Living with Parkinson's - Year Six

Welcome to my blog! This entry marks another anniversary of the day when I was diagnosed with Parkinson’s Disease. On April 7th, it will be six years since I have been diagnosed, and if you review my previous annual updates you will see that for each of these years I provide also a separate title that sums up the experiences of the year. This year, that title is “Ch Ch Ch Changes.”

And changes it were indeed! From the deaths of various famous people, David Bowie - from whom I borrowed the title for this year - being one of them, over having a new President - and I won’t comment on any politics here - , to the status of my illness and as such my overall well-being.

So, let’s begin with the good news. My regiment of Parkinson’s related medication has not changed from last year, being three Mirapex, one each in the morning, midday, and evening at 0.5 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. The only difference is the change from one Mirapex ER to three regular Mirapex with a third of the dosage each. And that is pretty much where the good news end, but maybe that is relative!

So, while I am on the same medication in type and quantity as I was last year, my dependence on taking the meds on time has greatly increased. For example, missing the lunch portion of meds had no impact last year, but now I feel “weird” after only a few hours. And if I happen to miss multiple sets in a row, like lunch and dinner, I will need hours after taking the meds the next morning before I function “normal” again.

Equally, my tolerance of stressful situations has dramatically declined. Most obvious here is the tremor in my right leg that begins as soon as my stress level is increased, for example when dealing with officials (more later), or while dealing with a situation that was not anticipated, like unforeseen airplane departure changes, and so forth. Also declined has my ability to use my right hand for anything that requires fine motor skills. Last year, hand writing was very hard, this year it is almost impossible! Things like putting butter on bread are so stressful that my leg starts to tremble, even after I switched from butter to an easier spreadable margarine. And let’s not forget the last winter that seems to be finally over! Whenever it was cold, I could barely move my right arm, sometimes even both arms, and the entire upper body stiffed up and was in pain.

But the biggest change of all is that I stopped working last July after a scary incident. I had a massive heart attack at work, or so I thought. Stress about working and the associated responsibilities got so unmanageable that my psyche faked a heart attack, with all the pain that comes with it. I sat in my office chair in major pain, for over an hour, thinking I will either die or have open heart surgery before the day is over. This was the first time that I realized the tremendous psychological impact that Parkinson’s has on me, and when I combined this with all my physical issues I decided that enough is enough. I knew right away that I will have to take better care of myself if I wanted to slow down the progression, and one major contributor to that progression which had to be eliminated was work.

As a result, I went first on Short Term Disability and then on Long Term Disability, and I am currently in the application process for Social Security Disability. And if you ever had to go through that process then you know what I am dealing with, not the low level of stress that I need, that’s for sure! Nevertheless, I am most certain that not working has helped me a lot with maintaining, or at least slowing down, the progression of my illness. I spend most of my days walking the dog, watching TV, running errands, and doing laundry. But occasionally we, or I, go on vacation and that is then my chance to enjoy my favorite hobby, photography! And because shooting hand-held is not so easy anymore, tripod and remote shutter release have become my best friends. I hope to be able to add a few nice photographs to my collection this year, and in the years coming as well.

To sum it up, I feel like I am currently living on the Event Horizon and that sooner or later I will be sucked into a Black Hole where my illness will be so bad that I will have trouble finding enjoyment in life. With my decision to no longer work I hope to stay on that current level for a while longer than if I would have worked myself into the ground. Life is too important!!!

Thanks for reading, and I hope you understand,

Ingo

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