You don't die from Parkinson's

I'm linked to a lot of sources that feed me articles on the internet having anything and everything to do with Parkinson's.  This allows me to follow much of the latest research as its happening.  Along with the scientific articles though come mainstream media reports on people with Parkinson's and the people taking care of them.  You get the occasional heart warming story, but many times what's reported is wrong or, at least, I hope it is.  

Everything I understand about this disease boils down to this one truth I've held on to:  

You don't die from Parkinson's you die with Parkinson's. 

So why does this have me riled up today?  I'm tired of reading articles from people assuming the worst.  Radaronline wrote an article on how bad off Michael J Fox looked recently.  Their article commented on his need for help getting into a car, slurred speech, speculation on the probability of his need for a wheelchair in the near future along with developing dementia.  Anyone that did five minutes worth of research would realize how inflammatory this reporting is. Two other articles reporting the same sighting of Mr. Fox comment on how good he looks and don't wildly speculate on his medical future.

To make matters worse, their article continues by comparing him to Robin Williams and his tragic suicide.  Are they suggesting Mr. Fox is on the same path?  Again, if they would have taken a minute they would have realized Mr. Williams actually had Lewy-body dementia which is a much harsher disease.  Mr. Williams was clearly depressed and distraught and the comparison to Mr. Fox was not only unjust but harmful for people that are not well informed about these diseases.  But headlines sell papers so I guess it doesn't matter if it's true or not.  It's easy to look up, Parkinson's is a boutique disease. Everyone is on their own path. What symptoms I get can be vastly different in type, severity and speed of decline from the next person. 

Maybe I'm naive or maybe just misinformed.  You see, I'm the eternal optimist.  I rarely see the bad side in situations and always figure there is some way I'll pull through. This may not be the best way to view life but it has managed me well these 51 years and I think keeps me happier than the alternative.  I wouldn't say I have my head in the sand, quite the contrary, I'm wide eyed and ready for that next big breakthrough.
It got me wondering, though, why do so many people say a person 'succumbed to Parkinson's' or more plainly 'died from Parkinson's'?  So I started digging.
The center for disease control lists Parkinson's Disease as the 14th leading cause of death. But how could this be if you don't die from Parkinson's?  The answer, unfortunately, is semantics.  Parkinsons's affects so many different areas of the body you knew one of them would have to sneak up on you.  Top two you ask? 

• Pneumonia 
• Hitting your head in a fall.

Pneumonia with Parkinson's people is caused by improper swallowing or dysphagia.  Food particles end up in the lungs which can lead to the development of aspiration pneumonia.  Parkinson's induced balance problems are the leading cause of falls.
To get ahead of the curve, I set up an appointment with a speech pathologist.  They will look for the tell-tale signs of problems swallowing with Parkinson's and with therapy, delay or even eliminate the possibility of dysphagia.  As far as falls go, short of wearing a helmet, I'm going to have to do more research.  I do know the first thing that jumps out is getting rid of throw rugs. Also, exercise and vitamin D to strengthen those bones.

Next up:  My visit to the Speech pathologist

Good information on PD-related falls here and here
Excellent study on both speech and swallowing problems in PD here

