IAmA 39yr old with Parkinson's Disease diagnosed for less than 4 years and I've had the first stage of Deep Brain Stimulation surgery, AMA.

Parkinson's researcher here. Have you been genotyped to determine if you have any gene mutations that are known to increase risk for PD? Have you considered enrolling in gene therapy trials? I know in the UK this is advancing but I haven't looked at NZ.

Since you're a researcher...

My great grandfather on my mother's side had Parkinson's and died of it, and my great grandmother (same side) died with a bad heart and terrible Alzeimer's. My uncle (mother's side) has Crones disease. On my father's side of the family is mostly just back issues and cancer and heart problems.

So how at risk am I in this situation?

...am I going to die a horrible horrible death at age 25 or something? I already had a tumor that grew out from under my toenail from my bone and they had to open my toenail like a flap door and drill a hole straight down into it to remove it. Needless to say my nail bed is fucked up now and toenail will never be the same. I had to have some additional reconstructive surgery done on it recently in fact. Just been trying to man-up through it.

Environment still plays a significant role. Lead a healthy lifestyle, and you will reduce your chances of many of these diseases. All the problems you have mentioned are linked to environmental factors, like diet, exercise, and stress. Genetics plays a role. But it's sort of like a tall person being at higher risk of bumping their head; if they take more care they might actually bump their head less than a small person.

Don't smoke, drink heavily, eat a diet mainly consisting of vegetables, and most importantly, don't worry.

Actually, interestingly enough, smokers obviously have an increased risk in acquiring numerous cancers, such as lung, throat, etc, but actually have a decreased risk in acquiring PD. Makes for a very confusing set of circumstances.

That's true. Although, you have a higher chance of dying young, and avoiding those diseases. Maybe those with the genes which predispose them to those diseases also predispose them to smoking related diseases, and die before they present with Alzeihmers or Parkinsons. We don't really know whether it is just a correlation or causation, yet.

I smoked and drank coffee like water. Didn't do me any fucking good!

I did but my cynical lawyer side took over and said no. Rationale, until treatment is available there's little point in knowing. And my main reason is anti-selection. Not so much me but my kids. Insurers try anything to weasel out of contracts, and if there is a test floating around saying I'm x and y kids are x and they answered y on an insurance application...well they are toast. Believe me, as an insurance law specialist this is a possibility and therefore not a risk I'm prepared to take on behalf of my kids and their kids.

My dad has Parkinson. He used to shake very much, making him drop weight and making his day-to-day life really difficult. Understandably he was in quite a sulle mood all the time. He tried out a lot of the regular medicine but none of them really worked out.

Then, he had the DBS-surgery done. I visited him in the hospital the day after expecting him to be really worn out. Turns out, the DBS worked wonders. He was already up and about, telling stories and laughing. He was his old self again!

He still shakes a little bit, but the change is remarkable! I hope everything works out as good for you too OP!

Cheers, appreciated.

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My dad had this surgery back in 2009, and he said that most things remain a blur.

He said the weirdest feeling was having them work on his brain while he was still awake. My dads surgery lasted for 13 hours, and they had to repeatedly move electrodes around his brain. They almost had to make it a 2 day surgery since he was topped out for the medicine that they gave him.

The doctors had to keep having him lift his legs, or his arm, or wiggle his toes or his feet so that they could judge how the electrodes were working in his brain.

I was awake, high, and they couldn't give me to much memory blocker as it stuffs up the electrical signals they need to record.

sorry to be lazy but here's the copy of my blog post at www.youngandshaky.com

"Halfway there….

Posted by AJ on Monday, January 7, 2013 · Leave a Comment

2012-11-18 18.06.37I wasn’t going to post an update until everything had been completed but it seems people want to know how it all went judging by the messages I have received. I am pleased to say it went well, and for 5-6weeks post surgery I had really remarkable results. I am chomping at the bit to get powered up now and get back to that first post op high.

Stage One DBS Surgery has been successfully completed and I eagerly await part 2 due to be scheduled as I write (hopefully soon). The rationale for the NZ method behind splitting the op’s -first the implant of probes in brain) and second the connection of wires to pacemaker device and implant into chest – is because patients can experience positive effects from the first surgery alone and it can be difficult to separate out those from what the actual device is doing. Thus tweaking the settings on the device post surgery is more prone to error and subsequent readjustment, something which I imagine is a hassle for patients and medical teams, although I am yet to experience this first hand.

