goin' old school?

Eron- Old School Graffiti, flickr

My 14 year old son tells me no one uses Facebook anymore.

I'm sure a few months ago he had "friends" he'd never met. "Talked" with them a lot, but never met. When I was 14, I practically lived with my friends day and night.

Yet today's technology opens so many new doors for young people that my 14 year old self could never have imagined. And with each new development, they seem to adjust and keep pace with relative ease. Something my older generation is not nearly as adapt at doing.

The past few years I've tried to make a concerted effort to "catch-up" to technology and social media with mixed results. I've dipped my toe in a few different networks but most of my activity has been on Facebook, Twitter and this blog. Every so often, I'll get frustrated at the plethora of fluff or material that is of little interest, but I also have found my share of "diamonds in the rough". In particular, social media has allowed me to track down and keep in touch with former friends, colleagues and extended family. As well, I've met new folks whose lives have been impacted by Parkinson's Disease. We've been able to share our experiences, provide support when it's required, and grow in ways I wouldn't have expected.

I have been somewhat guarded with my "friends" list - I haven't added everyone who has requested to be my friend nor have I sought to "pad" my number of friends. I'm aware of concerns with regard to spammers and fraudulent representation on-line. Perhaps, I've not been particularly diligent about purging the list of people who I have had more limited contact with but this is, in and of itself, relatively harmless. 

Recently though, I've had a few experiences that make me wonder. I met a fellow PD blogger through our respective blog sites. We were kindred spirits and had regular on-line contact several times a week covering a wide range of personal, health and social issues. I would have said that in the course of a year or so, we were becoming good friends. A friend I'd never met. Yet the more we talked, the more I wanted to meet this person - in person. We came close, but it hasn't happened and I'm not sure it will. I find I am vulnerable to investing too much of myself - emotionally and intellectually - into relationships with "friends" who, for whatever reason, I'm unable to meet. 

I've also had friends who have taken the liberty of adding me to social groups as a friend without seeking consent or first gauging my interest. Perhaps I'm a little old-fashioned in this regard as well but I would much prefer to be "invited" to join a group. Invite me to join a group and I'll likely lap up the invite - put me in a group and I'm much more likely to want the h___ out!

I do think that Zuckerberg really did strike a chord with Facebook and this "friends" concept (though that's stating the obvious). This is especially so in a world where we tend to be more isolated (and that's particularly true for those of us with PD). This network of "friends" can bring another rich layer into one's life - even if it is not always a mutually fuelled or sustained effort. Tonight, I'm betwixt and between - do I adapt my concept of friends to reflect life on-line or, when it comes to choosing my friends, should I be "goin' old school?"
   

Dear Abby (spotted in the advice columns)

Dear Abby, Dear Abby...
My feet are too long
My hair's falling out and my rights are all wrong
My friends they all tell me that I've no friends at all
Won't you write me a letter, Won't you give me a call
Signed Bewildered

Bewildered, Bewildered...
You have no complaint
You are what your are and you ain't what you ain't
So listen up Buster, and listen up good
Stop wishing for bad luck and knocking on wood

Dear Abby, Dear Abby
My fountain pen leaks
My wife hollers at me and my kids are all freaks
Every side I get up on is the wrong side of bed
If it weren't so expensive I'd wish I were dead
Signed Unhappy

Unhappy, Unhappy...
You have no complaint
You are what your are and you ain't what you ain't
So listen up Buster, and listen up good
Stop wishing for bad luck and knocking on wood

Dear Abby, Dear Abby
My Parkinson's stinks
Seeing doctors and nurses, counsellors, shrinks
I'm stiff and I'm sore and I can't stand the cold
This friggin condition just makes me feel old
Signed Frustrated*


I don't know what advise Dear Abby would have for "Frustrated", and my concerns today would not only be too long for publication in any advice column, but they don't make up the material for a very good song. So, dear readers, I turn to you for your advise. Here's what's bugging me today.