Time to tell and the new emotion coaster

It's been a day or so since the tentative diagnosis.  This gave me some time to figure out how I was going to tell my family and in what order.  I called my Dad first.  We talked for about half an hour about what was going on and he was reassuring.  It actually felt good to tell someone else what was happening. It's not that I was afraid of what he might say as I knew he would be helpful.  It's that I don't want people feeling sorry for me or for that matter, worried about me. Yes, it's a defect in my psyche and goes back to never asking for help, but I'm too old to change now. As I find out later, this is not healthy. (yes, more foreshadowing to future blogs).  I called my sisters next.  As expected they were both very sympathetic and helpful.  Now for the hard part, my kids.  I called my oldest daughter first as she was the one I was most worried about.  In a previous blog, I mentioned how she freaked out about how bad Parkinson's was when my sons eye twitched. I was worried how I would handle her reaction.  Growing up, she always seemed to think older than she actually was. This has helped her, I'm sure, become the excellent therapist she now is.  But, I was worried that a bad reaction by her might get to me.  She took the news as well as anyone could and offered tons of support and love.  Just what I needed, what a relief.  I called my eldest son next and again, nothing but help and encouragement.  This was going better than I thought it would by far.  Now on to my next son.  If anyone was going to get me to cry it would be him.  I decided I really wanted to tell him in person so I could show him my symptoms were not all that bad.  He asked a bunch of questions so I’m glad I chose to do it that way.  I got through all of this without shedding a tear.  I didn't want anyone, especially the kids, to think I was worried  I decided against telling my youngest daughter just yet.  She was only 10 and didn't want her to stress over something she couldn't see or understand.  As with most families, she, being the youngest, tends to listen a lot and pick up on family conversations. It didn't take her long to figure out there was something wrong with Dad.  We talked about it and I reassured her things would be fine.  I gave her a job to keep track when there were tremors in public.  It may have helped because now she was part of looking after me.  In retrospect, I'm not sure I handled it correctly by not telling her up front, but so far there seems to be no permanent damage.   I don't know if one way is better than another to tell your family you have an incurable, but non-life threatening, progressive, but more than likely a slowly progressing disease.  I guess every family is different and you'll have to judge each person by how you think their reaction will be.  I thought about a group setting but quickly ruled it out.  It sounded too formal for me.  No, I needed to downplay this as much as possible for my own sanity.  A good article on the Parkinson's secrecy can be found here.  If you get the chance to read Bill Geist's book, do so.  It's a fun read with a brief chapter on Parkinson's. 
 I still decided against telling work yet.  This is where I really did not want people feeling sorry for me.  I couldn't help but worry that Corporate would think "we can't give him that project, he has Parkinson's"  or "Lets not expand in his plant, we don't want to stress his Parkinson's." My symptoms were mild enough, I thought, that I had time to show them what I could do then explain that all that time I had Parkinson's.  That way I could show them there was no need to worry.  Over thinking this?   Probably, but it worked for me.  I did decide to tell my closest at work ally though.  I knew I could trust him to keep it quiet.  But, more importantly, I needed someone that would let me know if people were noticing my symptoms.  I highly recommend this because people will talk among themselves long before they will approach you.  Usually, by the time you feel the need to tell people, they have already figured it out.  This way, you can have some control over when its time to tell the people you work with.  Most likely won't work for everybody, but it helped me.
I received a call from the University of Rochester (U of R).  They confirmed my appointment with a neurologist but had this offer.  If I agreed to be in a Michael J. Fox trial (PPMI) I would be switched to the neurologist in charge of the study for the hospital.  I looked the neuro up and she had an unbelievable background including sitting on the Fox foundation board.  I could get top-flight care, for free.  All I had to do was submit bodily fluid samples two times a year and take some memory tests.  Seems like a no-brainer, right?  Oh, forgot to mention, some of the fluid they want comes out of your spine!.  In this study, I would end up getting up to five spinal taps.  Hmm, not real thrilled with that.  I'll have to think about it.  

The days were now turning into weeks of relatively minor symptoms.  There were no big changes and I was adjusting to day-to-day life as a new PwP (Person with Parkinson's). I did have what I'll call an ‘episode’ after a stressful Saturday morning at work then rushing around to get some major chores done.  I was shot the rest of the day. Absolutely no energy or even the will to move.  It became amazing how much stress fatigued me now. I think I could overcome the fatigue, but the apathy is another story.  Apathy, or the lack of desire, worried me the most because I have always been the one to say "let's get it done" and work as long as it took.  Now, I could be easily convinced to do nothing.  Not good.  This would be important to fight otherwise it could rule and possibly ruin my life.
 I’ve been spending too much time reading other parkie blogs too.  A few have been helpful, but there are a couple that have been rather depressing.  I keep telling myself to be optimistic and that everyone else’s symptoms won’t be mine, but it’s hard to read.  Some of the people have had it pretty bad. Then, there was a story at the end of the nightly news about a record producer with Parkinson’s. I cried at the end of it. Only the second time I cried because I have this disease but, as it turns out, not the last time I cried because of Parkinson's.  Slight twist of words there but you'll see what I mean in a moment.  What made me cry at the end of that news story was the guy takes 10 pills a day and yet he still LOOKS like he has Parkinson’s.  Shuffling gait, pan face and tremors.  Made me sad. I should be looking at the bright side, the guy is still walking, still working, still has a life, but it just hit me kind of hard.  Will that be me in 10 years? I tried unsuccessfully to hide my tears.  I didn't want anyone feeling sorry for me.   
Okay, so after all these years I am finally getting in touch with my emotions. This is a good thing, right? Then here we go as it's all aboard the emotion coaster! I got a card from my Mom and it was great!  She wrote me a very supportive and loving note that really made my day.  Everything was starting out well.  I was getting things done. I was in a good, no, great mood. I was happy. Then, just a few hours later and before I knew what was happening it felt like I could cry at any second. This sad feeling just overtook me.  It was gone by the time I left work, but it wouldn't be the last time I felt that way.  A whole new chapter had started and I had no idea, at that moment, what it meant.  If this was from Parkinson's, it is a very weird disease.
I never knew when my emotions would flip.  In a short amount of time, I went from someone that was always in total control of their emotions to someone that now cried at commercials.  I would cry while belting out an 80's rock song on my way to work. Who cries at Hagar singing "Can't drive 55?"   Watching a sad part of a cartoon with my daughter or an emotional sequence in a movie whether at the theater or at home produced HUGE tears.  They got difficult to hide.  I had no idea why it was happening and I couldn't control it.   The tears wouldn't last long and I wouldn't stay sad, but it started me looking at all the symptoms of Parkinson's... could this be my lead into depression?  Could it be I was approaching 50 and a mid-life crisis?  Time would tell. 

Up Next: On becoming a radioactive lab rat for Fox