Parkinson's Disease and Depression: Please tell me how to live

Gina Miller is a 41yo female suffering from both Parkinson's disease and depression. 

The death of Robin Williams hit close to home for me.  Too close.  He was one of my favorite comedians, and I was actually listening to the Birdcage on my iPod when I found out that he had passed away.  I thought it was another internet hoax, until the CNN app on my phone alerted me with the Breaking News.  I wanted to cry.  It was later that evening, while watching his last stand-up show, that the tears finally came.  I’ve never cried at the passing of a celebrity before, but this was one that I had grown up watching, and to hear that he took his own life shocked and saddened me all the way to my core.  This was a man that was loved by millions, but at that moment, he felt like he couldn’t go on. 

Over the next day or so, they announced that he had Parkinson’s disease, and that he hadn’t felt comfortable coming out about it yet.  My sadness deepened.  I have young-onset Parkinson’s disease, and this shook me in ways I could have never expected.  Suddenly the headlines are filled with warnings about depression, and how PD comes with depression as much as 60% of the time, and what we can all do if we are feeling depressed. 

The more I read, the angrier I get.  Not just at the news media, but I find myself wanting to throttle people I know and love.  The stupid things that come out of their mouths, and their sudden expertise on matters they know NOTHING about, and their unwelcomed opinions… I didn’t sleep for two nights. 

The last time that I didn’t sleep for 4 straight nights?  I tried to kill myself.  And I almost succeeded.  I spent 3 days in ICU and about 4 days in a locked down psychiatric ward.  I wouldn’t recommend that to anyone.  That was 6 years and 2 months ago.  To the day, and almost to the hour. 

All of these articles say that depression is seen in PD patients often before other symptoms.  Dopamine and serotonin work very similarly in the brain, this makes sense to me.  Do I think that depression is an early sign of PD?  No.  Do I think that sleep disorders are?  Yes.  You bet. 

Robin Williams was brilliant.  With brilliance comes a racing mind and sometimes, the inability to shut down your brain, even when you need to.  You may interrupt the people you love when they are talking, you may spend every waking moment in an almost manic state, or you may be almost Rainman-like in your ability to remember things for later, because you never know when that idea, that memory will be the one that you use in your next brilliant story, act, movie, etc.  It doesn’t mean that you suffer from manic depression, and it doesn’t mean that you have a specific illness.  Sometimes, depressed people are just depressed. 

People have said to me that PD is a poorly understood disease.  Not really.  We don’t know how to treat it in ways that will improve life completely, but we know it’s not fatal, and it’s permanent.  You will not die from PD alone, but you will definitely die with PD once you’re diagnosed.  Depression is what people do not understand.  You put these two things together, and you could have a potentially fatal situation. 

When you have PD, you can stumble.  The National Parkinson’s Foundation will issue a card for you that says: “I am not drunk, I have Parkinson’s.”  Even then, people might not believe you.  You can wake up unable to move or in excruciating pain, and only pray that it will not last all day.  You may have a doctor who says PD does not cause pain by itself, or that he doesn’t want to write a script for pain medication, that you need to see a pain specialist (who may say that PD does not cause pain).  You may take one of the dopamine agonists that can have deadly side effects when taken with pain medication – that makes life really fun. 

So yes, I guess PD does come with depression.  Tell me about a chronic progressive degenerative disease that doesn’t.  Please.  Because if I get to choose, I want that one instead. 

Imagine being 38 years old, and being terrified to tell anyone, including the love of your life, that you are starting to feel tremors.  And sometimes, those tremors are on the inside – sometimes in limbs, but sometimes in your chest, and that if you sit really still and pay attention, you can see them, but no one else can.  People will think you are nuts.  You will think that you are nuts. 

Tell me what it’s like for YOU to know that in 5 years, you might not be able to walk without assistance, or that you might be facing deep brain surgery to stop the tremors so that you can function for just a little bit longer in the life that you wanted to live.  Tell me what it’s like to know that this might be your future in 5 years, but maybe not 15, or even 20 – but to have your neurologist tell you that no one is still working 20 years after they are diagnosed. 

Imagine buying a house where your number one requirement is a bedroom and bathroom on the main floor so that when that day comes that stairs aren’t safe, you will be able to do life’s basic functions without too much assistance. 

Tell me what it’s like to have chronic, insane insomnia, with sleep so stressful and full of movement and crazy dreams that you can’t sleep next to the one that you love, and the doctor recommends sleeping on the floor or a mattress to prevent injury to yourself and others (and when you have a movement disorder, try getting up from that in the morning, when you’re stiff and in pain as noted above).  Speaking of movement disorders – do you know what the 4 major movement disorders are?  Multiple sclerosis, Parkinson’s disease, Huntington’s disease, and ALS/Lou Gherig’s.  Who wants to be a part of that club?  Two of those 4 are 100% fatal, always. 

Tell me which meds I should take, and which I shouldn’t, and which ones will work for ME, because every disease and disorder works differently for every person. 

Imagine having to choose between work and physical therapy, occupational therapy, and having to pick and choose which doctor’s appointments to set up.  Or getting written up because you have missed too many days (5) in a year, and that’s too many – even though you have a documented chronic progressive degenerative disease.  CPDD… that’s what I’m going to start calling them, I think. 

Have you ever taken 14 different medications on a daily basis?  All of which have some kind of interaction or side effect that may require a doctor’s note (sometimes from multiple doctors – if your neurologist prescribed one and your family doctor prescribed the other, this will happen).  And almost all of those medications were prescribed on a different day of the month and your insurance will only let you fill them 3-5 days early, so that at least 2-3 times a WEEK you are in the local pharmacy, and trying to explain to yet another new pharmacist that yes, you know the possible side effects and the possible drug interactions, and it’s still OK to fill the prescription.  And then having to call the doctor’s office to get a refill again, when the pharmacy loses it, can’t fill it at a different location, or refuses to fill it.  And then when you get the medication, your fantastic insurance tells you that you have to pay a $235 dollar a month co-pay for just 1 of 14, and you have to say I won’t take that one this month. 

Yes, you can work longer if you can manage your disease… but managing that disease can become a part-time job.  And when you’re already depressed, in pain, working a full-time job… there are days that you just want to give up.  Would I give up in the way that Robin Williams did?  I don’t know.  I’d like to think I am at a better place in my life and have people I can go to when it all seems like too much. 

But I remember a night 6 years ago, when I reached out and there was no one there.  I was called a drama queen, not taken seriously, told that I was just seeking attention, and a few other things – and I gave up.  I knew just what lethal cocktail would do the trick, and what I had in the house – and even 6 years later, I still know what combination of what would do the same thing.  I would go out quietly, in my sleep, like I believe most of us want to go when the time comes. 

My heart aches when I think about what Robin Williams must have felt that night in order to do what he did.  To be so loved by so many, and to be beyond hope. 

So please… write more articles about depression and Parkinson’s disease.  Tell everyone what they already know – chronic diseases suck.  But don’t tell me that I should try this therapy or that, that I should try this fantastic new fad diet, or that I should exercise more, or do less, or be happy for the days that I have that aren’t filled with pain and suffering. 

I am 41 years old and living with a chronic progressive degenerative disease.  I already know way more than you do, than 95% of health care providers (I’m being conservative) and 99% of pharmacists, and 1000% more than a reporter or blogger who thinks they know what was going through Robin’s head that night. 

They don’t.  They never will.  I don’t, either – but I have a few more minutes of insight into what his life might have been like, and I will mourn his loss for a long-time. 

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