DBS - is there a negative?

In my last post I discussed how DBS surgery has helped me continue working and allowed  the use of my left hand again.  Nothing I am going to tell you here should leave you believing that I have any regrets of having the surgery.  On the contrary, it can be life changing but its not free, figuratively or otherwise.


The negatives:
1) The procedure - It is not painful however it is long. Once you are 'framed' into that chair you aren't moving for 5-6 hours.  There are plenty of people around you to help you get comfortable.  My back started to bother me and my legs got real jumpy by the end.  I think my body had enough.  Not a big fan of catheters either.  There was no pain when they implant the temporary posts to hold the frame to your head or when they were removed.  The hospital staff does a tremendous job of trying to keep you comfortable.  It's just that it is a long procedure and it does drain you. 

2) The battery implant - The battery pack is just plain annoying, even after nearly 2 years with it. Most of the time you don't really realize you have it but when you reach across your body for something, a little tug reminds you it's there. When you lay on your side it gets squished and uncomfortable.  It doesn't hurt you just know its there.  Bothersome is probably a better word. Also, it does wear out.  I haven't had to replace mine yet, I'm guessing by year three, but it does require another day-surgery when it comes time. I'm opting for the rechargeable one next.  I hope to get 10 years out of that one. 

3) The adjustments - It takes months to tune in the device as everyone's symptoms are different and there are hundreds of combinations of settings to go through to give you the best benefit. Even then, my symptoms aren't the same everyday or even the same throughout the day so, it's a bit of what's best in general.  My biggest problem with the adjustments is every time I have one scheduled, that day for some reason, I am at my absolute best. FRUSTRATING!  My neuro still manages to dial it in enough plus gives me enough adjustments in the remote to compensate for fluctuations.  

4) The cost - You need decent insurance for this surgery.  Typically its between $50-60k for the surgery then the follow-up visits are every 3 months for a while until it goes to twice per year.  Travel, time-off for surgery and appointments, plus the cost of the appointments themselves can get expensive.

5) The limitations - Its not a miracle cure for all that ails you.  In my case it works extremely well for the tremors and the slowness of movement I was having in my left hand.  Unfortunately, as you read in my previous blogs, there are over 80 symptoms that Parkinson's can cause.  Your Doctor will determine the best placement, probe and settings to control the worst of your symptoms but you will still have symptoms. Additionally, it doesn't slow the progression of the disease.  Its not meant to be thought of as a cure, more of a crutch.  What it can do it does very well but there are limitations.

6) The future - If you need it, you need it.  You can wait for the next best thing to come out (and it does and just did).  However, what they have out now works very well for the symptoms it can control.  Plus, its a proven surgery with thousands of success stories.  Don't let anything get in your way of being the best you can for as long as you can.

No one knows your future or how quickly you are going to progress.  In my case, I went from diagnosis to having the surgery in 5 years. I'm guessing that's because my Neuro called my disease "aggressive".  Yours will most definitely be different.  Listen to your Doctors, if you don't trust them find someone you do.  Even with the negatives I've listed, this surgery can give you back a part of your life you may have already thought you've given up. 

Talking to your employer about Parkinson's Disease

I was coming up on a year since diagnosis and the next Manager's meeting in Chicago was fast approaching.  Based on my symptoms and how much stress affected them now I was sure I wouldn't be able to get through the meeting without someone noticing.  I really didn't want to have to lie about any shaking, but that wasn't my biggest concern. When under stress, I was having great difficulty finding the right word and then stuttering trying to get it out.  While you can't really make your career at these Managers meetings you certainly could harm it.  As I continued to try and build recognition for my Plant, I didn't need to cast doubt about my leadership ability.  But, then I'm left with the cloud of doubt I mentioned in an earlier post.  If I tell them about my Parkinson's will Corporate be less inclined to help my plant grow as a trade-off for keeping my stress to a minimum?

I needed to talk to somebody that went through something similar.  Luckily for me I have a friend in Corporate that recently disclosed she has lupus.  I knew I could trust her to not only be honest but not to disclose what I was about to tell her.  Her advice?  Tell them!  She laid it out pretty easily for me:
1) I would be surprised at the support I would get
2) No one would feel sorry for me. 
3) I would have a lot less stress because I didn't have to hide my symptoms

I still wasn't sure so she gave me the name of the Executive she confided in to get his take.  Again, I would have to rely on him not to disclose anything until I was ready but trying it out on someone I looked up to would be just the practice I needed to tell everyone else.  So I arranged a meeting in Chicago with him.  What a relief it was to hear the confirmation of support I needed plus the promise not to disclose anything until I was ready.  It gave me the confidence to come back, tell my staff, my plant operations team and my boss.  I think most people would be surprised at the support they get and may not realize there is someone they can trust out there.  If you do share your diagnosis and don't get a positive reaction from your employer, would you really want to work there anyways?  I know every situation is different (just like this disease) and finding a new job with Parkinson's creates a whole other set of problems. I've recently discussed a situation with someone where it was NOT in their best interest to tell the employer.  Luckily my experience was like many I've read about, a good one.  You may fool them for a while, but eventually your employer is going to start noticing things.  It might be better for you to control the story.  Feel free to comment and get the discussion rolling!