I suppose the best I can do is describe what it was like, based on my mostly intact recollections.

Tuesday 13 November (a lifetime ago it seems). I arrive at hospital about 1pm and get shown around the ward, including HDU (High Dependency Unit) in NZ medical jargon, a step below ICU, where I will spend the following night. After a round of blood tests, and general poking and prodding by the nurses, I am kind of left to chill as best I can. My wife and I are getting pretty nervous by now but trying not to let each other know too much in case we stress each other out. A good friend who is an anesthetist at Auckland Hospital comes by and reassures us that we are in the best of hands and wishes us luck. Later, the neurosurgeon’s junior comes by and has a chat to see how things are. We have the “talk” – while the risks of serious complications are small, they are there and he needs to be sure I know and I am still willing to go ahead. Death, a stroke…but I never once query whether this is the right course of action; I and my family, deserve this chance. Fair to say sleep was not easy to come by that night but I managed to drift off for a few hours.

Wednesday 14 November: Un-medicated to start the day, and I feel like I have offended an Italian mob boss and earned a concrete body cast. Not fun, but short term pain right….Somehow I shower and wash my soon to be shaved hair. They come for me soon after 7am…First to pre-op where my very nervous wife and my mum are waiting. Lynn reminds me that I’m nowhere near as funny as I think I am so don’t make too much of a dick of myself. We say our “see you soons” and its down to theatre where the party is just getting started. A nurse, Kate, shaves my head. Reuben, another nurse takes a photo on his iphone so I can see what I look like bald. I comment that Kate could have a second career as a hairdresser, to which Reuben responds or a first career! A few laughs break any tension and I relax as the dope from the anesthetist starts to work its magic.

They have to fit my head to a frame, the top of which is also the map – the fused MRI and CT images, which the surgeon will use to implant the electrodes in the correct spot, and which is then bolted to the bed so I don’t move- I have been warned that this is the worst bit of the whole surgery. It lived up to expectations. Luckily the anesthetist isn’t stingy with the good stuff, as they try to screw it into my skull. Clearly something is amiss as I can hear the surgeon say that it wasn’t fitting properly and to get another. I am quite uncomfortable and let them know…more needles to the scalp ensure I can feel what is going on just no pain. Which I imagine is excruciating as I feel the screws turning in my skull. Chalk it up to life experience huh.

Soon they get a better frame for my fat head and it screws on easily. All residual discomfort is gone and the team are satisfied. Then its off to get a CT scan. Pretty doped up by now I enjoy the pretty lights as I go zooming by in my comfy bed. Coool……Soon its back to theater and then I hear the drill come out. A bit of pressure on the skull then they tell me they are starting. We had been told that each center in your brain has a unique electrical signal and the sub-thalamic nucleus makes a “chk chk chk” sound when activity is registered. As the probe goes in I hear the sound get louder and louder. Pretty trippy. The team are pleased with the placement of the first probe and switch to the next one. This cannot be easy – the little pink olive shaped structure in this picture marked STN is what they are aiming for. Not exactly the easiest thing to do, but it is brain surgery after all and I am in safe hands with Dr Bock. Wide awake and high as a kite I just relax and let the team do their jobs.

The placement of the second probe goes well and soon they have me rigged up to the power. This is where the fun (for me) really began. Lorraine MacDonald, our amazing Movement Disorders Nurse Specialist, is with me and has me complete particular tests they benchmark Parkinson’s against, as Dr McAuley fires up the power. He asks how it feels and I say AWESOME. Chuckling he says no really and I say REALLY AWESOME. Apparently that is not the usual response, not to mention clinically unhelpful! After a few adjustments the team soon find the outer parameters of the power which my brain responds to, when I feel the left side of my face scrunch up and I go blind. Sticking his head around the frame and into my field of view, Dr McAuley agrees- too much power!! All settles back to normal as the power is dropped back a notch.

I guess the best way to describe it was I felt more alive than I have in years. As the power shot through my brain, I felt like I was in a performance car or speedboat as the driver drops the pedal and the engine revs up. It was an amazing sensation.

Soon, around 1.30pm I was wheeled back to recovery, after some ill advised singing and poor taste jokes (well I haven’t changed THAT much since I got PD). Give that anesthetist a gold star, his work was in top form that day.

