30 Parkinson's Mental Health Concerns / Developed Conditions

            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.

30.  Watching loved ones suffer.

Add your thought here.

More Chichen Itza (Mexico) pictures here.

13 Concepts I'm Learning about How to Deal with Things that Pile up and Threaten our Happiness (Parkinson's, Work, Personal, Medical Results)!!

As I've spoken about in many of my posts, since the last week of November, things have been accumulating on my "Pile It on List" of stress. It sometimes feels like we are breaking even as my wife and I will take a couple steps ahead, only to go back 1-3 steps with our health / life. Fortunately, we're great together, but sometimes life's stress takes it out of us. For me, I'm combatting that by operating on a written list of job tasks. It's really helping, and I win every time I color a line black or yellow.

This keeps me from being too stressed, though I'm not as orderly as I should be. That said, I'm working on it and keeping myself in that mode of us "Must do / will do." 

I recommend this for other Parkies and caregivers. Heck, I recommend this to everyone.

The point of life is to live it, but also to rewire ourselves for the what ifs. If we are taking care of someone else and not taking care of ourselves, both of us aren't in a good place since our energy tanks are low. As I said, the key is eliminate the faulty wiring and get ourselves ready for what's to come. We can do this many ways, but we need to prepare ourselves for the what ifs (relationships, job, family, cars breaking down, houses succumbing to the weather, sickness, disagreement, and other things that could happen day to day). These are the things everyone goes through,  but this person doesn't always know how to deal with them or feel like he or she can get out from underneath.

Here, if we're so inclined, we can think of Camus' take on Sisyphus, who was condemned to role a boulder up the hill only to have it go back every time. The central question was whether or not it was right to give in. Camus went with the idea of the absurdist hero, who stays true to his plight in the hope that someday he will be free.

As Albert Camus said, "I leave Sisyphus at the foot of the mountain! One always finds one's burden again. But Sisyphus teaches the higher fidelity that negates the gods and raises rocks. He too concludes that all is well. This universe henceforth without a master seems to him neither sterile nor futile. Each atom of that stone, each mineral flake of that night filled mountain, in itself forms a world. The struggle itself toward the heights is enough to fill a man's heart. One must imagine Sisyphus happy."

Let's look at this with a simple definition. Stress is what it sounds like: A pile of bricks pushing down on our chests like we're Giles Corey. Generally, we aren't like this historical figure screaming out for "more weight" as the Salem Witch Trials took his life, but some of us do dig our own pitfalls and compound our problems (I'm very experienced at this - but I'm learning to be better). Here, the best advice I can give is to learn from mistakes and not make them again. That said, we need not stay out of fray where things can go all or nothing, when they're much more likely to end poorly. Nevertheless, by giving it our all with the greatest help, simply by trying, at least we made an attempt. Whether it wins big or crashes to earth, at least we can celebrate ourselves for giving our all. 

Let's just go into it with enough advice and assistance. In doing this, by thinking about our time in the game, we can reflect on how we've at least tried when we think of all the people who won't, can't, and don't want to risk failure (I'm working on accepting life success in this way, too). What good is contemplating a game we're never going to play?

How can you give your best effort until you stepped in the ring?

Another point to this concept of keeping ourselves out of trouble is that we don't have to make every decision on the spot. Sometimes, we need to think about it first (I'm also an expert at not doing this enough) and phone a friend. By cutting out the need to do, we can meditate, pray, seek advice, and / or search for evidence. That's a good thing.

Some people may not be aware that there are tests to monitor the stress in people's lives. Perhaps, this is because they have never heard of stress reviews by name, but my belief is that we've all done something like the Holmes and Rahe Stress Scale in order to find out what's ailing us. Sometimes, this rewiring we're going it about knowing the rules of the game. Find a mentor, remove what doesn't need to be, find a support system, and project goodness out to the world. It may only give you a couple points back, but as you go, the things it teaches will become natural and instinctive.

Which brings us back to MWAH!

Nevertheless, I've been trying to work my way through all of these stress building experiences in a way that doesn't leave me feeling existential. As I said, I'm motivated to do things when they are written out on a list. Here, I feel like I'm working hard when I cross things off on my color coded to do list (pictured above). However, other times... not so much. Long live the Parkinson's exhaustion tendency that gets in the way... NOT!

