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.

Speech therapy Round 2

A frequent conversation starter between me and anyone new:

"Hi, I'm Don, glad to meet you." 

The response, "Hello Dan, It's nice to meet you."

The first few times I used to think "what is wrong with these people, can't they get my name right?"  This has been going on for about a year now. With more and more people from all walks of life thinking my name is Dan, I've decided to either do something about it or buckle to the pressure and change my name.  

 My second visit to the speech therapist was just as interesting as the first (see the previous blog for that adventure.)  It would seem my facial muscles and tongue have been taking advantage of the lower amount of signals from my brain and have been getting lazy.  The exercises my therapist gave me will help whip them into shape. Some examples:

• Open your mouth - come-on...  wider (I'm starting to sound like my therapist!)
• Stick your tongue out - further - feel the stretch
• Now try to touch the tip of  your nose with your tongue.
• Purse your lips and say ooo....
• Now make a very wide smile and say eeee...
• The LSVT LOUD® training was interesting .  Holding an ahhhh sound with your mouth wide open for as long as you can up to 30 seconds.  Repeat - a lot.  Then start low and ramp up to a higher pitch again holding for up to 30 seconds. Repeat.  Now reverse it and start high pitched and end low. Repeat.

Do these for a while and you can really feel it in your throat.  Just like exercising, the muscles get tired.
One of my initial signs of Parkinson's was the ability to trigger a tremor by holding my hand out straight and twisting my wrist. It's part of cogwheel rigidity.  Well, I've run into another trigger from this last exercise that's supposed to give me back some control and flexibility in my face. Scrunch your lips up like you are going to blow a kiss.  Now shift that smooch as far left as you can.  Now as far right as you can.  Do that 10 times.  When I try, I trigger a facial tremor.  I can't always get my lips to go right without some twitching and tremoring. Frustrating.

Parkinson's will continue to degrade both swallowing and speaking as well as many other symptoms. Unfortunately, the goal of these exercises for is only to prevent me from getting any worse.   Nothing yet can reverse the degradation.  
So if we can't reverse it, what's the goal?  For me, it would be to reduce the amount of people asking me to repeat something.  Short of that, it just would be nice to be called Don again.

Parkinson's, Swallowing and the Speech Pathologist

"It's stuck,"  I thought.  For a while now I've had some difficulty swallowing consistently.  At times, it felt like the food was stuck about halfway down.  Plus there was the occasional 'went down the wrong tube' coughing fits.  None of this really worried me until I did research on the previous blog - you did read it didn't you?  Go ahead, we'll wait......

I didn't like the thought of possibly aspirating anything into my lungs which could lead to pneumonia.  To try and stay one step ahead, I set up an appointment with a Speech Pathologist.    

The exam - was really cool!  I've always been enamored by how my body works so I was really looking forward to being able to stand in front of a screen and watch as food and liquids went down my throat.  It didn't disappoint.  We started with the obligatory barium swallow. (I believe there's a reason you don't find Barium flavored ice cream, yuck.)  This was followed by several types of liquids and solids:  water, an egg salad sandwich, pudding, cracker etc.  Afterward, I got to watch as they played back each item.  In many cases, you could see that not all of the food would go down my esophagus on the first or sometimes the second swallow.  There seemed to be a little pocket where food was hanging out until I swallowed hard to force it down.  The technician did her best to explain how swallowing worked along with all the different muscles involved.  She also explained that with Parkinson's there are delays or smaller movements that interfere with the process of swallowing.  Just as I feared, this disease is affecting me here now too.

The therapy - I was recommended to see a speech and swallowing therapist to try and combat what was starting to happen.  Food getting stuck was one thing.  Aspirating food into my lungs was not the road I wanted to be on.  No, I'd like to put off pneumonia for as long as possible if not avoid it all together, please.
The therapist started by watching how I spoke and then watched as I swallowed some items.  Her comments were interesting such that I have heard Parkinson's described many different ways but this was new.  She said, "Parkinson's wants to make everything..". "Slow" I piped up.  She said "yes, but regarding muscles, it really is trying to make every movement small." When I thought about it, especially with movements of the face, the muscles really don't want to move much, therefore, your voice gets lower and sounds more slurred. In this instance, it was primarily my tongue that was not holding up its end of the bargain.
She described the tongues role in swallowing.  It's kind of the driver that gets things started down the esophagus.  In Parkinson's the tongue either moves too slowly or not completely back (or both) to properly aid in forcing food down the tube. 
So what to do.  We focused the remainder of the visit targeting swallowing as that can be most detrimental to my long-term health.  We started with:
Buttercup.  Say it out loud.  Annunciate! was the demand from my therapist now cracking the whip. (Side note: if you have a choice get a therapist that will push you and not let you fall into old habits.  I know what they are asking is hard but if it was easy we wouldn't need them now would we?) So say it with me...  BUT-TER-Cup.  If you do it right you will feel your tongue move back and forth in your mouth.  
Say Earl.  Now say it like you mean it.... Eaaaarrrl, puckering those lips.  Say it correctly and you feel the tongue hit the back of the throat. "Now give me 10 of each of these 5 times a day" was the homework assigned.   One note of caution, correctly done in the presence of others will cause laughter from family members or strange looks if you're in public.  Don't get me started on if you do these in the presence of someone named Buttercup or Earl.
There were several other suggestions she had to help prevent choking, especially with thin liquids. One was to take a short breath and slam your larynx shut by making a hup sound then hold your breath.  Now take a drink and magically the liquid goes down the correct tube.  The problem with this?  Trying to remember to do it before taking a drink.  Her recommendations at this stage of my Parkinson's was to concentrate on doing it more when my symptoms are at their worst, like when I haven't slept or at the end of the day.  

Next up - Second therapy session - working on proper diction or Who's Dan?