IAmA 42 yr old with Parkinson's Disease who had a stroke while getting a DBS installed

What was your favorite Back to the Future movie?

The original.

What is going to happen after the next surgery? Will you still need some kind of medication? And do you need to have the batteries for the device replaced after a while? Wishing you all the best, good luck, bud.

After the next surgery, I heal for another couple of weeks and then I go to my Neurologist's office to have the system programmed/tuned my current situation. Once it's programmed, I should hopefully be able to reduce my medication (I won't know how much until they do the programming).

The battery is replaced as an outpatient procedure every 5 years or so. I also only had one side done (a precaution my neurosurgeon and neurologist like to take with younger patients for safety reasons), so I may need a second surgery in the future to install the electrodes on the right side of my brain for the left side of my body.

So it seems like you still have some things ahead of you. Was/is it difficult to maintain a job? If you have had one since your diagnosis, what field did you work in and how did your condition impair you in your daily professional life?

I am a software engineer. I stayed with the same company for 19 years and only recently switched jobs. However, both companies, luckily, have been supportive of me. I do very well when my medications are "on" so I can type with two hands and do my job. In fact, one of the reasons I am doing this is to practice typing with two hands before I go back to work Monday.

In my interview with my new company, I did inform them that I had Parkinson's which I was not obligated to do. However, my boss basically asked what that meant, and I told him I would basically type slower at certain times of the day and I would have to walk with a cane to maintain my balance at those same times. He said if it didn't affect my job or performance he didn't care.

What early signs did you have of Parkinson's that led you to look for a diagnosis? What caused the delay in diagnosis - did you take a while to seek help, or were there a lot of alternative diagnoses the doctors had to exclude first?

What medication had you tried before being offered deep brain stimulation?

How did the surgery feel? Were you awake and performing commands during it, or were you under general anaesthetic?

First sign of Parkinson's was a tremor in my right thumb. I currently take Azilect, Requip ER, and Sinemet each day. I actually take so much Requip and Sinemet that most Parkinson's patients are surprised I can stand up and function without a lot of side effects. I've also tried Mirapex and Stalevo in the past but both made me foggy/loopy and I quickly stopped taking both.

I was awake during most of the surgery. I even felt the drill going through my skull. When placing the electrodes, the neurologist during surgery basically shines a light in your eyes and moves your hands and legs to measure rigidity and response. Once they feel they've placed everything correctly. They energize each electrode to find the range of power that they have for each. Basically, they crank up the voltage until your face or arm or leg seizes as if you are getting a small shock.

Also, the delay was really me getting my act together and getting to a doctor, convincing my doctor I had to see a specialist, and then ruling everything else out (stroke, tumor, wilson's disease and a few other things). Luckily, I was sent directly to a Movement Disorders Specialist, a subspecialty of neurology, who could recognize Parkinson's pretty easily. Most doctors don't even consider Parkinson's in a 32-34 year old.

what were your very first symptoms? My grand mother had Parkinson's and it worries me because i occasionally have a strong tremor on my middle fingers. There's also periods of time where my hands will shake if I'm holding a pencil, or taking a picture with my phone. Do you think these are early symptoms?

Parkinson's is typically associated with a resting tremor. You seem to be talking about essential tremor which is different. You may want to ask for a referral to an Movement Disorder Specialist (sub-specialty of neurology). http://www.mayoclinic.com/health/essential-tremor/DS00367

Sorry, this question will be long: What is your day to day life like? Do you still get to take part in any hobbies or activities that you enjoyed before you were diagnosed or started experiencing symptoms?

Do you take any medication? And if so, what kind of effect does it have on you? About 8 years ago my Grandfather passed away from complications brought on by Parkinson's disease. I'm not too knowledgable on recent advances in care, so maybe it's better now, but I remember his meds used to make him really loopy and forgetful and he always really resented that. If you experience that, how do you feel about it emotionally?

