Living with Parkinson's - Year Five

Now it is five years ago since I was diagnosed with Parkinson's Disease. Every year, on my anniversary, I write a blog entry regarding the experiences of the latest year. Usually, I summarize this experiences in a single-line title, and this year is no different. It's titled would be "I don't want to deal with it".

The outward indications of this fact are that I greatly reduced my participation in any Parkinson's related activities. May it be online or with regards to actual events, I probably spent 10% of the time of previous years on that subject. The inward indications are very different though. For the first time, I noticed a decline of my health. Not by much, but nevertheless!

Once in a while, my left hand, which had been so far not influenced, starts to tingle and goes numb. In addition, if I don't take my Levodopa on time, or if I forget it at all, I start to feel achy and have a problem moving my legs with ease. For clarification though, I still take the same dosage that I used to do 3 years ago. That means one Mirapex ER in the morning at 1.5 mg, one Amantadine in the morning at 100 mg, 2 Levodopas in the morning at 25/100 mg and 2 at noon, also 25/100 mg.

I believe that my lack of participation is directly related to my increase of signs of Parkinson's. Let me explain: The more I expose myself to others with Parkinson's the more I think about it. This in itself raises my stress level as I wonder what the future holds for me. Also there was a serious increase in stress at work. This stress is not related to Parkinson's or to me as a person, but stems from the position that I have in the company and the decisions that I have to make based on it.

On the other hand, I have volunteered to be a test person in various Parkinson's studies, and I like the idea that I contribute a little to the hope of finding a cure, or maybe at least to the identification of what causes this darn illness to occur in the first place.

The result of all of this is the feeling that I am living on borrowed time. How much longer do I have before it gets so bad that I rely on help from others more than just for closing buttons on my shirt and spreading  butter on my bread? The rational me knows that it's probably quite a while before that happens. The panicked me thinks otherwise. So, in short, the decrease in outward activities balances with the increase in internal troubles.

Each will make for an interesting Year Six,

Ingo

Living with Parkinson's Disease - Year 4

Every year, ever since I have been diagnosed with this disease, I write an entry about the main “happenings” that occurred in the past year, mostly in relationship to the illness. As a matter of fact, that is the reason why this blog even exists as I am not much of a writer otherwise. My past entries (all made in April of the relevant year) range from shock of the diagnosis, over learning to live with it, to wondering what the future will hold.

This year, the main “title” I would choose to sum it up would be something like “What? Another Year?” The disease has moved into the background, I am probably as far into it as I was a year ago, same meds at the same intervals, same issues, mainly my inability to hand-write and the usability of my right hand in general. As a matter of fact, this year is the first time that I did not even remember the actual day of diagnosis, which has already passed as of this writing.

Instead, the three main memories of the past year with impact on my illness are a promotion, the winter, and a game called Destiny.

At work, the leadership rewarded my efforts and input with a promotion that made me the head of all Business Analysts, Quality Assurance Personnel, and the Configuration Team. I most certainly appreciate it and enjoy my new set of responsibilities, but with regards to Parkinson’s the additional workload and overall stress level can for sure become a negative factor and speed up the progression. I think I will keep an eye out for it, as for now I don’t want to have it any other way.

And the winter, well, I said it in my last blog entry, I simply hate it. It was way too long, too cold, too dark, and what not. Parkinson’s and cold really don’t play well together, there is a certain point, call is a chill factor, when within seconds my entire upper body freezes up and I can barely move my arms and shoulders. It is actually also rather painful, in a way that is hard to describe, something along the lines of having excessively exercised and now being super sore.

And lastly, there is Destiny, the all-consuming console game that I play for about half a year now with no end in sight. I am not going to describe the game here, which could be a separate post sometime in the future, maybe. But I can tell you that I spend a very significant amount of time playing it. And for the first time I play a game that involves talking to others (not an obligation, but fun) and forming teams to fulfill the game’s challenges. I am blessed with having made a few friends in the game, so sometimes we “hunt” together and have fun. I know one of them personally and he knows I have Parkinson’s, and I told one other player about it. The rest of them seem to simply accept the fact that I usually score at best half their “kills,” a result of not being able to push the trigger button as fast as they can, caused by the limited usability of my right hand. Occasionally I stress out over this fact, wondering what they think of me. I don’t seek pity and I am not telling anybody else about my disease, but sometimes I would like to be able to say “listen, I am slower than you because I am sick” or the like, but I think it would destroy the lightheartedness of our gamer relationship.

