A standpoint of status

Over the last three months, I've noticed a sharp decline in my ability to perform certain tasks.  Specifically, during the warm-up sessions at Parkinson's Boxing workouts.  Almost any coordinated movements between my hands and feet no longer happen.  If I get my feet going my hands stop and vice-versa.  Even marching in place has become nearly impossible to do.  So as I prepared a list of questions for my next neurologist appointment, I began to realize just how much functionality I had lost. I made a list of things I could no longer do and began wondering what would be the next thing to go.  I mentioned this to my wife and her comment, in return, struck a chord.  "Look at the positives", she said, "don't focus so much on the negative."  "Easy to say, hard to do", I thought.  Then it hit me, I've always been the optimist. Overly so, if you've ever worked with me on any project.  So what was different now?  I spent my career motivating others to get the desired results, now it was time to turn the tables and do something to motivate myself.  Movies, for me, have always been a good source of inspiration and motivation.  I remembered two moments that resonated, both from Apollo 13 and both from Flight Director Gene Kranz.  He was an amazing leader and can be attributed to some very motivating quotes. Who can ever forget "Failure is not an option".  That said, I'm not sure if the  lines I picked are actual quotes of Mr. Kranz or the writers of Apollo 13.  Either way though they certainly worked for me.  

     

Gene Kranz (Flight Director):

"Can we review our status here, Sy, let's look at these things from a... from a standpoint of status. What have we got on that spacecraft that's good?"

Sy Liebergot (EECOM):

 "I'll get back to you, Gene."

The second quote occurs a little later as Gene overhears two NASA directors discussing the low survival chances for the crippled spacecraft:

“I know what the problems are Henry, this could be the worst disaster NASA has ever experienced.”

Gene Kranz:

“With all due respect Sir, I believe this is going to be our finest hour.”

Both quotes demonstrate an ability to focus on the positives. Even when everything and everyone around you has nothing but bad news it's important to remember to find those positives.

For me, a new perspective; things could be a lot worse.  Each day is a blessing and should be lived like it.

Battery replacement time for DBS system

The initial installation of my DBS unit came with a non-rechargeable battery pack that was supposed to last 3-5 years. Unfortunately, the severity of my symptoms requires a higher complexity of programming and higher voltages both of which use more power resulting in the shorter life.  My battery signaled the need for replacement almost exactly at the two-year mark.  It was now decision time. Go with the same battery pack knowing that my symptoms will continue to get worse thereby draining the battery even faster. Or, go with a rechargeable battery but requiring me to make time to recharge the unit every day. My worry was whether I'd be disciplined enough to charge it every day. I think the answer to which one to get was clear.  With how quickly the initial battery drained and with the possibility of going through it even faster the next time, I decided on the rechargeable.  Additionally, there would be fewer battery replacement operations in my future since the rechargeable should last at least 10 years. Now I just had to persuade the surgeon. 
Fortunately, for me, it didn't take too much convincing.  When my neurosurgeon looked at the short life span of the original battery as well as my current and future electrical demands, he agreed that the rechargeable would be the correct choice.  He did jokingly say that if I go with the rechargeable unit, I wouldn't get to see him as much and that he would miss me. I blurted out "Don't worry, I would come visit you."  He smiled but a loud chuckle came from the nurse in the room.  She knew sarcasm when she heard it.

It's been over six months since I had the rechargeable installed and all-in-all its been a great choice. The daily recharge hasn't been an issue. I am up between 4-5 am everyday (thank you Mr. Parkinson's) and my mornings have become pretty standard: Let the cat out, make coffee, let the cat in, then sit and read for about 30-45 minutes.  It's during this time that I do the recharging.  With my current demand, 30 minutes is all I really need to maintain between 75% and 100% charged.  I've even missed a day and only dropped to 50% charge status.

The system I have is very nicely designed. Thank you to Medtronic for your engineering skills.  It's easy to use and does it's job quickly.  I simply place the recharging pad onto my skin directly over my battery and press go. The system checks the alignment and tells me how close I placed the pad to the optimum spot.  The closer you get to that sweet spot the better connection it has to the battery allowing more power to be transferred in the same amount of time. If anyone from Medtronic is reading this, it would be nice if the system told you which way to move the pad to get better alignment. The system comes with a strap so you can walk around while charging if you want.  I thought it made me look more like a crossing guard so if I do have to get up (probably to let the cat out again) I just hold the charger in place with one hand.  Oh, the recharging unit itself is portable since it is also a rechargeable battery that only needs to be recharged about once a month.  One other note that I didn't realize would be such a big benefit but actually is the best reason to get the rechargeable version.  The unit that is inserted into your body is thinner than the non-rechargeable one.  So the complaint I mentioned in a previous blog about always feeling it there when I moved around is almost completely gone.  I can lie on my side now with no tugging or it getting in the way.  Definite Bonus!

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.