One night in HDU then one night on the ward. Less than 48hours after major brain surgery I walked out of Auckland Hospital much much better than going in (sans walking stick). I cannot really explain how good that felt. But trust me, it was a great feeling indeed. A few tears of relief, gratitude and joy were shed. Mostly by me.

The positive effects of the surgery gave me 6 really good weeks before Xmas but sadly I am back to pre-op condition now. But I have only got the probes inserted, not the pulse generator which will provide the power. So it was a huge success, 10/10 according to the surgeon and now that the swelling in my brain has gone down (hence return to stiff and shaky), they will have I hope less trouble getting me at a workable level quickly once I have surgery part deux and then I’ll be LMFAO as the kids say.

Thanks for all the messages of support, it was humbling. I’ll post more soon and more frequently now that I kind of have movement in my fingers (some of the time at least)…In the meantime Happy 2013 and I hope that you and your loved ones have had a safe, happy healthy Xmas and New Year break. Ciao for now…AJ"

How does this affect your day to day life.

considerably. I can't walk without a stick, can't dress myself let alone my 3yr old daughter, can't work. Really hoping that when the power is on I will get some control back.

My father was the same way, he got it done years ago, his life got much better and he married the love of his life. But his voice has all but slipped away. They don't really know why but he talks softer and softer every year.

Also did you ever work around pesticides or on a farm when you where young. He always asks this to other people with the disease.

Speech and language pathologist here. Actually, people getting quieter with Parkinson's is very common! It's one of the main features of the disease for us. Look into finding a speech pathologist who is certified in LSVT here.

A speech therapist from down under hmm?

I've done LSVT. Very worthwhile. Wife stopped asking me to speak up everytime I said anything. Given communication is key to all relationships, it improved mine markedly. Good call promoting it.

Glad to hear LSVT was helpful for you. Wishing you all the best with your treatments and hope to be updated on your results and progress!

many thanks

my mom had this same procedure done about 4 years ago. it did help at the time, actually quite a lot. even just having the probes inserted showed some improvement before having the wires connected to the generator thingy. unfortunately it only seemed to slow it down for a few years. she's also in her late 70s so I'm sure that plays a part. I wish you the best of luck.

hey thanks, I really appreciate your thoughts. I hope to get a few years out of it and my surgeon was confident that the positive after effects of the initial probe placement bodes well for the future. So quietly confident that I'll be a new man in a few months...

Do you still take medication after the surgery?

at the moment yes, 9 different drugs 5 times a day (5 for motor symptoms, others for depression/cognition etc). And an apomorphine (no not the good painkiller but an anti parkinsons med via constant infusion thru a pump (much like a diabetic). Pretty sure you can get Apo in the USA but only as a one off injection, not the infusion pump. My gut looks like a smack user on roids as a result of injecting myself every day for 20 months.

positive after effects of the initial probe placement bodes well for the future

Ooh, are you getting positive after effects already, before the second surgery?

yup I had 6 glorious pain free weeks....then it was back to pre-surgery pain, jitters, tremours, dystonia and dyskenesia. Shithouse in other words.

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I went to the GP (family doc in NZ) with a numb right arm, a feeling of disconnect between my hand and my brain (ie I couldn't keep up in meetings taking notes and as a lawyer you can imagine how well that worked) and numb slightly twitchy fingers. Thought I had a pinched nerve. 6 months later neurologist says, nope its Parkinson's.

Was there any cause to this? Not trying to be rude, but is there anything the rest of us should do? Or do differently?

No one has yet discovered the cause of the disease for most people. I think the latest research talks about cell degeneration at a molecular level as a result of certain proteins misfiring as the cell divides but 95% of people have idiopathic Parkinson's i.e. no known cause. Sometimes genetic (particular DNA) or environmental factors play a role. In most cases though it just come on, and by the time you show symptoms you've already lost 80% of the brains ability to produce dopamine (one of the key neuro transmitters). I had no family history and didn't grow up in an orchard using pesticides (as has been the cause of Parkinson's in some). So the answer is no, there's not a shitload anyone can do to prevent it.

One thing to point out is that, just because you've never knowingly been exposed to some toxic chemical doesn't mean you haven't been exposed. People use illegal shit all the time, many chemicals persist in the environment, etc. Most Americans have detectable levels of pesticides that were banned 30 years ago. Two towns over from me there was a scandal when they found some farmer was using illegal pesticides, and levels at 300 times the legal limit were found near a playground.

