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

On Running

There was a time in my 20s when I ran the 5k in under 20min, and six months before my Parkinson's Disease diagnosis I ran it twice at around 30min (@ age 48), but today I don't dare to run it at all anymore.

And there are 2 reasons for it:

1) I am afraid how the exhaustion would impact my slightly shaky balance as I sure would hate to fall, for pain and embarrassment reasons.

2) The mental defeat I would suffer if I can't make it! I always drive myself pretty hard and don't like to loose, even if the one who beats me is just my own inability to succeed.

But, there is also the chance that I have actually only one reason, it being the second one listed here! Meaning, maybe my worries in 1) are manufactured to protect me from 2) ever to happen.

Who knows?

Ingo

The Agony of the Third Third, or Exercising with Parkinson’s

About three months ago I bought an elliptical trainer and since then I use it about 2 to 3 times per week. Most of the time, I am using an interval setting that switches every 2 minutes between an easy setting of going almost flat and with low resistance and a hard setting of going uphill with high resistance. The program repeats the process for 30 minutes in total, with an additional 5 minutes of cool-down, but the latter can be neglected as it is only meant to gradually get the body back to a normal “all day pace.” For me, the 30 minutes of workout can be broken down into three equal parts of 10 minutes each, whereby in particular the first and the last part are the most challenging segments.

The First Third

This third can also be described as the third of quitting. Why? Well, because that's the time when I mostly have thoughts like “I can't do it today, I am too tired.” Getting into the groove is hard for me, I'm not warmed up yet, my muscles are not loose, and my mind is playing tricks on me. My thoughts circle around the remaining 20+ minutes, and my mind tries to persuade me that I can't do it today, that I am not in shape, that I should give up, that I should do it some other time! Once in a while, my mind wins and I stop the exercise. But most of the time I am pulling through this by knowing that the feeling will fade away when the next segment of the exercise begins.

The Second Third

Well, not much is to say here, as I'm in the groove! Things are working out for me, my energy is at peak, my muscles are loose and I enjoy the exercise while listening to music on my headphones. I'm thinking about how many strides I will be able to make, as I am always measuring my performance. Sometimes, my mind begins to wander, I'm thinking about work and about life in general, about Parkinson's and about all kinds of other things.

The Third Third

This is the third of agony! I am counting down each interval that I have already completed, and I am looking forward to the end. I am having a hard time maintaining my pace. By then I'm soaking wet and the sweat is running over my face, I am watching out that it doesn't run into my eyes as it burns and I can’t see anything for a few seconds. In addition, even during the easy interval does my heart rate not drop below 145 anymore (the high, btw, is about 170). This is also the time when I wonder if I can ever run on the street again. I used to be pretty good at running 5Ks, nowadays I wonder if I can even stay on my legs. Will I trip? Will I fall? Will I bruise my body and face? I'm scared of even trying! What gets me through it is the music in my ears and the knowledge that the session will be over soon. Also, looking at the strides I've already taken and calculating how many more I can accomplish helps me through this third. Once I reach the last few minutes things start to get better again and I pull out my last reserves. I know it is over soon, and I know I will feel great, and I know I will be proud of my accomplishment.

And then it's over! Minutes of winding down go by in no time, and I'm glad to get off the elliptical trainer. I am soon thereafter already looking forward to the next exercise session, and it is not long until the agony of the third third is upon me yet once again.

Ingo

Living with Parkinson's Disease - Year 2

Today marks the two year anniversary of my Parkinson’s Disease diagnosis. While the first year was mostly spent with coming to terms that I have Parkinson’s, the recent year was focused on gaining stability and being more social about it.

Stability has been mostly achieved, when I discount days where “uncommon” activities, like flight preparations or large family events, cause me to have a harder time functioning with limited symptoms showing. An unchanged level of medication for this year keeps me able to work at almost normal intensity, which, if you know me, is rather high. The main problem for me is the very limited usability of my right hand, making handwriting extremely hard and exhausting and typing on the computer more of a left-hand-only activity. Fortunately, my work involves a lot of thinking as well, 100 intelligent words are worth more than 1000 blah-blahs.

Stability, on the other hand, has also been reached by cutting back on certain activities, which saddens me quite a bit. Photography has taken a backseat, for months I have neither taken nor published any new works, with very few exceptions. And for about half a year, if not more, my participation in various social sites was close to nil. I also often worry about the future, mostly concerning questions like “how will I progress?” and “how many good [relative] years do I have left?” Any day on which I am even only slightly off my normal level of symptoms causes a mild panic and quite a bit of useless worries and stress.

Yet, during the last year I also managed to improve and not only maintain the status quo. I am working out now, an activity that I never liked much, and I see a Physical Therapist once a month for extra credit. This certainly has made it possible for me to regain some of the strength that I had lost prior, even some that I never had before.

On the same note, improvements on a mental level have also been made. A major factor here has been that I dared to open up to other Parkinson’s Disease sufferers, or “Parkies” as we as we refer to each other affectionately. This was made possible when I met a person who happens to run a group for Early (or Young) Onset Parkinson’s Disease victims [YOPD] on Facebook and invited me to join. There I met a whole variety of people, some as young as 20something, and some much worse off than I. Learning from these fellow Parkies that I am not alone, not even in my darkest thoughts, is the biggest improvement to date, they truly understand me like no non-suffer can (although some, like my daughter, come pretty close).

My activity in this group has also other positive side effects; I can feel the urge to rekindle my participation in other social sites. If it weren’t for the darn typing and a boatload of work [at work] I already would be fully engaged again! A loooong Winter here in the New York area is now finally also slowly coming to an end, hopefully giving way to some good opportunities for photo shoots. Oh, and speaking of New York, seems like I will meet thousands of Parkies when my family and I will participate in this year’s Parkinson’s Unity Walk in beautiful Central Park in Manhattan.

With that said, I hope to have many more years of writing about my anniversaries, maybe one of them will finally mention a cure and reset my counter to “year one after Parkinson’s!” I keep my fingers crossed!

Ingo