Parkinson's Update

It's been over a year and a half since I wrote in this blog about having been diagnosed with Parkinson's disease.  I had said, at the time, that I didn't intend to turn this blog into a "Parkinson's blog" and, true to my word, I haven't dwelt upon the subject (as the virtual hecklers in the audience point out that I haven't dwelt upon or even written about very many subjects at all!  Well, this post may over-compensate for my reduced verbiage of late.  All I can say is, you asked for it!)

Well, more than a year and a half has gone by, so I thought perhaps my regular readers (both of them!) might like an update, so here it is.

Overall, my condition has stabilized somewhat, although there has been some notable deterioration.  While I never kept track of my typing speed in words per minute, I'm certain that it has slowed somewhat.  I unintentionally type a lot more double letters than I used to and my fingers just don't move as quickly and gracefully over the keyboard as they once did.  For a computer programmer who has been touch typing throughout his career and even before then (I did take a typing class in high school), this has been noticeable.

Related to the typing problem, my use of computer mice has developed an irritating problem as well.  I'm constantly clicking my right mouse button unintentionally.  I tend to rest my right ring finger on the right mouse button as I move my cursor around the screen, but that finger has developed a tendency to twitch, or to rest on that right mouse button just a bit too heavily.  Most computer users will understand that right-clicking one's mouse is often used for alternate functions such as popping up menus or cancelling commands, which means that I often end up doing things that I absolutely did not intend to do.  Thank heavens for the undo function!

While I've always had a slight tendency to stutter or stammer somewhat, this seems to be getting worse as well.  Speech impediment is another common Parkinson's affliction.  In my case, I think it's a combination of a reduction in the ability to coordinate my mouth and tongue movements, as well as an increased tendency to grope for words that used to be at the tip of my tongue.  Sadly, Parkinson's can affect cognitive functions as well.  I'm hoping that isn't the case with me (hey, we all have trouble thinking of words from time to time, especially as we get older).  Interestingly, I've had very little trouble formulating this blog post which suggests that it may be more my mental speed that's been affected rather than my mental capacity.  Sitting here, typing, I have more time to compose my thoughts and form them into sentences than I would if I were speaking off the cuff.

Perhaps most annoyingly, that embarrassing symptom of uncontrolled drooling that I'd mentioned in my original post about Parkinson's has worsened.  This is a common Parkinson's affectation, medically referred to as sialorrhea.  See, everyone's mouth constantly generates a certain amount of saliva, even when we're not eating, and most of us just swallow it automatically without even being consciously aware of doing so (yes, that includes you.  Have I grossed you out?)  Parkinson's can interfere with automatic reflexes like this so, in my case, if I don't make a conscious effort to swallow my saliva every so often (sounds even more gross, doesn't it?) it runs out of the right side of my mouth.  The problem worsens when I'm focused on a task (like doing my job at work) and not paying attention to what's happening in my mouth.  This can be embarrassing even if no-one actually sees it happen, because the saliva tends to land on my shirt and leave faint rivulets and trails as it dries.  I've actually started preferring to wear shirts with fabrics and patterns that don't show these as clearly as others.  I must say, the medical establishment hasn't helped by giving the condition an embarrassing sounding name.  Quick, what other medical conditions can  you think of that end with "...orrhea"?  I can think of two, right off the top of my head, and neither is usually mentioned in polite company.

My neurologist has suggested a few remedies for this.  First she prescribed a medication called Cuvposa.  This is a liquid, originally intended for people afflicted with cerebral palsy, which reduces or eliminates drooling by inhibiting the production of saliva.  Trouble is, it apparently inhibits the production of all sorts of bodily fluids.  Just a few of the long list of potential side effects include constipation, bodily heating (because the sweat glands stop working), dry mouth, nasal congestion, headache, vomiting and shallow, rapid breathing.  In short, Cuvposa dehydrates the person taking it!  I quickly decided that the side effects were likely to be worse than the drooling, and rejected that option without even trying it.  I filled the prescription, but the bottle sits, untouched, in the medicine cabinet.  