But you're right that there's not much one can do about these things.

probably. my grandparents had a farm, as did two sets of uncles/aunts. But who the hell knows.

There is no known cause of Parkinson's. I believe there are some genetic mutations for some people - particularly Askenazi Jews, if I recall correctly? Also there is some cause to believe that if you were exposed to Agent Orange that this may play a part in developing PD. But there is no convincing evidence (at this time) that PD is hereditary or can be caused by the environment - though there are obviously a multitude of studies investigating those topics. Basically, there's nothing you can do to prevent it.

right on

My mother (65 y.o.) is going in to have this done on February 8th. Any advice you could give to the both of us? What was the recovery time like for you? She's somewhat nervous about the fact that she has to be off her meds and awake for the surgery. Was it as nerve-wracking as she thinks it's going to be?

Basically go in with a positive attitude and trust your docs. I was so fraking high I didn't notice being off my meds and I was fine (age maybe helped though). But I went in on Tuesday avo, surgery started 7.30am Wednesday and I walked out of the hospital on the Friday morning just before noon. If they are doing it all in one (ie power pack implant in same surgery) it maybe longer. I expect I'll be in longer this time to get over the general anesthetic and pain of having a tunnel made from my skull to chest.

Probably the worst nerve wracking part would be having family lurk over them like a pack of vultures. ;)

Worst horror story I heard was from my mother who had a minor stroke while getting a thalotomy. The hospital fudged the paperwork to cover it up, and cover someone ass. Way to go Uni of Wash. ;)

She's doing well these days though, the stroke was only a minor setback.

one of the first people I ever met at my first parkinson's support group had had a stroke when going thru dbs and was a vegetable being fed by spoon by a carer. Gave me the shits for months...not a good start to going public...I was reliably informed she was the exception by far not the rule!

My dad was diagnosed with young onset PD at 40 (ca. 1995) he didn't have DBS until 2011. PD is an extremely difficult disease and there are many aspects that I find people do not talk about or are not aware of. It's not just about motor symptoms. As the disease progresses, there are more cognitive defects that become apparent. Basically, my dad doesn't have a sense of right or wrong, doesn't comprehend logic/reason, gets very emotional very easily, and he has paranoid delusions. His personality completely changed. This is all in addition to motor and speech deficits. It is extremely important to find good doctors, to trust them and follow the treatment plan.

I hear you. one lot of pills turned me into a porn addict which disappeared once I stopped taking them. Pretty hard saying to your docs ah think this is causing that...now its a a well known phenomena...

Don't give up man. Just keep at it with your medicine. My father was diagnosed with Parkinson's in '06 when he was only 42. His symptoms were terrible (only in his right hand) but since he's been eating healthier and exercising it hasn't gotten worse!

I hope you're dealing with it well!

well you can sit in a corner and feel sorry for yourself or you can get over it and get on with living as best you can. no point crying over something you can't change, and I have young kids to raise as best I can. Sure I have my pity parties but you just have to get up every day and somehow face the trials ahead. Not easy but the alternative is pretty shitty right?

[deleted]

It was great, wears off after initial probe placement and then once battery pack implant goes in hoping for a great deal more function

[deleted]

cheers, my daily duties as house bitch and dad to a 3 and 5 yr old keep me on my toes

Have you tried anything prior to surgery?

9 different drugs at the moment plus an apomorphine constant infusion pump. DBS surgery only actually works as a treatment option for some patients and some symptoms. Its not a cure, it doesn't slow the progression of the disease, it just replaces the drugs (hopefully all) and subsequent side effects. I was lucky enough to be selected as a suitable candidate given my particular grab bag of symptoms.

Would you perhaps do another AMA after February 11th? My grandfather has Parkinson's and is considering DBS. I wish you the best of luck.

glad to

I used to work for the company that makes your brain implant. I should get back to work.

please!!

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Thanks, we need people like your SO to find a cure from this cruel illness. So best of luck to him and his studies.

I had the same surgery done two years ago as part of a clinical trial for depression. I had the complete surgery done all at once. I also was awake for part of the surgery, which was really kind of scary. Good luck to you.

cheers

I've read that DBS for severe depression is promising. Can you report how it has worked for you? Thanks.

It has completely changed me. I have finally gotten out of 25+ years of depression.

