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 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). 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 “
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 – 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 “” 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.
30. Watching loved ones suffer.
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More Chichen Itza (Mexico) pictures here.
Add your thought here.
More Chichen Itza (Mexico) pictures here.