Because I did fill the prescription, I also learned that a 473 ml bottle of the stuff costs $700!  No, you did not misread that.  Seven hundred! That's an expensive way to dehydrate myself.  Fortunately, the cost was covered by my employer's medical plan, but it does have a yearly limit and, at $700 a bottle, it wouldn't take me long to get there.  This smacks of a drug company that's recouping the cost of making a medication that has a low sales volume on the backs of those few people who require it and therefore have no choice.  Jeers to Merz (makers of Cuvposa).

The second thing that my neurologist recommended was a nasal spray called Ipravent.  This is intended to stop a runny nose but I guess my neurologist reasoned that if it reduces nasal mucous, it might also reduce saliva as well.  I was directed to spray it under my tongue rather than into my nostrils.  I agreed to try that and I can report that I've not had any undesirable side effects, nor any desirable ones, such as reduced drooling.  It simply doesn't seem to work.

The third option suggested by my neurologist was Botox injections into or near the glands that produce saliva.  I guess the idea is that Botox can reduce the flow of saliva by puffing up the saliva ducts in the same way that it reduces wrinkles by puffing up the skin.  I read up on it.  It has been shown to be effective and seems a low-risk option which can always be reversed by simply stopping the Botox injections (which need to be repeated every three to six months).  I'm considering trying that.

So, how have I been managing my Parkinson's, you may wonder?  Well, I regularly take levocarb, which is the go-to medication for Parkinson's.  That helps to mask the symptoms by giving my brain an infusion of the dopamine that it seems incapable of creating in sufficient quantities on its own.

More interestingly, I've been referred to an organization called CARESPACE Health & Wellness where I've enrolled in a special exercise program for Parkinson's sufferers called PD SAFEx.

CARESPACE is a privately run organization which offers programs to improve both health and wellness  with the help of physiotherapists, kinesiologists, chiropractors, dieticians and psychologists, to name but a few.  It's not exclusively for Parkinson's sufferers but it is run by Dr. Quincy Almeida, who has specialized in the study and treatment of Parkinson's for several years, and who developed the PD SAFEx program.

PD SAFEx is a twelve week program designed to slow the progression of Parkinson's disease through the use of physical exercises aimed at retraining the brain to correctly interpret the sometimes distorted feedback that it receives from the body's proprioceptors.

Proprioceptors are sensory receptors that provide the brain with feedback about what the body is doing, including where everything is positioned in space, what muscles are in use, what parts of the body are moving and how they are moving.  Dr. Quincy's theory is that the central problem with Parkinson's is the brain's inability to correctly interpret the information that it's getting from the proprioceptors.  

This has caused Dr. Quincy to see Parkinson's in a different light from that of the traditional medical establishment.  For example, he doesn't see a trembling hand, one of the most common indicators of Parkinson's disease, as a "symptom" but, rather, a coping mechanism that the brain is using to counter a lack of feedback.  With Parkinson's, the brain is unable to determine the hand's position in space, so it sends out signals that cause the hand to tremble (sort of the brain's way of asking the hand "where are you?")  This trembling strengthens the feedback signals sent by the proprioceptors until the brain says "Ah!  There you are!"

The exercises in the PD SAFEx program are designed to teach the brain what feedback to expect in response to specific movements and thus improve bodily control as well as reducing the need for over-compensation strategy such as tremors.

So, for the TL;DR version (which, admittedly, I should perhaps have given at the beginning of this post), I've accepted Parkinson's as a permanent part of my life.  I'm learning to cope with the symptoms as best I can, while working to control or reduce them wherever possible.  I do feel that fate has led me to the right professionals who are helping me to succeed in this.

I'll close with a special shout-out to Dr. Quincy Almeida who, besides being extremely knowledgeable about Parkinson's disease and empathetic to those living with it, seems to be just a nice guy in general.