Need more advice?  Look at these sources for their experiences.

Links to information on talking to your employer

Good article from ADPA on telling your employer here 

Excellent story by a neurologist that has Parkinson's disease  here

NY Times article mentioned in earlier post here

Michael J Fox Foundations advice here

Interesting article from about health on talking to your employer and coworkers here

NPF's advice on talking with your employer here

Working with Parkinson's here and here

Talking with your employer from the Parkinson's hub here

Trying to get a job when you already have Parkinson's here

Job accommodations  here


I've created a links page to accumulate interesting topics found regarding Parkinson's.  Just click on Useful links on the right column.

Up next:  Time to start medication... or not?

Day 1 - What am I doing?? My road through Parkinson's Disease

I've decided to take my Parkinson's journal public.  As king of the introverts, I have no idea why.  I've read many studies on Parkinson's making people more creative. (Link to one study here).  Maybe this is how I will start to express myself now that my exterior is more Terminator-like than human.  Maybe no one will read it and it'll just continue to be me writing to myself.  Either way, I hope to entertain, challenge and inform those of you bold enough to read what I am thinking.  As promised in the title, this blog is fundamentally about Parkinson's Disease.  I can't promise I won't occasionally drift into such riveting topics as the best spaghetti sauce or what's better pie or cake. But, I do promise to keep it to a minimum.  I figure there must be 100 other blogs by now strictly focused on spaghetti sauce and I don't want to tick them off and have them start writing about Parkinson's!

The plan is to walk you through my experience leading up to and after diagnosis of Parkinson's Disease.  I also will be providing various links to articles on the topics I discuss. After we get up to date, the blog will turn into what I am experiencing now as well as useful links and information (we must have the pie/cake debate).  An example:  Did you know it's been shown there are up to 49 (update, I've found 70!) different symptoms related to Parkinson's Disease?  In a future blog, we can review them and discuss it.  Sound fun?  Okay, maybe that's a stretch but how about at least interesting? Then let's go.

The Beginning
My first recollection that something was different than normal was the summer of 2010.  I just turned 46 and life was good.  While cleaning my fish tank, I noticed my left hand would go into what I would call the ‘Mannequin pose’.  As I reached into the tank with my right hand to clean the glass, my left hand would freeze just like a mannequin.  At the time, I had no idea why, it just did. I'd clean with my arm posing there at my side at a right angle.  I could move it, use it but, if I forgot about it, there it would hang, right angled to my body... frozen.   Looking back, grasping at symptoms I guess, there were other new things. Take working on the house for example.  I have never had a problem with heights, but a few times I noticed, when I got to the top of the ladder, the hand holding the brush or sometimes my left leg or sometimes both would shake.  I could stop it, but it would soon start up again.   At the time, all I could think of was that maybe this is just part of getting older.  Little did I know this was a tell-tale sign of what stress can do to exacerbate your symptoms.    Another strange occurrence was my lack of ability to smell.  I'm sure you've seen the candle catalogs in the mail.  You know the ones, they have scratch and sniff sections to smell the different fragrances.  Well, I couldn't smell them. Everyone else could scratch the surface and identify the fragrance, but I wouldn't smell anything. It was weird. So weird in fact that I used to lie about smelling it.  "Mmmmmm, smells good" was the standard answer or the occasional "Nice!" just to acknowledge and hopefully move on.  Too many times I would walk into the house to be confronted with "smells good, right?" referring to whatever delicious recipe my wife Rachel was preparing at the time. I smiled and lied then too.  I knew it smelled good because she's a fantastic cook but at that moment she could have been boiling socks and  I wouldn't have known the difference.   I never put it together that something bigger might be wrong.  
Such random symptoms, tremor, dystonia and a loss of smell never triggered an alarm.  Knowing what I know now it's obvious to what was wrong and over the next several months I started to put the pieces together.

Up next - Christmas and the hypochondriac - putting the pieces together