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.

Not Taking a Walk on the "Wild Side" Anymore with 8/11/2018 update

In 2002, author Neil Strauss got the members of Motley Crue together to discuss sex, drugs, violence, rebellion, angst, heavy drinking, and music. What came out was The Dirt: Confessions of the World’s Most Notorious Rock Band. If anything, they were holding back as to how depraved that they were. Nevertheless, that first album was a classic. As for the book, if you’re into that sort of thing, it was really good other than anything connected to Tommy Lee and Pamela Anderson. His poetry about her was especially bad.

In the Crue’s later days, they reached a level of fame that couldn’t compete with their album length output. One of those songs that did have a level of success was “Wild Side,” and it sums up a lot of problems that pretty much go back to a lot of terrible life choices (Motley’s and the world that they viewed many of their fans as living in). However, they are entertaining to read about until you realize these situations actually happened (it’s like Led Zeppelin’s Hammer of the Gods turned up to 11).

As for “Wild Side,” I find that to be an apt name for a dopamine agonoist that I was taking until today. Since the medication may work for you, I choose not to keep people away from it, who might otherwise benefit from it. That said, I do believe all medications (pharmaceutical or natural) are a value choice. You need to be informed about anything from cough drops to morphine. Really.

Wild Side has a lot of warnings. These include a lot of symptoms such as the super extreme compulsion behaviors like gambling and sex addiction. I’ll list a few of the other ones here: Confusion, lightheadedness when someone stands up too quickly, nausea, hallucinations, sleepiness, weird body movements, worsening of parkinsonism, abdominal pain, bloating, blood in the urine, blurred vision, chest pain, chills, nervousness, blood pressure changes, cognitive issues, depression, rapid weight gain, tightness in chest, troubled breathing, loss of bladder control, trouble with swallowing, sweating, nightmares, and unusual urges. And yes, there’s belching and gas, too.

My deal breaker issue with my medication was how it put me to sleep, mid-sentence, last night. One second, I was going over SAT vocabulary with a girl. The next thing I know, I was realizing that I was out for the count. I’m not sure how long, but long enough to know it, but short enough that I woke up on my own.

In that instant, Wild Side scared the tar out of me. Granted, I had some things on that side effects list, but other than feelings of “side movement” in an otherwise empty house, it was nothing I couldn’t deal with because I knew it was my mind playing tricks on me (though having weird dreams like being back in the Holocaust were starting to get all too weird).

However, the nausea and lightheadedness sucked. So does my nonsensical sleeping routine, so now that the worst has happened (added to a list of past and present issues from PD and meds that include cognitive issues, aspiration pneumonia, giving up independence + livelihood, REM sleep behavior disorder, needing a caretaker for bodily functions, and anything related to personal relationships), I'm done with it. 

So today, I kicked the (chosen derogatory term here) to the curb. I’m going to take a break from medications other than Azilect for a while. I haven’t had much luck with Parkinson’s meds other than that one, so I’m going to need to figure out potential job options (as PD gets worse, which I fear it is) and future disability status with the Office of Vocational Rehab (hopefully in the next week or so) and my doctor (I go back to  him in early September).

I’m glad Wild Side is no more. I just want it to take its stuff out of my body quickly, or I’m going to start charging rent.

8/11 post note - I didn't have any issues with withdrawal, though my experience is my own.

PLEASE PLEASE PLEASE do not use me as a doctor when I am only a patient describing experiences. For medicinal choices and effects, see a certified physician.

Sleep Anxiety: Yet Another Hidden Symptom

My wife and I are driving down a winding road in my new to me used car. It has replaced my beloved older car, which “died” saving me from an accident. Normally, the ride is a pretty smooth one, but for some reason, I am not able to hug the curves carefully enough, and my car goes careening off the road into a lake.