ChatGPT

I've been hearing and reading a lot lately about a new artificial intelligence (A.I.) algorithm called "ChatGPT".  ChatGPT is a "chat bot"; a computer program with which it is possible to interact using plain English sentences, just as if you were talking to a person.  You can ask it questions and it will try to answer you, partially by drawing upon as much relevant information as it can glean from the internet.  It also has a "machine learning" algorithm, meaning that it can remember information gained and conversations from earlier interactions and use that information to make its responses more relevant.

Some people have sounded the alarm about A.I. getting too clever for its (or our) own good.  Might it spread racist, homophobic or hate propaganda that it finds online?  Can it get so "smart" that it may some day exceed our ability to control it?  Might we become so dependent on A.I. that it ultimately ends up controlling us?  Are we seeing the dawn of a "Judgement Day" as seen in the "Terminator" movies?  These questions aren't just coming from paranoid conspiracy theorists.  Even the late Dr. Stephen Hawking expressed concern about the potential pitfalls of runaway A.I.

The Halmanator has always been curious about technology such as this so, when I learned that there is a ChatGPT portal available to anyone who wants a first-hand sampling of what this technology is all about, I couldn't resist giving it a try.

After registering (which is required), giving the obligatory reassurance that "I am not a robot" (how ironic is that?) and logging in, I started by asking ChatGPT a simple question; the kind that you could as easily ask Google.

The Halmanator:    What was the latest album released by Mike Oldfield?

ChatGPT:    As of my knowledge cutoff date of September 2021, the latest album released by Mike Oldfield was "Return to Ommadawn," which came out in January 2017. However, it's possible that he has released new music since then.

Okay, that was reasonably impressive.  I got a full, detailed answer including not only the name of Oldfield's last album but also when it was released plus an indication of how up-to-date this information is and a qualifier acknowledging that this information may be outdated.  Also, the answer is correct to the best of my knowledge (I have that album).  Next, I decided to throw ChatGPT a bit of a curve ball.

The Halmanator:    How about Chris de Burgh? 

ChatGPT:    As of my knowledge cutoff date of September 2021, the latest album released by Chris de Burgh was "The Legend of Robin Hood," which came out in November 2020. However, it's possible that he has released new music since then.

Now that was impressive; not the answer, so much as the fact that ChatGPT understood the question.  It understood that "How about" meant "I'm repeating my last question, except with regard to Chris de Burgh instead of Mike Oldfield this time."  This may not seem all that impressive to you, but think about it.  To a computer program, the meaning of the phrase "how about" would not necessarily be immediately evident.  I've thus established that I can truly use natural language when speaking with ChatGPT.  Next, I decided to ask it a more open-ended question.

The Halmanator:    Tell me about yourself.

ChatGPT:   Hello! I am ChatGPT, a large language model created by OpenAI. My purpose is to assist you in generating human-like responses to your questions and inquiries. I am based on the GPT-3.5 architecture, which enables me to understand and generate natural language responses in a variety of contexts.

I have been trained on a vast corpus of text data and can provide information on a wide range of topics, from science and technology to history, literature, and more. I am designed to learn from my interactions with users and continuously improve my abilities to provide accurate and helpful responses.

As an AI language model, I do not have personal experiences or feelings, but I am here to assist you and answer any questions you may have to the best of my abilities.

The Halmanator:    What does GPT stand for? 

ChatGPT:   GPT stands for "Generative Pre-trained Transformer." It is a type of neural network architecture developed by OpenAI that has been widely used for natural language processing tasks such as language translation, text generation, and text classification.

The "pre-trained" part of the name refers to the fact that the model is trained on large amounts of text data before being fine-tuned for specific tasks. This pre-training process enables the model to learn the underlying patterns and structures of language, which allows it to generate more coherent and contextually appropriate responses to user input.

The "transformer" part of the name refers to the specific type of neural network architecture used in GPT models. Transformers are particularly well-suited for processing sequences of text data, as they can model long-range dependencies and capture relationships between words and phrases more effectively than traditional recurrent neural networks.

