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. 

A three week wait and to tell or not to tell was the question

My appointment with the neurologist was finally scheduled and it was three weeks away.  Three weeks! What the hell!  I know it's supposed to be a slow, progressive disease, but I want to know if I have it NOW.

During these three weeks, I was on SUPER observation duty.  Every flinch would be examined and documented and triangulated to see if it fit the mold of Parkinson’s.  Yeah, I drove myself a bit nuts, but things seemed to be changing, daily.  I called it symptom roulette.  Every day you woke up and you would have a different symptom from the day before.  One day your arm hurt, another you'd have tremors.  You might be dizzy or you could just be achy.  But through it all, you woke up every night for a couple hours because Lord knows you needed MORE time to wonder what's going on inside your head.  Looking back, all the different symptoms had to have something to do with being on the edge of just enough dopamine.  Here, four years into this, I have good days and bad days, but it's not the randomness like in the beginning.  Don't get me wrong, the symptoms I have now are worse, just steadier and more predictable.  Not sure if that's a good thing or not.
During that three week wait for the neuro appointment, I had my annual Managers trip to Chicago. A trip to Chicago in January, I know, I know, it sounds nicer than it really is. Basically, you're in a beautiful downtown Chicago hotel and see nothing but the inside of a conference room for the duration.  I do leave with some good information and a bit more energized so it's worth it.  As I described in an earlier post though, stress brings out the symptoms and I would be neck deep in it for five days!
Backing up for a moment.  At this point, with no diagnosis and very few outward symptoms, I chose not to tell my employer of what was happening.  I have since but who to tell, when and how I did it will be the topic of a future post.  I know this is a hot button for many so leave a comment if you would like to discuss it sooner and I'll get back to you. Or, you can read more about the topic here.   So I'm in Chicago and have to be what I call "on" from 7:30 am till 8 pm for nearly five days straight.  Usually these conferences are just three days, but with my luck, they needed us for an extra two this year.  Oh boy...
Every day was another spin on symptom roulette, but I was able to keep it together for the most part.  During one lecture the muscles in my forearm cramped.  I don’t mean just sore, it felt like the muscles were trying to twist their way out of my arm.  I stuck my arm under the table and after five minutes of intense rubbing it went away.  That evening, I was playing a card game, called horses (ask and I'll tell you about it), with some other Managers.  I won a couple of hands and had a pile of quarters that needed to go back into a plastic cup so I could carry them.  I was able to slide the quarters into my left hand but couldn’t manipulate my fingers correctly to get them to fall into the cup.  A bunch went on the floor.  I felt the Head of Engineering standing behind me staring.  My only hope was that he thought I was drunk even though hadn't had anything that night.  Weird position to be in.  Hoping someone thinks you're inebriated to hide a possible neurological disorder.  How messed up is that!  The only other noticeable symptom I had on the trip was stuttering.  Under stress I was having more and more trouble getting the words to form correctly.  VERY frustrating. 
A few nights after I got back from Chicago, I took all the kids out for dinner and a what happened next was eerie.  Keep in mind I have not shared my problems with anyone except my wife and she swore not to tell anyone.  So, we were sitting at a restaurant and my daughter noticed her brother's eye was twitching.  Both my daughter and I launched into his excessive caffeine consumption as the probable cause.  My son looked me in the eye and asked if anyone in the family had Parkinson’s.  I was stunned.  I almost lost it, but calmly asked why he would ask such a question.  Before he could really answer, my daughter jumped into describing how bad Parkinson’s is and that he wanted no part of it.  I lied – a bit – and told them how there are great meds for Parkinson’s out there and not to worry because I was sure it was the caffeine.  It was really a strange experience  and one I probably handled poorly, but I never expected that question, that night. Especially so soon with all that was going on inside my head at the time.
It’s now the weekend before my appointment with the Neurologist and I’m a bit nervous.  Not because of what he might say but what he might not.  I’ve come to grips in my own mind that I have Parkinson’s.  If he says I don’t, BONUS, I get a ‘get out of jail free card.’  My fear is however that he doesn’t know what it is and I am subjected to two years of testing while they try and figure it out.  Don’t get me wrong. I don’t WANT Parkinson’s but knowing what you have is easier to deal with than not knowing.  And, being the eternal optimist, I believe that if I do have Parkinson’s it will be on the mild side and I will be able to deal with the changes easily.  We’ll see.  Three days to D-day – (Diagnosis day).
Sunday, January 30 (D-1).  My face feels heavy today, that’s the best way I can describe it.  For year's my wife has called me ‘the Terminator’ because of my lack of emotion.  I attributed most of it to being German however I wonder how much of it might be Parkinson’s.  Funny how I attribute things I feel to an incurable disease that I haven’t even been diagnosed with yet.  But still I wonder if the Parkinson mask so frequently talked about has been a problem longer than I have known. By the way, great link for describing this here.  
I think about how, when and if I will tell people once we figure out just what exactly is wrong.  The kids will be tough; I don’t think I would tell my youngest daughter right away and probably not for a couple years if I can help it.  My parents and my sisters will be easier. I just don't want anyone feeling sorry for me.  That would bother me more.    Work is another tough one.  It could have drawbacks but I guess it really depends on how bad my symptoms get.  If I don’t shake and stutter there is no point in telling anyone yet because it's not affecting anything.
I feel really bad for my wife, Rachel.  I know she didn’t sign up for this and she’s been nothing but supportive.  I hope and pray that if this is Parkinson’s it’s the milder, slower progressing kind.  I'm only 46 but, we have many plans for after retirement and taking care of me wasn’t one of them.  Mr. Optimism keeps thinking that in the 10 years I've got before I assume it "gets bad" there will be a major breakthrough.  I can only pray.