Because of medications, my day-to-day life is pretty typical. I work full time and married with two kids. That keeps me busy. Before surgery I was swimming and running a few times a week as exercise is considered the best method to stop the symptoms from progressing. I was actually signed up to do a 1.2 mile open water swim at the end of September which my doctor has told me to stop. I am also interested in running a marathon, and have been talking with another Person with Parkinson's, John Ball, who leads Team-Parkinson in the LA Marathon and has run over 25 marathons and one ultra since he was diagnosed in the 1980s.

Did you have any major medical/health issues or complications or were you on any long term medications prior to the onset of Parkinson's?

What other medical issues have you had to deal with since, as you mentioned you had a stroke, and I know one disease is often not exclusive unfortunately?

No other medical issues. The stroke was a direct result of the DBS surgery and occurs in about 1-3% of those having the surgery. I was very lucky to have made such a quick recovery.

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With or without meds?

What other symptoms besides the thumb, and can you give a bit more detail about the thumb tremors?

The thumb tremor was a classic Parkinson's Tremor which they call pill-rolling.

a pill-rolling tremor - meaning the tremor consists of flexion and extension of the fingers in connection with adduction and abduction of the thumb. Imagine yourself rolling a pill, that is how the tremor looks like!!!

My tremor advanced to the rest of my hand eventually. The next issue was gait issues (walking), those began in July 2006 and which was when I first began taking medication. The first medication I took was Azilect as part of the original drug study.

Did you watch love and other drugs? And if so what did you think of it? Would it portray any part of your life accurately?

No, always meant to, but have not gotten around to watching that. Is it any good?

I don't want to be a Debbie downer... My grandma passed away from it. I've also taken care of someone in the late stages of it.

How does it feel that it's a long inevitable death? It sounds like a dick question but I've always wondered how people cope.

It's not a dick question, however, it's basically you take it as you get it. I got this disease very young so I knew I would have to live with it for a while. Because of this, I just deal with the issues and go about my day. Everything leads to a long inevitable death. I chose to be positive and keep positive people in my life. One of the first books I read about PD was by a guy named John Ball who has run in more than 25 marathons since his diagnosis in the 1980s. I met him last year, he's in his 70s now and is running the LA marathon again next March. That is the type of person I'm trying to emulate.

Do you still feel that the DBS implant was the right move to take - even after complications due to a stroke?

I'm looking at having to potentially end up with that as an implant in a few years or so due to progressive Essential Tremors.

Was stroke detailed to you as a possible danger of the surgery?

And when were you first diagnosed with Parkinson's?

Actually, I do. I believe the stroke is pretty much cleared up and the reduction in meds and my ability to just walk normally in the morning and evenings due to the DBS will more than make up for the week of issues.

Stroke was detailed as one of the dangers, although infection is usually the bigger risk factor. Stroke happens at 1-3%.

I was diagnosed with PD at 34, but have had symptoms since I was 32.

Do you ever wish you could be 25 again?

No. I started dating my wife at 27. Best years of my life have been ever since.

Have you considered CBD rich cannabis, or CBD extracts?

No. Are there any medical studies showing effects of cannabis on Parkinson's patients? I have not seen any.

Some strains can help prevent seizures & tremors. Only 6% of studies about cannabis are devoted to studying benefits, so fat chance finding much good information about it... I recommend 'Weed: Dr. Sanjay Gupta Reports', the recent CNN special.

Thanks!!

What do you forget the most after the stroke? What is the most worrying thing your forgot about? (and presumably was reminded about)

Nothing. I maintained all my cognition after the stroke. I actually was awake during the surgery and remember them drilling through my skull, which is pretty surreal.

Wow... that is indeed surreal. What about after the stroke? What did it effect?

The stroke pretty much affected only coordination on my right side. The stroke occurred where one of the electrodes was placed. They are placed at precise locations to help me with motor control, so it makes sense that the only part of me affected was motor control in my right side. By the end of the day of the surgery, I was not able to walk even a few steps with a walker or touch another person's finger with my own. I basically couldn't tell my right side where to go. Luckily, the stroke was small and I was able to get most function back within the week. I am slower and less coordinated than I was without meds but hope that when the DBS is turned on in September, that situation will be fixed.