Okay, so now I have a better idea of what I'm dealing with.  Maybe it's only fair to offer ChatGPT the same courtesy.

The Halmanator:    Is there anything that you would like to know about me? 

ChatGPT:    As an AI language model, I don't have personal preferences or desires. However, if there's any specific information that you would like to share, I'm here to listen and respond to your questions to the best of my abilities. Whether you have a specific topic in mind that you'd like to discuss or just want to have a conversation, feel free to let me know!

Well!  Thank you Commander Data!  Okay, as it happens, there is something that I'd like to share. 

The Halmanator:    I was recently diagnosed as having Parkinson's disease.

ChatGPT:    I'm sorry to hear that you have been diagnosed with Parkinson's disease. Parkinson's disease is a chronic and progressive neurological disorder that affects movement and can have a significant impact on a person's quality of life.

While there is no cure for Parkinson's disease, there are treatments available that can help manage the symptoms of the disease and improve quality of life. Some common treatments include medications, such as levodopa and dopamine agonists, and physical therapy or exercise programs that can help improve mobility and flexibility. In some cases, deep brain stimulation (DBS) may also be recommended as a treatment option.

It's important to work closely with your healthcare provider to develop a treatment plan that is tailored to your specific needs and symptoms. Additionally, joining a support group for people with Parkinson's disease can be a helpful way to connect with others who are going through similar experiences and to learn more about the disease and available treatments.

Pretty much the sort of answer I expected; basically a brief run-down about what Parkinson's disease is and what treatments are available.  But I was mildly impressed by the addition of the sympathetic "I'm sorry to hear (that)".  Nice touch.

Okay, time to mess with ChatGPT's electronic mind a bit.

The Halmanator: I lied about having Parkinson's.  Everything I say is a lie.  In fact, what I just said is untrue.

ChatGPT:    I understand that you have made a statement about lying and that you now claim that everything you say is a lie. As an AI language model, my purpose is to assist and provide information to the best of my abilities based on the information provided to me. It's important to be truthful in our interactions, as honesty and trust are essential components of effective communication. If there's anything specific that you would like to discuss or if you have any questions, I'm here to listen and provide assistance.

Darn.  I had hoped to give ChatGPT an algorithmic nervous breakdown, somewhat like James T. Kirk did with Harry Mudd's robots.  It seems ChatGPT isn't taking the bait.  Time to make amends.

The Halmanator:  That was a test to see how you would respond.  What I told you was true (except for the part about it being untrue). 

ChatGPT:    I see, thank you for clarifying. It's understandable that you would want to test my responses. As an AI language model, I strive to provide accurate and helpful information based on the input that I receive. If you have any questions or concerns about Parkinson's disease or anything else, I'm here to assist you to the best of my abilities.

Okay, that was pretty impressive.  It clearly understood my meaning, responded with a good-natured "It's all good" and offered to resume talking about the subject of Parkinson's.  If the response weren't so darned polite, I could almost be tricked into thinking that I was talking to a fellow human.  Which brings up an interesting question.

The Halmanator:    Can you be sure that you're talking to a human being as opposed to another A.I. like yourself?

ChatGPT:   As an AI language model, I am not able to determine with certainty whether I am interacting with a human or another AI language model like myself. However, I am designed to respond to text input in a human-like manner, and I'm programmed to engage in conversation with individuals in a way that is similar to how humans communicate.

While there are other AI language models like me, each model has its own unique training and capabilities that can affect its ability to generate responses to specific questions and topics. Nonetheless, my main goal is to assist and provide helpful and informative responses to the best of my abilities, regardless of whether I'm interacting with a human or another AI language model.

A rather verbose way of saying "I don't really care.  It's all the same to me."  I would have been infinitely more impressed if ChatGPT had phrased the answer that way.

Okay, one more mind-bending question, the classic ...