In my mind, I know what I have to do (stay loose / stay positive), so I reflect on the simple things that make me happy OR things that I am thankful for.

We'll start with advice (#1) from my cousin David....

1) Never give up on yourself, no matter what happens.

2) Some things are priceless.

3) Whether it's writing, acting, or life, push it to the maximum. 

4) Never stop talking when you have a connection. You may not be an X, but perhaps, you were meant to be a Y.

5) Encourage others to the maximum

Moving on from that to the Parkinson's things that affect me. 

#2) My left side, which had been wracked from the car accident 2 weeks ago, is slowly getting better. As I've said before, I was able to get up and out of the car and move around, but it's really painful to lean against it now that the adrenaline and fear from that moment have vanished, so I need to keep pushing myself for walks of longer differences. Yosemite in about a week... I can't weight to see the waterfalls, bears, and rams!

3) I'm currently in the midst of my sleep apnea machine use, which is a tough process figuring out what works and doesn't. Whether a face mask or how to lay around to not feel hurt, I am conforming to the nature of going from have to do to want to do. 

For the most part, I can sleep well with it, when I can sleep (the past few nights are around 3-5 hours with a nap usually thrown in. Given about a month, I will be able to figure out how well that I'm doing with this new medical process. At that point, I will be going to MY pulmonary specialist for a check over. 

On that note, it seems weird to have a personal neurologist and a pulmonary specialist that I can all my own. At my regular doctor's office, I just get who is available at the time. However, with a regular doctor, he or she knows me, and it feels more personal.

4)That being said, the medicine cocktail I was on up until earlier today (my doc has me taking Benztropine / Cogentin to go with the Azilect / Rasagaline and Ropinerole / Requip),  has caused me to monitor a lot of what went on with it. For those reasons, I am now abandoning it on the basis that there are too many problems with it, so I will be on Sinemet.  That wasn't ideal, but seeing a spotty memory in my head... yeah. That's too much. 

From a professional standpoint, my doctor had wanted to hold that off as long as possible, but with this one not working, too (that's the 3rd medicine I was affected by), everything seems to point toward bumping up my need for Sinemet. 

5) As I said earlier, both my wife and I are monitoring the side effects of my medicine, as well as how they operate together. Looking up the side effects of what I'm taking is a learning process and a scary experience. While I can, I'm going to continue to learn everything and do things to enjoy life. Nevertheless, there is a lot of medical-ese in some of the academic things we need to accomplish, so every day is an adventure.

This list of side effects is from e-Medicine Health. There are only the ones on the list that apply to me. You can see more information about what might apply to you HERE.

On the list from them, I list the ones I am seeing and experiencing.

• confusion and hallucinations
• constipation
• dry mouth that interferes with speech, swallowing, appetite, or eating;
• blurred vision
• twitching or uncontrollable movements of your eye lids
• drowsiness, feeling nervous or excited;
• nausea, upset stomach

6) The same can be said about my sleep apnea machine's side effects / problems with it. While not everyone feels inclined to wear a CPAP mask at bedtime; however, it's a working solution that can positively affect people with sleep apnea. Studies show is prevalent in people with PD (though some people develop snoring / breathing issues based on weight). Thus, these are the 3 biggest problems:

• The mask is considered a nuisance (uncomfortable or creating claustrophobic feelings). 
• Additionally, people may get a runny nose or nasal infections. 
• Uncomfortable leaks, which keep people from getting enough air.

I would also add that if you're a twist and turner like myself, well, you will probably have to find the right way to sleep with the mask on, especially if you and your significant other are going to co-habitate in a queen or king sized bed. Considering that I'm now physically trying to touch / hit things in my sleep, I feel that I can do it under sleeping conditions in my own room without hurting my wife (when I have nothing but love for her).

7) In the past, I have spoken at length about how I generally like going into a dream world, but recently, my dreams are becoming more prone to wild arm movements. One example of this happened the other night, when I woke up the other night to feel trapped in the bedroom. I couldn't find the door or the light switch, and a feeling of anxiety came over me. Was I at the mercy of some ghost or demon that was going to suck the life out of me in a room where nobody would rescue me? That might sound funny to look at it that way, but that's not my intent. Instead, I state it to discuss a new level of PD effects with my life. 