For the past two and a half years, I have been fortunate to participate in a clinical trial for a new way of delivery for my PD medication (Duodpoa). This treatment (see previous post here) uses a portable pump, and a daily drug cartridge, which through a tube, releases the medication directly into my blood stream. The fact that it is slow-released, and so direct (avoiding the problematic gut), makes this a far more efficient process. I have less fluctuations throughout the day, less dyskenisis (the wild flailing of arms and legs) and better overall functioning.

When the clinical trial came to an end, and Duopopa was approved by Health Canada, I began to receive my medication "on the market". Instead of regular visits to the hospital to pick-up my cartridges, a specialty pharmacy was engaged to deliver them to my home once a month. Sounds good so far, right? Sure, but here's a little more information for you. Here is what one cartridge looks like:

Each cartridge weighs roughly 1/4 lb and is 3.5"X3.5"X1" and is constructed of a hard plastic shell that encases a soft plastic cell which holds the liquid gel medication that is dispensed through the plastic tube. While individual amounts will vary, I currently consume about 60% of the medication in one cassette a day. Since the medication needs refrigeration, the prescription regimen requires that one cassette be used per day. The remainder is "discarded". Here's our first hint at my discomfort. First, some more facts and photos for your sensory pleasure.

Here's what one week's supply of duodopa cartridges looks like:

And, when consumed, I add it to a little collection that I have that looks like this:

These are 2.5' square styrofoam coolers that are used to ship 4 week's supply of cartridges to my home. Each styrofoam container is packed with 12-16 ice gel packs (each weighing approx. 1 lb). After a few months, my styrofoam "stack" began to look like this:

Each month, my collection grows. During the clinical trial, I returned all used cassettes to the hospital and was advised that they were being returned to the manufacturer for sterilization, proper disposal of surplus duodopa, and re-use of cartridges. However, once the product came "on market", the pharmacy and the manufacturer, have advised me that the used cartridges (including the surplus duodopa) are to be "disposed of" in regular household trash. Same with the ice gel packs. The styrofoam coolers would not be collected for re-use either but "may be accepted by municipal recycling programs". 

While I make no claim to being a perfect environmental steward, I certainly have become much more strident in the last decade or two. Yet everyday decisions I have been making - from consuming less to buying package-free products to recycling to reducing carbon emissions to name a few - suddenly felt minuscule in the face of the new "waste" that was being generated by my use of duodopa. I have not "disposed" of any of the materials to date and have stored everything in our (crowded) garage. I have expressed my concerns to both the manufacturer and the pharmacy but, as yet have had limited success. Starting this month,, a new pharmacy has been engaged and the cartridges will be collected and the surplus duodopa sac will be extracted for hazardous material disposal (the hard plastic case cartridges will still be "disposed" and not re-used).

That's the first albatross I carry. The waste. The second? The cost. I am extremely fortunate to have excellent private medical coverage, courtesy of my last employer and our union. At present, this covers most of my drug costs - including the full cost of duodopa- until retirement. And what exactly does a day of duodopa - one single cassette - cost you may wonder? $195 a day. Almost $6,000 a month. Over $70,000 a year. And that is just the cost that is billed to my insurance company. The ultimate costs are significantly more. We know that insurance companies don't pay these bills for philanthropic purposes. They need to make profits for their shareholders and these costs will eventually be recouped through increased premiums for all. Furthermore, while I recognize that drug manufacturers need to recoup investments made in drug development and the manufacturing process, it seems perverse that they could charge this much for this medication. Without private insurance, who could afford to take this medication? 

In the past few years, I have met many people with Parkinson's who could benefit from duodopa but, without drug coverage, cannot consider this an option.  Moreover, consider the cost of this product - one person, one year, $70,000. Contrast this with the social and economic conditions in much of the developing world. Obscene. Welcome to my third albatross - guilt. 

And so, Dear Reader, you see I am conflicted by the symptomatic and physical benefits of this new treatment and the weight associated with its use (to say nothing of the physical weight of the pump itself!). Any sage advice? I''m listening up Buster and listening up good!

* Lyrics by John Prine (except the final stanza, I take all the blame for that one!)
** Thanks SR for the link to the video version!