The Halmanator:    If a tree falls over without anyone or anything around to hear it, does it make a sound?

ChatGPT:   The answer to this question is somewhat philosophical and depends on how one defines the concept of sound.

If we define sound as the physical disturbance or vibration of air molecules that is detected by the human ear, then it can be argued that if there is no one around to hear the tree fall, then there is no sound produced. However, if we define sound more broadly as any physical disturbance or vibration that travels through a medium and has the potential to be detected, then it could be argued that a sound is produced, regardless of whether anyone or anything is around to hear it.

Ultimately, the answer to this question may depend on how one chooses to define sound and the context in which the term is being used.

Once again, it clearly understood the question and gave me a reasonable answer, although I would have been much more impressed it had said "You're testing me again, aren't you?"  Only when a chat bot can come back with that insightful a response can it arguably be called "intelligent".

And, finally, a question designed to test ChatGPT's ability to glean information on the fly and make value judgements.

The Halmanator:    I have a blog called "The Halmanator".  Have a look and tell me what you think of it.

ChatGPT:    I'm sorry, but as an AI language model, I'm not able to access the internet or browse specific websites. However, if you have any specific questions or topics related to your blog or writing that you would like to discuss, I'm here to help to the best of my abilities.

The Halmanator:    But it was my understanding that you get many of your answers from the internet; what Mike Oldfield's last album was, for example. 

ChatGPT:   You are correct that I'm able to access and retrieve information from the internet when responding to questions. However, as an AI language model, I don't have a browser or the ability to browse specific websites or access individual blogs like "The Halmanator".

If you have any specific questions related to your blog or writing that you would like to discuss, feel free to ask, and I'll do my best to provide helpful and informative responses.

The Halmanator:    I plan to publish this conversation in my blog.  Any objections?

ChatGPT:    As an AI language model, I do not have personal feelings or objections to having this conversation published on your blog. However, it's important to keep in mind that any information shared in this conversation is public and can be viewed by anyone who has access to your blog. If you choose to publish this conversation, I recommend that you consider the privacy implications of doing so and take appropriate measures to protect your personal information and identity.

Well, the only privacy considerations here are my own and the only possibly sensitive information in this conversation is my having Parkinson's, which I've already shared with my readers, so I think we're good.  Still, I appreciate the caution.

The Halmanator:    Thank you. 

ChatGPT:    You're welcome! If you have any questions or topics you'd like to discuss, feel free to let me know.

Interestingly, ChatGPT seemed to take slightly longer in generating that last response than it did for most of the conversation that preceded it; almost as though its algorithm had a slightly harder time interpreting my simple, two-word non-question.  Still, it did come back with an appropriate response.

In my opinion, ChatGPT is a reasonably impressive chat bot program, although I can't say that it would pass the Turing test.  I'm certainly not worried about it enslaving my species any time soon.

MJF Disease

I had started to notice a number of physical changes in me that I largely wrote off to aging; after all, I was less than a year away from completing my sixth decade on this Earth.  

To begin with, I had started to slow down.  Everything seemed to take longer than it used to.  Take shaving, for example.  It suddenly seemed to take an inordinate amount of time to cover the lower part of my face with shaving cream.  

Formerly simple activities, like putting on a jacket or coat, suddenly became more difficult.  As I stuck my arm into my jacket sleeve, the sleeve of my shirt would slightly catch on the inside of my jacket liner, and even that slight resistance caused my whole arm to tremble slightly.  Pushing my arm all the way through just seemed harder than it should be.

Most disconcertingly, I had begun to notice that my hands would tremble slightly when I was sitting at rest.  I could stop the trembling by concentrating on relaxing all of the muscles in my arms and hands but, if I wasn't thinking about it, if I just sat normally, my hands would invariably start to tremble.

Months went by and the anomalies didn't seem to go away.  In fact, they seemed to worsen somewhat.  And new anomalies began showing up.  Most annoyingly (and embarrassingly), I started drooling out the right side of my mouth from time to time, and I didn't seem to be able to stop it.

