What we've got here is a failure to communicate

I've never been a huge talker, or a medium one for that matter.  As self proclaimed King of the Introverts, I like to sit back and listen while adding just enough to keep a conversation going.  But, there's a big difference between not wanting to communicate and not being able to.  So much of our day-to-day lives depends on our ability to speak clearly and be understood. Some daily encounters may include:
Having to call the Doctor's office and schedule an appointment. Calling the pharmacy.  Run a meeting. Calling customer service because the store lost your shipment, talking to your bank or the insurance company.  The sales clerk at the store needs your phone number, or placing your order with the person behind the meat counter. These are just examples of when you know you are going to have to speak and can prepare for that moment. Unexpectedly running into someone you know, or getting a phone call that you must take are now frightening scenarios to me.    
In every instance of conversation you need to be understood. Unfortunately, Parkinson's may have other plans. For me at least, its become a huge problem, so much so, that I avoid contact where I can.  I may come across as aloof, or maybe just rude but its easier to avoid conversations when you know you wont be understood. 
So what to do?
For starters, I contacted my neurologist to make sure my DBS unit isn't the cause.  I had a thorough exam where my speech (and swallowing) were tested and retested with the unit on and off as well as my status in the medication cycle of either "on" or "off".  In my case, the DBS unit was not causing any speech or swallowing issues.
I then went back to speech therapy.  This time I tried the Speak Out Program developed by the Parkinson's Voice Project which is now available in many areas around the country.  They taught me some skills to  combat the slur that has overtaken my normal voice. They concentrate on getting your voice louder which is typical for most patients with Parkinson's.   However, my problem is more complicated and a quiet voice isn't where I am struggling right now.  It is the formation, stuttering and speed that I can't always control.  Their recommendations include slowing your speech down by thinking about each word and forming it correctly.  It does work, however I have trouble doing that AND having a conversation at the same time.  Throw on top of that another Parkinson's symptom like word finding and you'll see what I'm up against. Word finding, the occasion where you cannot think of the word even though you know the word and can describe it, is very frustrating. Take the word drain for example.  I've used that word many times and can describe its function however at that moment in the conversation where I needed to say the word.... Nothing.  I couldn't  come up with it. 
Forcing yourself to slow down and form each word makes it very difficult, for me, to have a quick conversation. The best way I can describe it is by relating to something I said years ago regarding swinging my arms when I walk.  I can do it when I think about it, but, as soon as I stop thinking about it, I stop swinging my arms.  For people that don't have Parkinson's the exact opposite is true.  Try walking and not swinging your arms and you'll see what I mean. When I think about what I want to say I forget to slow down and enunciate.
So, what do people do to try and help?  They hear your struggles and almost always try and finish your sentence for you.  Unfortunately, their idea of what I am trying to say usually isn't what I was thinking.  I've been misunderstood, and even said somethings other than what I meant just because it was they only sentence I could utter clearly at the time. I say things that I think are understood only to find out later that it either wasn't heard at all or the person got tired of asking me to repeat something and just nodded their head.  Oh, and for another level of frustration, try talking to one of those digital assistants like Alexa, Siri or Google.

I think that it would be safer if I handed out a card prior to any conversation:

Warning! - Person with Parkinson's

For those that have to interact with me, please be patient and assume nothing because you may or may not have heard me correctly.

There are 50 muscles involved in swallowing but over 100 could be used in proper speech.  With Parkinson's fighting muscle movements it seems impossible to hope that I will ever be clearly understood again.   Maybe its time to rewatch Cool Hand Luke.

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. 

DBS after 2 years

It's hard to believe that it is coming up on two years since my implantation surgery.  Sounds weird saying it like that, "implantation surgery" and for you Star Trek fans, sounds very Borg-like.

So how has it been?  Initially, I would say very good.  I believe it is the sole reason I have been able to continue working at my job.  The initial tweaks removed the dystonia and painful cramping in my hand and eliminated my tremors.  DBS does those things very well.  However, as my symptoms fluctuate and constantly progress the system is having a harder time compensating or keeping up, as it were.  Each probe has so many adjustments that the tweaking could be endless, but, that's a good thing.  More, finer adjustments means longer adjustment appointments, however it gives the neurologist the ability to find the 'sweet-spot" with less side effects. My problem with the programming adjustments is that for some reason, I am always at my best when I see the Neurologist.  She makes these adjustments and asks how I feel.  "Great" always seems to be the answer but then I came in feeling great too. Just once I like to be seen at my worst - "There, adjust me now!"
One of the drawbacks to the surgery is the area they need to simulate is very near other important areas in the brain.  Not much room in there.  If my settings get adjusted too high, I get what can best be described as "leakage" into a nearby area.  In my case leakage into the area controlling facial muscles. This causes a noticeable slur of my words which when I'm "on" is fine and hardly noticeable.  But, when I'm sliding down to "off- state"  I am very difficult to understand and frankly get so frustrated I just make it worse. My Parkinson's symptoms tend to fluctuate day-to-day as well as throughout the day.  So expecting a device that sends out a distinct and constant pulse to keep up with all the changes is not something I would expect it to be able to do.  But, that said, when my meds are working, the DBS unit does a remarkable job.

So the big question remains "was it worth it?"  Absolutely.  The main reason I had the surgery was an almost useless left hand.  The tremor control was a bonus.  In some ways, now that my symptoms have progressed to both sides of my body, my left hand is more useful than my right.  I will have to work on that with at my next adjustment appointment.  
Next up:  Some of the negatives of the Surgery