 8) I have also spoken at length about my love of music, and how I feel that it can truly help us relax, let the dogs out, or go crazy to. 

I hadn't heard this next song in ages, but it came on the other day, and I just felt a sense of some extreme force for change. It's the same thing that exists in Neil Young's "Rockin in the Free World," Hendrix's "Voodoo Child," the Doors' "The End," MC5's "Kick out the Jams," Allman Brothers' "Whipping Post," and Joy Division's cover of the Velvet Underground's "Sister Ray." Sometimes, we just need raw, live energy like The Chambers' Brothers' "Time Has Come Today," which expresses how something needs to be said and done to make things better, even if it's just us facing down the PD demons.

9) Spending more time in my wife's garden, both to check out the flowers and to drain the ponds. Siesta Zone more often is a good thing. With that said, it's beginning to look a lot like spring!

9A) Since I'm giving mad love to my wife's creative side, here are some of her stained glass creations.

10) The new Avengers movie was great, and it's decent popcorn entertainment on the big screen. I recommend checking it out. Go to a matinee if necessary, it's worth it. If you need to, find a teenager to watch it with. That's what I did when I went with my one tutoring kid and his father. I'm sure said person will refer to the movie as exceptionally  "cool" since it works really well on that mindset. And yes, I will admit to feeling 14 in my appreciation of the movie.

11) Last Friday, Heather and I took my mom out to eat at Appleby's since my dad was away hunting and fishing. It was nice to have a bonding experience like that where we can get together and discuss life and love and the pursuit of happiness. The food was pretty good, too. 

Normally, we don't do the appetizers thing,  but sometimes, you just have to treat yourself to soft pretzels and all of their sauces. Our best tasting one was in a restaurant up in New Hampshire, where everything was top of the charts. Primanti Brothers do a good one as well, but their hot sauce is actually nuclear hot. Use sparingly. I'm living proof (beefcake, beefcake). 

If you're not familiar with Primanti Brothers, it's probably because they are a western Pennsylvania / eastern Ohio thing. Their claim to fame is sandwiches with fries and cole slaw on them. Cole slaw is too healthy for me, but fries on burgers... Yep, my wife used to go to a place in Cleveland that did that. And yes, we're hooked.

12) The best way to keep loose and lose the rigidity is to get moving. For me, this is hiking. The other day, I had to drive past a short cliff-side walk (about a mile back and forth, tops), and I was debating whether to do it or not, but as my mind tried to pull me away with its gibberish, I managed to say, "The heck with it." 

When I know I'm fighting capitulating to the concept of giving in, I need to do what I can to win since I know the only other option is to lose opportunities and time if I choose to be a huffa-lump on the couch. In this mindset, it's never easy, but then again, it never gets as easy as it does in the beginning days of having it. Thus, we must push through. When we do that, whether it's a walk back and forth on a city block or Jimmy Choi doing Ninja Warrior, we're giving it our best to keep ourselves moving forward. 

And remember, not everyone's idea of the best is the same. Thus, we need to all start back in the field somewhere. I think about this now as I feel the dystonia and cramping in my right foot, too. If I sit around and do nothing now, I will lose opportunities I can't make up later.

Thus, the bucket list.

This is something I would tell anyone who needs to / wants to push back at the rigidity. Yes, we all have to come to peace with this state on our own, so I won't mandate what others do, but I would really like to see more Parkies out in force, showing their smiles as they show that they are good lovable people who don't deserve to be thrown off of healthcare or treated like second class people. Just remember the historical evidence of Lieutenant Dan making peace with himself. 

Moving back to the hike to Chickee's Rock overlook on the Schuylkill River, I got to the top of the trail. Pausing to shoot pictures with my camera, I saw the May apples were coming out in force. When I looked closer, I saw that the little pea sized buds are forming. 

It may not have been baby owls, a flock of night herons, a huge elk, or a pair of baby black bears going down the pole. Instead, it represented something beautiful that my wife pointed out to me on a trip some years ago. 

Over the years, she's taught me a lot, and she's unwavering in her support. I hope I can continue to pay her back for all that she does for me, little by little.

On that note, I must say that no matter what we are up against, we always get through it. I couldn't think of a person who I'd rather have in my life as both my loving wife and the CEO of (what's left of) my brain!