Well, that is all I have to say with regards to the happenings in my fourth year since being diagnosed with Parkinson’s Disease. I have no idea what the coming year will bring, only one thing is pretty much for sure, I will at best maintain my level of disease progression. I will keep you posted!

Thanks for reading,

Ingo

Winter Blues

I hate winter, I hate it, I hate it, I hate it!!!

I really don’t like the cold, the layers of clothes when leaving the house, the chill on every inch that is exposed. I really don’t like all that snow, piled high and doubled up by snowplows, thank you (not)! I really don’t like the darkness, mornings and evenings all the same, coming and going with no light in sight.

So, is it over now, finally done? Man, I sure hope so! The trees are still bare, the grass not yet green, the flowers just poking their heads out of the ground. But raising the hope that soon I will have forgotten these dreary days, these depressing weeks of obscurity, these months of isolation.

Then it will be light, and bright, and warm, and nice, making me wonder how long, how long it will last, until that day when the first flakes will fall again.

A vicious cycle of sadness, fostered by illness and pain.

Ingo

Living with Parkinson's Disease - Year 3

Another year has passed, another year that I live with Parkinson’s Disease, making it officially 3 years tomorrow since I was diagnosed. Like I did so far on every anniversary since this diagnosis, I will describe the main thoughts, with regards to this illness, that occupied me during the last 12 months. But first, a quick recap: year 1 centered around coming to terms that I have Parkinson’s and year 2 was focused on gaining stability and being social about it. You can read more about these in my older blog entries in this blog.

Year 3, well, I would say that, in essence, two questions sum up everything that was, and still is, my major struggle with this disease: Since when do I have it and when and how will it all go down?

So, since when do I have PD (Parkinson's Disease)? As mentioned before, officially since 3 years tomorrow, but obviously I didn’t get it on that day. So, then when was it? I cannot say for certain, but I assume quite a while earlier. I base this on information like this one from Wikipedia: “Changes in perception may include an impaired sense of smell, sensation of pain and paresthesia (skin tingling and numbness). All of these symptoms can occur years before diagnosis of the disease.” I started to have numbness around the time of diagnosis, but I had a strange and reduced sense of smell since many years earlier.

Also, it states that there is “…an effect of nicotine as a dopamine stimulant. Tobacco smoke contains compounds that act as MAO inhibitors that also might contribute to this effect.” I have smoked for over 20 years prior and only quit 2 years before being diagnosed!

An additional indicator for having the disease was my guts feeling that something in me was changing, leading to a strong believe that I was going to die. This in turn caused a "professional" evaluation of me as being depressed, which was probably true, but only a symptom of PD and not the main issue. But nobody dug in that deep at the time.

My usual conclusion to the “since when …” question is: who knows, probably since between 5 and 25 years! You may think that it is not important to know this number as what is done is done, but the answer leads directly into my other main question of this last year, namely “How much longer do I have, and then what happens?”

OK, I cannot change the past, but I can influence the future, or so I choose to believe. Exercise, good medication, a good diet, low stress (yeah right, that will happen), and a positive attitude all can help to stretch the progression of the illness. But the key is, it is a progressive illness with currently no cure (and none in sight). And sadly, there is also no formula that can be used to calculate the progression; it behaves different for each person. If I were to know that in so-and-so years I will be in such-and-such shape then I could prepare myself for it, by one means or the other, but no such luck.

So, almost daily, ok, probably multiple times daily, I ask myself at least one of the following questions:

Did I just see a new symptom of progression?

How much longer can I work? Should I quit working now?

Am I wasting my last few good years?

What will happen to me when it gets worse? And what symptoms will I develop?

When will I become a burden to my wife and children (besides being the pain in the rear that I am already anyway, haha)?

And, as I am by profession (and talent) an analyst, I of course also have to face the elephant in the room and ask myself the question (on a purely analytic and logical basis) if suicide should be an option.

I know this all sounds grim, but let's be real, this is no fun disease! I am currently doing rather well, but I know that today is the day when I am in the best shape of my remaining life. Every additional day will be marked by yet even more of my few remaining dopamine producing cells dying, every day will see some minute decline, every day brings me closer to the end.

This all may be hard to understand for someone who does not have Parkinson’s, but my fellow sufferers will most likely be nodding when reading this blog. Although our symptoms vary, and the progression for each one of us is different, we nevertheless have an invisible bond that connects us, no words are needed to know how much a fellow Parkie (that’s what we call ourselves) is suffering.

I wish I could present you a more optimistic outlook, but fact is: The End Is Not Pretty! The question is only when will it happen.

In the meantime, let’s see what year 4 will bring!

Thanks for reading,

Ingo