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

Eeny, Meeny, Miny, Moe Or When to Switch Your Parkinson’s Medication?

Recently, a fellow sufferer asked our Parkinson’s Disease community that question. More precisely, if it seems to be the right time for her to switch to the medication that provides L-DOPA (levodopa), which is used to increase dopamine concentrations, and know under the brand names like “Sinemet, Parcopa, Atamet, Stalevo, Madopar, Prolopa,” and the likes. [Many thanks to Wikipedia for the information provided in this blog entry!]

Without getting into too much detail, her question arose primarily because the Parkinson’s symptoms started to seriously interfere with her ability to fulfill her job. Also, just like myself, she was sick and tired of the inability to naturally swing the arms when walking; instead the arms just hang down or they are held in a slightly angled position.

To me, her question hits the spot as I myself wonder about such a medication switch every day at least once. And, just like it is for her, this disease is interfering with my ability to fulfill my work tasks the way I would like them to be fulfilled. My handwriting is severely handicapped, my typing somewhat as well, and for a Business Analyst that is a substantial part of the job. Fortunately, I still can type and do my work to everybody’s satisfaction (I hope, haha).

My biggest concern is the fact that these types of meds tend to loose effectiveness over time, requiring the patient to take stronger dosages and to increase the frequency of usage. And at some point, the meds will not help anymore at all, requiring a change in the treatment process all together. So, once I start on these meds, how much time will I have until it goes downhill, 5 years, 10, 20? Would it be better to have these years now, or save them til later, and if the latter is the way to go, then until when do I wait?

Almost as big is my concern about potential side effects of these meds, they are not easily dismissed. There is a long list of them, but in particular dyskinesia seems to be very prominent. Based on Wikipedia “these motor fluctuations occur in more than half of PD patients after 5–10 years of L-DOPA treatment, with the percentage of affected patients increasing over time”. It further states there that “Therefore, once established, [dyskinesia] is difficult to treat” and - I could not have said it any better - “patients with the young-onset form of the disease or young-onset Parkinson's disease (YOPD) are often hesitant to commence L-DOPA therapy until absolutely necessary for fear of suffering severe dyskinesia later on.”

Yet, without any hesitation, the Parkinson’s Disease community responded to the original question unanimously with “switch now”, “I wish I had it done earlier”, “switching was best decision ever” and the like.

Being the worrier that I am, the questions I ask myself over and over again are: do I suffer now for certain a somewhat more than I have to, or potentially a lot more later on? And how long will I live anyway, do I save myself for a time that will never come? And if it comes, how high is my quality of life at that point, for all I know I may be under the spell of dementia by then?

I fear the side effects, they hurt and are very disabling, and I fear the time when the meds will stop working for me even more. But I also want to feel well and act normal NOW! Maybe I should play a game of “eeny, meeny, miny, moe …” to figure it out!

Ingo

Failure and Success

A few weeks, ago I spent some quality time with my wife while our children were away in sleepover camp. We used this chance to get away for a weekend and booked us into a cottage near a group of waterfalls that I really like, close to the Delaware Water Gap in Pennsylvania. So far so good, but there were some hurdles to take in order to make this an all-around successful trip.

The issue was “how to get there?” Sure, my wife can drive, but that was not the point. Instead, I wanted to proof that I can STILL drive. I guess I have to explain this a little, in case you haven’t heard this story before. About 2 years ago, we took a trip to Colorado and among many other things we drove from Durango to Ouray, on the famous “Million Dollar Highway.” You know that one? No? Well, here is some info: 1 lane each direction, across 2 12,000 feet (or more) passes, via steep inclines, hairpin turns, and no shoulders or guardrails, with drops right next to the road, straight down for what seems like thousands of feet!!!

In short, having already had Parkinson’s, but still being on almost no medication at all (having just been diagnosed a few months earlier), my right leg was shaking so vividly that it was hard to push the gas paddle consistently and I feared for my family’s and my life in ways I never experienced before. The following day, I could not even drive on a wide highway in flat country, still shaking. It shocked me so bad that I completely lost my confidence in driving on a street outside of my hometown. The result was that my wife had to drive more than the liked, including on that excursion in Colorado.

OK, so back now to current trip to the waterfalls. Well, I drove us there, and back as well, and on all the roads traveled in between! Yep, occasionally the leg was still shaking, but very mildly, and occasionally my hands gripped the steering wheel like I wanted to have a mind-melt with it, but for the most part it was a good driving experience that allowed me to look forward to another road trip in the future, with me as the driver.

Oh, and the waterfalls? Well, that was a failure, haha, as recent rainstorms caused too much water in the streams, making for very poor conditions to photograph a smooth silky flow of water in the falls. Not to mention that an overhaul to the pathways took access away from the really good shooting spots! But life is not all about photography, and at least as far as this particular weekend was concerned it was completely irrelevant, what mattered was that I regained something that I thought I lost forever!

Ingo