Up next: D-day - I hope

Christmas and the hypochondriac

I love Christmas.  I love the cold weather, snow (I'm originally from Buffalo so go figure) the lights, music and setting into motion the plan to get everyone in the family a gift they didn't expect. It generally puts me in a good mood.  Shopping, however, can sap some of that mood fairly quick.  I don't actually mind shopping.  I'm a strategic shopper.  I plan my route and stores and I'm usually in and out quick.  I guess though, I really don't shop, I'm more of a buyer.  I know what I want and where it is. I get it. I buy it.  Simple as that. Oh, if you go with me, I'll watch you shop, but that's not me.  So here I am in a store and everyone, it seems, is happily buying gifts for each other and conversing with friends and family.  Everyone seemed to be relaxed and having a good time shopping until...time to check out. The pressure is now on to get through the line and back to more shopping.  No one wants any delays in line in front of them.  You could almost see the thought bubbles over people's heads - "Put that checkbook away lady, we don't have time for that."  "Great! The guy checking out grabbed the shirt with no tags, PRICE CHECK PLEASE!"

STRESS

I didn't know it at the time but if you want to see your Parkinson's symptoms come out just get stressed.  Medicine or no medicine you will not function as you're used to functioning.  Here is an article on that subject.

  I got ready to purchase my gift with cash and when the cashier told me the total I tried to peel off some bills to give to her.  As hard as I tried, I couldn’t get the bills apart with my left fingers.  I couldn’t move my fingers the correct way to get them to separate the bills so I could count them out.  The more flustered I got the worse it became until finally, I gave up.  I handed the clerk all the bills, smiled and covered with a comment that my hands must still be cold or something. She smiled, took what she needed and handed me back the rest. I filed that 'symptom' away for future reference.
Another clue. Sitting at my desk at work that same week, with my left hand resting, the muscle on the back on my hand, between my thumb and forefinger, started pulsing.  Nothing major, just a steady beat.  I watched it for a minute, moved my hand and then it stopped.  Curious I thought, I wonder if I can get it to do it again.  Wait for it....., yup, there it is again. It's like that one muscle is listening to its own music station and pulsing to its own beat.  Now it's got me curious, so I started to keep track of my ‘symptoms’.  I keep putting that word in quotes because, at the time, I had no idea what I was getting myself into.  Plus, as a closet hypochondriac, I was trying not to be too worried.
About the hypochondriac bit.  I never considered myself one, I just thought of myself as extra observant about how my body worked.  If something changed, I knew about it.  Sometimes I would question it, maybe look it up, but never obsess about it (like a true hypochondriac would I told myself.) I was always the one to tell the Doctor what was wrong with me based on my observations.  I have a good Doctor, who I'm sure rolled his eyes when he saw me coming the once or twice a year I needed him.  He knew that I'd have a list of my symptoms and was looking for a confirmation on my diagnosis.  I had about a 50% hit rate - hey it's better than the weather people!  This time though, it seemed different, so I made a list of everything I could think of that I had noticed and looked it up.  Here is where my life began to turn upside down. 

Up next: Symptom count and the first Doctor visit