Recently
a friend of mine who works with a mental health group encouraged me to speak
for said group’s clients and the community about their mission. I thought about
this for about 2 seconds, and then I agreed. In the future, I will be doing
this in order to get people to think about how Parkinson’s affects people with Parkinson's mental
health (I can't speak for other conditions since I don't have them).
Now
that I’m sitting with my thoughts, I’m trying to think about how I want to
express things. Normally, when we think of mental health, I immediately come to
the word depression, so obviously, there are concerns many Parkies feel with
issues of serotonin and dopamine levels.
And while
the biological reasoning for our problem is expressed in many places, there are
other things that Mr. PD creates:
1. Stress
– I’ll let Holmes and Rahe
handle this one for you, but I will say stress can do a number on anything and
everything. Thus, the key is to find your happy place quickly. Accept loss
forever. Create opportunity in tragedy. Easy enough, right? OK, yeah right, but
really, that is the end goal we should be looking for. The question is how to
get there. Interestingly enough with Holmes and Rahe, a jail term comes in fourth
(in terms of severity) behind divorce and separation. Obviously, people must
have access to Kevin Hart telling them how to “get hard.” Number one is death
of a loved one. Contracting an illness is #6, which is just ahead of marriage. Personally,
I would think that most men could lower the stress of marriage for themselves
and their future wives if they deferred decision making unless it really needs
their approval (in my case, I pushed for a botanical garden over a stately mansion,
but that was more in how I knew my wife loved flowers and how a foot or so of
snow when we were previewing it wasn’t a fair judge of an August wedding / my
wife deferred to me on the music choices, and I was OK with all other choices).
2. Fear
vs. Paranoia – we can have healthy fears of things, but they can also develop
into full-blown phobias. Keep in mind, the more it’s mixed with anxiety, the
more it becomes “irrational,” even when we know we’re being “suckered” by it.
And trust me; it takes a person who has been suckered and still knows he’s
being suckered to say this.
3. Anxiety
– fear, panic, worry, and unease. It’s a well-known fact Parkinson’s causes
none of these things (sorry, Opposites Day).
4. Neurotic
state – long term condition
of feeling down, guilty, anxious, shy, self-conscious, or envious.
5. Trauma
– a serious disturbance that we feel after something happened. For instance, a
little girl is bit by a dog, so she might relive it or feel paranoid around
dogs. What things might cause us to relive bad feelings and create disturbances
to our sense of being after PD does its number on us?
6. Hallucinations
– wide awake visions that aren’t there. These fall under psychotic disorders
since they are a break from reality. Dopamine fluctuations and medicines may cause these.
7. Surreal
dreams / Nightmares / REM sleep disorder – what’s a good night of sleep to a
Parkie? Either our meds keep us awake until the wee hours, we don’t wake up
refreshed, or we have weird dreams that we may act out. While the dreams would
be something to TIVO, the issue here is that we have them constantly, and they
create separate beds because we don’t have off switches; thus, we can be “physical.”
8. Co-morbid
diagnoses – there’s a whole lot of these “free toasters”
that we get for playing. Every time we add one, we get a new opportunity to
feel “blah.” Mine include dystonia, sleep apnea, and hyperhidrosis. I also had
dyskinesia on one med, and the doctors also found a nice case of Lyme disease, which won be a spinal tap.
9. Hopelessness
– There’s no cure so people collapse into sadness. This can become “absurdity”
when we wonder, “Why push the boulder up the hill if it’s only going to roll
back down each and every time?” Here, we might find ourselves blaming ourselves
/ others / God instead of coming to grips with how things are what they are.
There’s nobody to blame, and besides, there’s no check we’ll get to compensate
for our pain. At its worst, this leads to suicidal ideations. There is no best except getting past it.
10. While
we are coming to grips with loss, we go through the obvious sadness. We also go
through denial, anger, and guilt. How do we ever make peace with this and
accept our place in life? This is individual to everyone.
11. Lack
of independence – Everything from becoming the passenger to having a designated
butt wiper falls in this category. Sounds like fun, hmm?
12. Losing
people / driving people away before they leave – On one hand, we have those
people that can’t handle the burdens of our condition, so they leave. On the
other hand, other Parkies will go out of the way to get rid of people so that
they can be in control of burning the whole house to the ground. It’s not easy
to watch Parkinson’s, and it’s not easy to watch loved ones watch Parkinson’s.
Here, I like to say that nobody has a monopoly on who has it the worst. Stick together. Love is a good thing.
