! Dyskinesia is one of the not so pretty side effects of the medications that we have to deal with. So happy to hear your are having positive results!
Wow !!
While I’m not scheduled to be in the queue at this time, for DBS, I’m always curious about the real life results of treatments currently in use.
Thank you Allison and fellow subscribers for sharing your experiences.
Wishing all of you the best with your upcoming DBS tune ups and implementations.
Thanks Shane!
I am going in again for a new DBS myself on Monday but unlike you this will be my sixth attempt for my surgeon to get it right. In I the last two & half years l’ve had three stimulars fitted and two revisions of the cables. 6weeks ago l got told that the battery on my DBS had all but gone after only 10 days, and that the DBS wiring or electricos were probably faulty from the word go.
I cannot faulty the surgeon or his team for their care but l seriously hope this time is the last.
So am sending you my best wishes for you operation and recovery on Monday.
Oh my gosh! I’m so sorry to hear you’ve had so many problems. You will be in my thoughts.
Your blog is always such a good read! I am being eval’d for DBS next month. I’m still vain, tho, do they cut all of your hair off?
Depends on your surgeon. I didn’t have to lose my hair, but some do. Good luck!
Very interesting and disturbing video. I’m looking forward to World Parkinson Congress in the Fall to see and hear about treatment breakthroughs. Good job.
I was diagnosed in May, 2011, and had DBS 4 months ago. I was just reminded of the difference because I had a small surgical procedure done last week. The system was off during the procedure, and when in recovery I began tremors of both arms. I turned the DBS back on, and all was calm again. It is a big surgery but has huge benefits in battling the PD symptoms. Thank you for your blog!
Wow! It just shows how lucky we are to be diagnosed today when we have many options to help our disease instead on decades ago when they only had Sinemet?
You’re my hero. I was diagnosed with young onset and I am going to have the surgery this year. I love your blog. I understand everything you’re going through.
Good Luck !!
Thanks for reminding me that I cannot be perfect and then it was worse before the surgery you kind of expect everything to go just fine and when it doesn’t Somethings not working but thanks again for reminding me Bob
Sometimes it sucks to have those a-ha moments, eh? Best of luck to you.
I think the day after you have the tune up, Hillary should declare you as her running mate.
I accept your challenge.
I am probably going to have DBS this summer since my daughter is a teacher and can help me out for the first couple of months. I was hoping I wouldn’t have to take as much meds then since Sinemet destroys my ability to sleep. I’m like you in that before Sinemet, (I was diagnosed in May, 2015) my left arm was useless and I staqgered and even had to crawl up stairs. Still have trouble with my left arm and hand. Can’t play my clarinet or the piano, don’t like to sing in choir with my arm flapping all around, have to be very careful with the mouse–my fingers will decide to tap it at most inopportune times. DBS will control that, I understand, but I’ll still have Parkinson’s and it’s progressive. Well, I’ll just have to cope as best I can but losing the tremors would be great. THANK YOU SO MUCH!
Thanks so much for this. I am currently wrestling with making this decision. it is so encouraging to see how much it has helped you.
Many thanks
Ryno
Allison, I agree with you, DBS has been worth the price we pay. It controls a terrible right leg tremor and left foot and neck dystonia, all uncontrollable with medications alone. Every once in a while I turn my ‘equipment’ off and am reminded ‘toute suite’ what those transmitters are saving me from.
I take just as much or more medication, and I am slow losing the ability to communicate vocally. I slur so bad. I refer to it as my second language, slurganese.
Say hi to your dog SMASH.
It’s crazy, I also had DBS, when I am on I can do anything!
When the meds are off, see self doubt,,fear and rigidity comes into the room.
I love your attitude! This may be our year for a breakthrough!
Keep on rockin!
I love your blog. Thank you so much for sharing!
Thank you for reading! 😊