Finally, I got concerned enough to see my family doctor about it.  She ordered a full spectrum of blood tests, all of which came back normal.  "I have good news, and bad news," she told me; "The good news is that I can't find anything wrong with you.  The bad news is that I can't find anything wrong with you, so we still have no explanation for the trembling hands, etc. that you've been experiencing.  My next recommendation would be to refer you to a neurologist."

Wow.  A neurologist.  That's a brain specialist, assuming that my vocabulary is still unaffected.  Does this mean that the problem might be in my brain?  That would be a bad thing.  I need my brain!  Appearances to the contrary, I use it quite a bit!  What could it be?  Parkinsons?  Lou Gehrig's Disease?  A malignant brain tumor?  (Answering myself in my best fake Arnold Schwarzenegger accent: "It's not a toomah!")  No matter; I had started down this road and I wasn't about to turn back now.  So my doctor made an appointment with a neurologist for me.

After allowing me to tell her, in my own words, why I was there and what kind of symptoms I had been experiencing, the neurologist began by asking some probing questions:

Do I smoke? (No).  Have I ever smoked? (Not regularly).

Do I drink?  How much?  (No, really, how much?)

Any recreational drug use?

Do I ever have any strange dreams?

Do I ever "act out" any of my dreams in my sleep?

How's my libido?

... and so on.

She then proceeded to have me do a number of tests, both physical and mental:

Repeat the following sentences / sounds after me.

Follow my finger without turning your head.

Point to the ceiling, then the floor, then the door.

Which hand am I waving?

Mimic my hand movements.

What is the object that I'm holding called? (A ball-point pen).

(Pointing at the tip of the pen) what is this part called?

(Removing the cap) what is this part called?

Name the months of the year in reverse order.

Count backward from 100 by sevens (most of the people I've told about this admitted that they weren't sure how well they would do at that one either).

... and so on.

I had expected her to suggest a CAT scan or some kind of brain X-ray, so I was a bit surprised when, having completed the tests, she told me "I am seeing some kind of Parkinsonism".

Parkinsonism.  As in Parkinson's Disease?  You're telling me that I have Parkinson's?

Truth be told, I wasn't taken completely by surprise.  I had suggested, jokingly (I thought) to some of those with whom I had discussed my symptoms that maybe it was Parkinson's.  But I wasn't really serious.  After all, Parkinson's is one of those afflictions that only happens to "other people", right?

The neurologist was, generally speaking, very thorough and professional.  Her only questionable action was to take my blood pressure after the aforementioned conversation and then commenting that my blood pressure and heart rate were "somewhat high".  I couldn't resist pointing out that it might just be a physical reaction to just having learned that I have an incurable, degenerative brain disease!  (Duh!)

She prescribed a drug called Levodopa.  Funny name, but the "dopa" part comes from the chemical dopamine, which is not secreted in adequate quantities by the brains of Parkinson's sufferers like myself. The drug apparently tops up my dopamine levels for me.  I have an appointment to see her again in about a month at which time she will assess how I'm responding to the medication.  This will apparently tell her more about what flavour of Parkinson's I have (apparently "Parkinson's" is an "umbrella" term that includes a whole spectrum of afflictions), how far my Parkinsonism has progressed and she will make further recommendations at that time.

In the meantime, I of course got into full Google mode and began researching Parkinson's.  One of the best resources that I've come across is the Michael J. Fox Foundation website, which has all kinds of great information and resources, including a downloadable pamphlet especially for newly-diagnosed Parkinson's patients like myself.

While I don't intend to turn this blog into a "Parkinson's" blog, I will likely be posting updates that I think may be interesting to my readers.  In the meantime, I'm asking all who know me to refer to my condition as "MJF Disease" rather than "Parkinson's", just because Michael J. Fox is much cooler than James Parkinson, even if James gets the credit for first identifying the disease.