As it begins to sink, we hurry to keep it afloat. There is no way that I can lose 2 cars in about 4 months, so I must do everything in my power to keep it from sinking to the bottom of the lake. As I do this, I keep pinching myself to see if this situation is real or a dream. I’m pretty sure it isn’t actually happening, but it feels real. Nevertheless, for what I can’t feel in the lack of sensation my pinch creates, the dream is not ending. The car continues to sink, and I can feel the weight of this moment coming after me as it goes on and on.

As time goes on, there is a palpable feeling that my car is definitely sinking, and I'm truly in a world of not-so-good-ed-ness. This is getting scarier and scarier as I try to save my car and pinch myself to see if the madness is real.

Eventually, the dream does end, and I am safe in my bed, but all too completely aware that this is another one of my Parkinson’s dreams playing tricks with me.

If the commercial placement of hallucinations in the life of a Parkinson’s patient is any indication, then people are becoming aware of this side effect in the lives of people with said neurological condition. While it’s not a stretch to think of people with neurological conditions experiencing these issues of things happening that aren’t happening (for instance, ghostlike movement off to a person with PD's sides in an otherwise empty house OR paranoia regarding what family members are “doing” to them), society often blanks out on the way dreams affect Parkinson’s since they tend to be isolated from the slumbering Parkinsonian.

All things considered, why would they know?

If I were to go back to college now, I would love to work on a huge project with Parkinson’s and REM Sleep Behavior Disorder. It would be great to do an independent study where I could look into issues of hallucinations, anxiety, dreams, and visions regarding neurological conditions.

I know what you’re thinking: This dude needs serious help.

But it’s true. I love trying to sift through the dream symbolism and surreal nature of my dreams to decipher what they mean. These include winning big at a casino (compulsive gambling is a rare symptom of Ropinerole and other meds like it), being afraid of my friend driving wildly, ending up at Sandals for a romantic tryst as part of a comedy movie, going to a concert with Pete Yorn rolling around on the ground singing songs that sound more like Sun Kil Moon than him (after seeing Blink 182 and the Offspring collaborate as skateboarders go wild on a halfpipe), waking up and feeling an earthquake shake through my room, flying above a slot canyon on my command, searching for a lighthouse in Britain (which I never get to), and fighting people to the death with makeshift spears, which culminates with me actually punching at my antagonists.

What does all of this mean?

Well, for one, if it involves out of the dream punching, kicking, and scratching, then it means REM Sleep Behavior Disorder is present. This is one of the first signs of having Parkinson’s. One longitudinal study with 29 patients found that almost 40% of those surveyed (a very small amount, mind you) had Parkinson’s diagnoses in a little over a decade. That’s definitely cause for more research.

For two, it means that when we dream, we can feel the anxiety of our lives pushed into dreams, though this isn’t always true. Sometimes, it’s just smoking cessation meds, blood pressure meds, or Parkinson’s meds creating a weird situation in the brain. Insomnia or sleep deprivation can also cause nightmares, but in other cases, anxiety can manifest itself into our unconscious world of sleep problems.

For three, it means that demons are trying to possess said person. In this case, get the patient to a nunnery or monastery, as appropriate! Actually, you’d do better to call Father Karras. He or the Warrens are your only hope.

But since this is reality for a Parkinson’s patient (gotta love our dopamine level fluctuations), it could be a little bit of 1+2. Many of us tend to deal with depression, angst, feelings of meaninglessness, loneliness, loss of independence, communication problems, suicidal ideations, worry, aggression, nihilism, absurdity, crisis of faith, and rejection. Isn’t it obvious that we would feel anxious in both sleep and real life?

Add to this a bizarre cocktail of medicines that could make Timothy Leary stare wide-eyed, and you have a recipe for problems.

This is not always true, but the Mayo Clinic feels that when nightmares keep people from sleeping or wanting to go to sleep because of their intensity and frequency, then they should see a doctor, especially if this intrudes on their daily life. This article at Psychology Today lists a lot of helpful hints on controlling dream problems. These include staying on a schedule, relaxing, and things to avoid (video games and caffeine, for two).