13. Parkinson’s
Emotional overload – In my case, computer voices on telephones / self-checkout
lines / intense traffic with volume, lights, and sounds / screeching noises /
intense agitations of others. This generally comes with a disclaimer, though it
also proceeds through discussions / needs / quiet places. Recently, I added
people swirling ice around in glass cups and any noise directly in my right ear. Some sounds are just too much. When they
hit, it makes me want to explode (in screams and vomiting), so it’s easier to
close myself off when I know that I can control myself.
14. Perceived
mood or tone – I’m smiling, but since I’m not smiling, you probably don’t think
I’m happy. Cue Louis Armstrong so that I can smile as big as possible so you
don’t think my voice and facial expressions dislike you. Oh, and let’s not
forget how bradykinesia, which causes this, also keeps us from blinking.
15. How
the heck do I explain all of this to young family members?
16. The
Be All, End All med didn’t work. Now, we need to get off the medication AND get
readjusted to the new one. There goes a month or so, while symptoms exacerbate.
In the meantime, we get to think about things like I did when I confronted past
/ future traumas of cognitive issues / dementia / passing out in the middle of
a conversation
17. False
diagnoses – PD can’t be confirmed until death. Sometimes, like with Robin
Williams, it’s Lewy Body Dementia (same ballpark, different team). Sometimes,
we were diagnosed as X, when it’s really PD. Since we need our brains, we’ll
just have to hope our diagnosis is enough and the meds work.
18. Avalanche
Day – the day we find out what we have in the form of “we just need to confirm
this, but we’re about 100% sure.”
19. The
day of confirmation – this could be another avalanche day, but the reality is
that we’ve crossed this bridge with the MRI, bloodwork, and physical testing.
20. Randall
“Tex” Cobb Blues – We’re revved up to fight the champ, and we come in tough,
but instead of winning, we take 15 rounds of a beating to lose the fight. This
is how it feels when we lose the fight and take the step back.
21. Apollo
13 Blues – Every time we lose the moon, we have to get ourselves set to get
back to solid ground. Along the way, we get PO-ed at the world, and we find venting
our maladies is the only option. I like to say how all those things that once
seemed so important are things we learn to lose and trade for other good things
/ life. Yeah, what’s really important and how do we adjust when the time comes
to confront what we can’t do?
22. The
JK Rowling Blues – When we write / express our thoughts, but nobody is out
there listening to us, so it feels like we’re just waiting for that big
opportunity where someone else says that, “X is worth reading / listening to.”
When that happens, we get to share our story. Until then, we’re just hoping to
make contact. In the meantime, it just feels like a lot of rejection letters.
23. The
Jenny McCarthy Blues – we have bad luck with traditional meds, so we blame some
BIG entity and assert conspiracy while backing hucksters with “natural”
remedies. There’s lots of people out there selling non-scientific stuff. This
is not to say that all natural remedies are bad, but if it sounds too good to be
true, and it’s not being backed by doctors and researchers… yeah. You can learn
more about vitamin
standards through the discussions at the FDA. Here is another good link
on that.
24. Frankl
/ Stockdale Reality Therapy - In many ways, you can put anyone talking about a
cure being out by Christmas as people promoting false hope. This is named for
two writers who didn’t give in to that magical thinking, so they focused
instead on being grounded for the long haul.
25. The
High Times Blues – when people with no understanding of CBD recommend medical
marijuana to someone who has Parkinson’s. Mind you, this has nothing to do with
medicinal properties, but instead is a backdoor opportunity to legalize marijuana
so that they can get stoned in a room with a big hemp leaf poster in it. This
comes with a standardized argument sheet from ProCon.org. THAT SAID, in my time
with Parkinson’s, I would be more apt to try this than before (as based on
problems my body has with other meds).
26. The
X-Files Blues – we come to see some great truth of Parkinson’s / its treatment,
and we can’t seem to shake what it means to the world. This isn’t all good or
bad, but it does create an extreme sense of focus on what staying the same path
will do to us and them in a negative kind of way. For me, this happened most
recently when I encountered issues with dopamine agonists, and I found a lot of
professional information about the horrific symptoms they MIGHT cause. This is
big and scary, and people do need to know. That said, how do we say it when A)
it isn’t written in stone and B) it can appear completely out of left field,
but C) it may not happen?
27. The
Internet Research in Parkinson’s Quasi Doctorate – when our life becomes so
well-versed from reading way too much Parkinson’s information despite never
having successfully completed an Anatomy and Physiology Class. Symptoms include
the ability to use phrases like “Unified Parkinson’s Disease Rating Scale” and
“MAO-B inhibitors” in conversation so many times that our knowledge becomes
contagious to others who talk with us. I'm about ready to finish my sophomore year.
28. Medshelf
expansion plans – The longer we go with our condition, the more medications
that we end up needing / switching out.
29. The
doctor becomes my doctor the longer we go in our condition.