I have been on 17 different medications, seen several different therapists and psychiatrists, and had about 20 ECT treatments. The ECT did give me about two weeks of relief, but because of strange complications (my first psychiatrist moved, my next psychiatrist was diagnosed with leukemia, couldn't find a new doc, and my doc didn't know that much about ECT) I quickly fell into depression again.

During my chaos trying to find a doctor, I had searched online for clinical trials. I was desperate. I was willing to try anything. I received a phone call from a university trial coordinator at some point. I had forgotten that I had submitted an email because of the ECT.

It turned out I qualified for the trial. I had scored 39 on the depression rating scale they used. At 20 a person is considered depressed.

The surgery is a lot simpler than you would think, considering it is brain surgery. It took most of a day, and for part of it I needed to be awake for testing. My surgeon is considered an expert on this surgery, having performed it over 700 times.

After a couple months of recovery, I started the trial. It was great. I didn't go from depressed to happy in a day or anything, but the difference was obvious to me. I finally didn't go to bed every evening wishing I would die. I stopped thinking about how I was feeling, because I wasn't so unhappy. I just lived each day as a "normal" person, and I am so glad to say that I still am. I have now stopped worrying that I will fall back into depression.

I still see a doctor every couple of months and take the depression rating test ( which I now usually get a 2 or 3 on, compared to 39 before!) and have the devices checked to make sure the batteries are okay and they are working properly. I will soon be having surgery to have my devices replaced with ones that have rechargeable batteries.

Everything has gone so well, and I can't believe how lucky I am to have been included in the trial. There are some complications with the device manufacturer not wanting to continue the trial, but the university has agreed to continue to provide me and the few others in the trial with care as long as we still have our devices in. I would guess that I have received at least $500,000 in medical care so far.

My husband and son really noticed the difference in me. My son found it hard to get used to a mom that isn't grumpy and moody all the time. My husband one day said to me "do you realize that you are completely better now?". Of course I do!

I try not to dwell on all the years of misery I had. It's really hard to realize that I don't have any happy memories from before. Luckily, I had a great therapist to help me to see things differently.

If you have any questions I would be happy to answer them for you. There are a ton of things I left out, but don't want to bore you. It's amazing to me how everyone who has had/has depression has such a story to tell. I guess everyone does.

I have suffered with depression and anxiety for a long time as a result of the Parkinson's - they tend to go hand in hand. Thanks for sharing your story.

My grandma had this surgery roughly a year ago. She is doing alot better, i hope you have a good recovery.

awesome news, thanks for your support.

how does it fell if you dont take your medication and freeze up. [ question about parkinsons disease not the operation]

like i am wearing a concrete suit

Wow, thank you.

yeah it isn't pretty. some days my wife has top dress me because I can't lift my leg to put it into underwear/trousers.

Wow, I couldn't imagine not being able to do just an average everyday task like that ( sorry for rubbing it in that was unintentional ) thankyou for answering my questions and giving me an insight into what its like for you, you are now my second favourite person with Parkinson's just behind Michael j. Fox, ( he set up a foundation to find a cure for the disease and he auctioned off the shoes he wore in Back to The Future and donated all the money to his foundation . ) I don't know what else to say other than it has been interesting talking to you.

cheers. The more awareness of what this disease can do to you the better IMO. As I have been known to say "it's not just about the shakes and it affects more than just older people".

Pleasure taking to you too

Glad to see that more people are becoming more aware of this disease!

Anyways, my dad has Parkinson's and has had it since 2001. He had his DBS surgery in 2009, and it's done wonders for him. Had he not had it, he would be wheelchair bound with the need of assistance for just about everything. 3.5 years later, and he's still walking around, although not as well as he could be, but better than he would be without it.

1. How long did your surgery take?

2. Are there any other steps you plan to take as a preventative measure?

3. What do you think of Stem Cell research and how it could help Parkinson's?

4. What kind of support system do you have back at home?

Thanks for doing this AMA and making people more aware of this disease!

6 1/2 hours or so.

Exercise. Exercise. Exercise

If it can help then full speed ahead.