For me, I’m not scared to dream - even when they get surreal or wild. I don’t hurt myself, and my wife is now a bedroom away, so I can’t hurt her anymore. Here, I should clearly note that I would never knowingly hurt my wife, but because of pillow stripping / throwing and scratches in the past, I had to accept this situation. I always say that it’s amazing what we can accept to stay alive, but this punishment was a bummer. Sometimes, a sleeping buddy just wants to touch toes to toes out of a feeling of, “Yeah, I love this person next to me.” It’s not meant to be some bizarre fetish either. It’s just, “I’m connected to you.” Things like that and holding hands, being in the same room, casual “I love you’s,” and hugs / kisses when leaving and coming home are the true intimacies.

 Nevertheless, those dreams… what they can’t take from us or prevent us from doing.

As I’ve written about, recently, I had a CPAP machine prescribed to me for treating sleep apnea. Nevertheless, I would tear it off in a half hour to three hours each night I wore it. I only remember one night that I took it off. Everything else… a mystery.

So far, in my Parkinson’s journey, this is my only treatment refused. There’s no point taking more anxiety / Parkinson’s meds when I’m taking 3 already. I know I’m a health helper person, but sometimes, we have to make a value choice. Do I want another med and its potential side effects so I can try to use the CPAP machine? Will I be OK without the CPAP machine if I choose not to use it?

I guess I'll find out soon.

In the meantime, bring on those dreams.

When the Fake Ghosts Become Real: Hallucinations and Other Scary Side Effects of a Medicated Condition

Unlike the fake demons, ghosts, ghouls, and other people celebrating in Salem, Massachusetts, every Halloween, there are some really scary realities that we people with conditions like Parkinson's experience. Often, the medications we take while being treated for these conditions, can create risks that are downright frightening. These create the kind of situations that make people question the nature of their treatment and hope for being better.

That's not good.

Thus, this is a story about choosing the right meds with your doctor and understanding that not all medicines work for all people, so patience is everything.

FIRST AND FOREMOST, being medicated is trial and terror, and it's not your doctor's fault if the pill needs to be a greater dose or yanked due to side effects (getting the right dose is called titration). Bodies are different, so what works for one doesn't work for others (and vice versa). Thus, my effects listed below might not be yours.

Additionally, your pills could take a few weeks or a month to show effects other than things like feeling nauseous. This lengthy healing leads people to frustration, especially when they look at the price tags on some of them (a month of Rasagiline, AKA generic Azilect, is over $500 for 30 pills if the buyer had no insurance).

We can attribute this frustration with this process to a few factors:

NUMERO UNO - we are just plain scared of this dark place we entered into. Things that exist there are designed to hurt us (or so we believe).

Understandable.

Next, going back to the beginning of the prescription process, one of the most important concerns that people have when it comes to taking medicine is simply put, "Will it make me better?"

The next question is either, "How much does it cost?" or "How fast will it work?"

Whichever way, they're the follow up questions.

Our doctors explain this. Our pharmacists double check what was sent against additional effects of taking A with B or C, because, you know, we don't want a third arm growing out of our backs and they don't want a lawsuit on their hands. They also ask to speak to you, too.

Then there's fear of "chemicals" in our bodies, desire for natural medicines, or desire for medical solutions that are kept from us by law. We want to know about these, too.

Additionally, one of the most common thoughts of people of my age and older, who saw the advent of medical commercials barraging us on our television sets, is how people were now able to go in and say, "Take your Warfarin and give me Eloquis or Xarelto!" Amazingly, just by seeing a commercial, we are all planning to be as happy as these people on television who took the Pepsi Challenge and just said no to the wrong choice.