I am lucky to have a wonderful wife and great mates, plus a generally helpful wider family

I had the opportunity to speak to a PD patient once who also underwent DBS awake. They had an anesthesiologist induce a trance-like state by talking to him. Did they do something similar when you had surgery to distract you from the noises and the headcage?

nah they gave me something my anesthetist said was like date rape drug. I have very clear memories but the whole 6 hour procedure felt like maybe 1-2 tops

My dad actually had it for 1 1/2 years. How bad is it for you? Does your whole body shake or just like a hand? (my dad is only 1 hand that shakes) How has it impacted your daily life? Has it prevented you to do something you would have done without parkinson? Did you have a hard time dealing with it?

yeah it affects me a great deal www.vimeo.com/49073748

check out my blog at www.youngandshaky.com

Would you like to meet Larry David? Do you think he would accept a soda from you?

at my worst, he would never take a soda from me :-)

I'm hoping you watch curb your enthusiasm and that you watched the episode with Michael J Fox.

I saw that. LMFAO. Larry David and MJF comic timing was awesome

its interesting how to do a brain surgery you do not need anesthetists because you cant fell pain in your brain

correct, no pain receptors in the brain per se, just for getting thru the skull!

I am an aspiring app developer and I was recently approached by someone who has a brother with Parkinson's Disease. He said that they had wrote a little web interface for his brother to keep track of his symptoms. He asked me if I would consider developing an app to handle such a thing on a mobile device. I am not familiar with the disease at all and am wondering about a couple things:

• How important is it to keep a record of symptoms? Is this something that is needed?

• User Interface design would obviously be a challenge. How difficult is it for you to use a touch screen device?

I do not have PD, but from what I understand it's important to keep track of symptoms and when medications are taken so that they can figure out when meds wear off, how long it takes for them to take effect, etc.

Someone please correct me if I'm wrong!

very important. I'm on a strict time frame for meds, doses have to be on time or the wheels fall off pretty quickly

better than a laptop (i use a tablet alot)

How did it feel getting the DBS while awake? Hope it all goes well in Feb!

pretty cool actually. see post reply above (which I re-posted from my blog). lazy yes, but sore hands and limited typing movement means best I can do tonight sorry

What is your long term prognosis? Are you able to continue working as a lawyer for now?

No I "retired" 18 months ago. Not so much because of physical side of it but the lesser (publically) known non movement symptoms - cognitive dysfunction/fatigue etc

My grandfather has had Parkinson's for quite some time, I believe he was diagnosed perhaps 12-15 or more years ago, and he is still operating a Texas cattle farm. (albeit from his motorozed wheelchair now) He certainly has to have some help, but I just wanted to let you know, don't give up what you love, keep pushing, it'll keep you going. I wish you the best of luck, and I hope that the surgery helps you out. :)

thanks, my 96 year old great aunt reminded me to never give anything before I absolutely had to so I try and live by that

My uncle is 51 and had the same surgery performed about 2 years ago. He has had Parkinson's since about 15 years ago. I can tell you it DRAMATICALLY improved his condition. Before he couldn't walk, could hardly talk, and had difficulty breathing. Now he does all of that on his own just fine. Best of luck!

fantastic, that's great encouragement!

What age did you start noticing symptoms/what were they? Did you have a family history?

about 35. numb fingers and hand, feeling of disconnect between brain and fingers, some tremor. No family history. Knowing what I know now I started showing symptoms about 5 years prior to then, but they were not known by me to be PD symptoms i.e treatment resistant depression, no sense of smell, fatigue, shoulder and neck pain.

Wishing you success in your surgery and recovery!!

thanks so much

My grandfather had Parkinsons; I've seen the damage it can do. Just writing to wish you a swift and complete recovery. All the best!

cheers thanks

My grandfather had Parkinsons..thankfully for him, it only really began affecting his life around age 62. Have you met others with the disease, and has it helped you cope with what will happen to you in the future?

many many people. Yeah I actually have spoken to a few conferences about my attitude to life and the future. You just gotta keep smiling and take what the universe deals out as your hand of cards. But just because you can't change those cards doesn't mean you can't change the way you feel about them.

I used to work at a non-profit for Parkinson's Disease and my grandfather was diagnosed with PD very late in his life. You're so young and you haven't had the disease long...what made you want to undergo such a serious procedure so early?

Best of luck to you, I hope they find a cure (or at least a cause) soon.

because I have PD on roids. Its supposed to be slow and progressive, but I got the super fast version. Diagnosis to DBS in less than 4 years. Essentially meds have stopped working and I'm crippled. Video here FYI:

http://vimeo.com/49073748

How fast did symptoms progress, and when did you first start noticing problems?

edit: I ask this because I am 35 and just started seeing doctor for Parkinson like symptoms

see my replies above :-)

Congrats on the successful surgery and I hope your next one goes just as well! It might be too personal but I was wondering if you could tell me how having PD has been for you and how your family has been dealing with it.