As with the way medications are sold on television, the beginning of the commercial talks about how wonderful you will look while swimming, performing in front of crowds, proposing, or enjoying family / friends. After that, at about the half way point, the announcer changes his or her tone to "faster than an auctioneer" and reveals all of the side effects you could get. These cover everything from rashes to death. We are warned not to operate heavy machinery, and that's a good place to not be. We don't want to be messing people up with our choices to drive farm equipment in crowded places, when we pass out.

To continue this discussion, I give you the Otezla people, who stand as my arch nemesis in the world (goll dang you and your usurping of Katrina and the Waves' "Walking on Sunshine!).

Now in reality, I have no issue with Otezla; it's simply just an easy example to show since we all watch the commercials on television, and we get what's going on in them. This company manufactures a drug to help us, and it wants us to consider taking it. Product recognition isn't necessarily a bad thing, but alas, some of the effects that some of the people taking it might experience are. It's all about how "sensitive" our bodies are to the medication.

This goes for all meds - not just that one.

Nevertheless, in cases where people taking medicines / procedures could become a danger to themselves and others, we often don't know what to do or to look for when it comes to monitoring someone's behavior. Do we hide all of the dangerous instruments of death (to include the butter knives) to protect us (and them) from themselves?

For instance, I was talking to someone I knew, and he told me the story of one of his fishing club associates who had issues after having anesthesia (BTW - this can hit Parkies and people with Alzheimer's hard, too). As I am not a doctor, I can't say what the condition is from the description I was provided, but from how the symptoms were described, the person in question seemed to be more and more agitated than he used to be. In fact, now he seemed to be ready to instigate trouble over things that most people would never get down to fighting over.

"Looking up issues on the Internet" (WARNING - not always a good thing), I saw something that would seem like a good starting place: Post-operative Cognitive and Delirium Dysfunction. 

Science Direct states: Delirium and cognitive dysfunction are common manifestations of acute brain dysfunction, occurring in up to 70% of post-surgical patients. Developing postoperative delirium and postoperative cognitive dysfunction have long-term consequences, such as higher morbidity and mortality and increased hospital stay, and it increases the risk of dependency and institutionalisation. Despite the relevance of these cognitive disorders, the specific aetiology is still unknown, and there are many factors that have been associated with its development. Between modifiable factors associated with the development of Postoperative Delirium is the exposure to analgesics and hypnotics. The multicomponent interventions for prevention and treatment have been shown to reduce the incidence and severity of episodes.

This presents a slew of issues. If we are possibly a danger or in danger due to our own medicines, then how do we confront the consequences of this when the time comes to choose the value of a pill over the value of freedom from side effects? This could range from driving to working to owning weapons (I grew up in a hunting home all of my life, and nothing problematic ever happened with the weapons my dad owned, so I'm not touching the gun control / ownership argument because it only matters here to the choice of the responsible owner).

NEVERTHELESS, I state that how we choose to give up independence is a question that a lot of us will confront some day. As I am an American, I look at how driving, working, and gun ownership define so much of our country's inherent attitude. That's not a bad thing or a good thing; it just is. Thus, when we come face to face with something that could create a danger to our interests / hobbies, can we accept that we can't perform them anymore? Can we afford to scale treatment back?

I can't answer that either, but I do think about it with work and driving (there are no guns in my house, so that's not an issue).

Another perfect example of this is a woman I know who doesn't drive at night since she only has one good eye. Instead, her husband takes her places. Working through these issues helps makes sense of that type of thing. I never hear her complain about it. In fact, it makes her and her husband closer since there seems to be a valuable sense of protection and love in that act. Surely, there will be women who say they don't need a man, and while that shows a streak of independence, the reality with PD is that we will eventually need people to button our buttons, clip our fingernails, or help us around (to include wiping our butts!). For this, we need to understand that the new normal might be different, but it can be just as fulfilling / personal in different ways (though I'm not sure butt wiping counts as fulfilling).

I face the contemplation of this now in my life as my students who owe me work come in to hand it off. It's important to say that I am facing the future of liking a lot of things about teaching, but also in facing a future where I wonder when the serious freezing and pausing is going to come and make lecturing / grading impossible.