I only ask because my boyfriend's father passed away from PD and my boyfriend never really got too specific about it and I'd like to be able to talk to him more about it in the future.

its really hard on my wife and kids, I wrote this recently to explain it:

http://youngandshaky.com/?p=291

We have Parkinson’s

Posted by AJ on Wednesday, September 12, 2012 · 3 Comments

I’m writing this post in the coffee shop in Auckland Hospital while waiting to see my neuropsychiatrist as part of my assessment for DBS and as you do before these appointments I have been reflecting on how I am feeling and what’s been going on in my head. To be honest the bad days out number the good at the moment. I suppose that is to be expected – after all my doctors are hardly likely to be considering invasive brain surgery if I was doing ok, but that doesn’t make it any easier.

Someone recently asked me what was the worst thing about having Parkinson’s at 39 years old. Is it the dystonia, which curls my feet and twists my arms and neck, contorting my body like a performer from some grotesque parody of Cirque du Soleil? Or is it the pain which feels like hot pokers rammed into my hands and feet, burning so intensely that one of the only ways to gain any relief is to use ice packs to numb the senses. Could it be the unpredictable wearing off of my meds, leaving me rigid and stuck and yet perversely shaking as my tremor kicks into top gear. Broken sleep with nightmares so vivid I sometimes wake terrified and silently screaming? Writhing dyskinesia? Constipation? An inability to think more than one step ahead? The list goes on and on and on.

No. The very worst thing about having Parkinson’s at 39 years old is the terrible effects that my illness is having on my family, especially my wife and kids, who are now 5 and 3 respectively. The pain I feel watching them suffer and worry about me is sometimes unbearable. Of course, as a husband and father all you want to do is to protect them from and to fix the problem. But when something that is happening to you IS the problem, and when that problem is incurable and progressively gets worse and worse, the sense of helplessness is acute.

I see the pain my family are in and I am wracked with guilt and anger, not at them or myself but at this greedy insidious devil which is stripping me of my ability to do pretty much everything, much much faster than I ever understood was possible. I feel sick inside knowing that I am the cause of their torment – the anxiety, the worry, the struggle to understand why daddy can’t do things.

The only thing I can do is to try my best to keep as well as I can, to take my pills and drug infusion, to exercise and to participate as best I can in family life.

I saw an interview where Michael J Fox was asked about DBS surgery and his response was that the air wasn’t supposed to touch your brain, and as it already had touched his in similar brain surgery, he wasn’t keen to try it unless it could cure him completely. I appreciate the risks that invasive brain surgery holds but realistically I can’t see that I have any choice. If it can relieve my symptoms better than my current drug therapy then I have to try it. As much as for my family’s sake as my own. Because I don’t have Parkinson’s. We have Parkinson’s.

As much as I appreciate all the love and support I am shown, please spare a thought for them, as I am sure sometimes it is worse for them than me.

Do you have REM behavior disorder?

just the nightmares. and the outloud swearing telling imaginary people to f*** off. wife loves it. yeah right.

My grandfather has Parkinson's. I see firsthand what it does. I just came here to say good luck with your battle, my friend. Stay strong.

you are very kind thank you

Congrats on the surgery I hope it improves your life. My mom has Parkinson is about to turn 70,how much did it cost and how do I contact doctors that perform this surgeries? Any piece of information will be greatly appreciated. Praise science!!

I live in NZ. We have a public health sytem which while not perfect, is good. I pay nothing for what is about and NZ $100k op. Its not done privately here, and they do about 12 ops a year only. I gio lucky.

Relevant to me, have you had a slight essential tremor most of your life?

nope, just a recent one and I;m pretty shaky now

I just want to say thank you for doing this.... my grandfather had parkinsons and passed away 20 years ago. Just found out my Dad has the marker for it as well... it's encouraging to hear about this surgery and all of the progress that has been made since my grandfather passed. I wish you all the best - and please keep us posted after your Feb 11 procedure!

thanks so much

enjoy eating levadopa like candy.

side effects though are shit house. I have bad dyskenesia (writhing) which is in part a drug side effect but alos part of the profile of early onset Parkinson's.