It's a difficult prospect to figure out, but yeah... that's where I am since all of my optimism is a reaction to the scary future (loss of independence, family tears, loss of mental functioning, inability to dress myself, freezing, deep brain stimulation, financial woes, etc.).

This leads us to a place in the past (that is no more) where the medicine I was taking affected me with all of its side effects at once. The name of this medicine was Benztropine. It is one of many different medications with a chance for extreme effects (others are HERE - to include Prozac (Fluoxetine)). Many times, they don't happen. Sometimes they do.

Going down the chart, I list you a few of these. You can see the rest at the link above.

1. being forgetful (this is the worst for me since it reminds me of my Gram's Alzheimer's and my loss of identity)

In this 1, I literally found myself fishing for words. I would come back with the wrong words, and I knew I was wrong, but it was the word that came out of my mouth all the same. Being in a place like this, where I am trying to find the answers is a bad place to be. I had the same issue last fall with Artane. Amantadine was just a freaky rash that came up after a couple months, but being off meds for PD left me BLAAAAAAAAAHHHHH!! last autumn. This time, in just a short week (tops), I was forgetting things I saw 2 seconds beforehand. I literally felt "far less than intelligent" knowing that my answers were dysfunctional beyond just word fishing.

It was like the bridge out sign was up, and I needed to find a different way around to where I was going. The only problem is that the alternative routes meant driving all over the place to find the way back to the place I was going. My "map of the world" had become faulty.

1. constipation
2. dizziness
3. dry mouth 

This is really bad - I thought it might be due to the sleep apnea machine I've been using or my seasonal allergies, but yeah... my mouth was definitely in need of some serious flavored stuff to take the nasty away

Also, I should note that I take off my sleeping machine mask in the middle of my sleep! (usually at about the 1-2.5 hour point)

• headache

1. irritability
2. lack of appetite
3. muscle cramps

This is really bad - My right foot seems to be getting ready to go dystonia style like my left foot, it would seem with really rough, movement stopping pains that I need to stretch out to make them vanish. 

1. seeing things that are not there

I had also been seeing "ghosts" in the form of movement out of the corner of my eyes. I know they're hallucinations, but it still makes me jump when it happens and I can rationalize it back to unreal. 

I also had felt "trapped in my room," which happened one night when I couldn't find the doorknob or the light switch to exit the bedroom to do a midnight bathroom visit. Unlike MISTAKEN SYMPTOMS (an old post I wrote), this wasn't a "we'll laugh about it later" kind of thing. Instead, it was Marley's Ghost taking me to see the future of my PD life.

1. thirst
2. tiredness
3. trouble concentrating
4. trouble with sleeping
5. blurred vision
6. lightheadedness
7. I also have twitching eyes, which didn't appear to be on the Mayo Clinic's list

For me, the only answer was to quit it cold turkey, which I did. I never looked back.

+++

In hindsight, this worked. I didn't replace the medicine since my doctor felt we could put that off for some time (until we go with "big guns" medication, but now, a few weeks later, I'm still in fear of what could be with some of these PD things that are coming. However, in the weeks it's been since I started this story and posted it... I feel a lot better about my chances at the poker table of Parkinson's.

Nevertheless, for all of the crap that's out there with our shared condition, I choose to be optimistic because pessimism is a lousy choice. Sure, we all need to cry sometimes, but when we're feeling capable, we need to work (however slowly) to acceptance of what is.

Thus, my goal is to go swimming with Lieutenant Dan as much as possible, because, like you, I'm fighting a tough fight (no matter what stage we are at). You might call the condition of dealing with it "purring like a cat on a throw pillow." That's fine, and I do like to feel that way, but the ultimate choice is listening to Forrest and accepting the hand that's sitting in front of me.

So, Gary Sinise, I'm ready to jump off the boat, too, and make my peace.

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!