Nothing stays the same. Some of you will remember and even miss the days of what was. Remember screen test patterns * the fall of the innovative company, General Magic * the magic of hit toy, Teddy Ruxpin * no more Friday night rush to Blockbuster Video * the love of the video game arcade * the hilarity of Celebrity Death Match * the intrigue of the cartoon, Jonny Quest * the wonder and excitement of going into a magic store * or having ice cream in NYC at the long gone ritzy and elegant NYC ice cream parlor, Rumplemayer’s, * the lessons of Fractured Fairy Tales, and the teachings of School House Rock * the breakthrough of cassette tapes and the frustration of finding your song on an 8 track * the challenge of finding stored computer files on cassettes and floppy discs * the disappointment of Al Capone’s vault and new Coke * the loss of childhood candy with real sugar and real ingredients without fillers and fake stuff, corn sweetener or xylitol, sorbitol, or dyes * when there was no Web access and you actually talked to librarians and experts on the phone or by mail * when you typed code of computer language out of a book to develop a game with very limited features for hours only to have to retype it again, because you missed a comma or a character—making for retyping of hours of editing * only having access to music and pictures to what you bought in the Record Bar or Tower Records and pictures that you took on your disc camera or instant Polaroid * when disco died and country was cool and real * remembering television stations signing off at night to end their day of broadcasting and there were only 3 stations to choose from because cable wasn’t created * books were treasured, revered, and read as a choice of education and entertainment but they didn’t rival television because many of the books were better than lots of the programming * when radio preceded television (I was too young) but I do remember listening to years of American Top 40 with Casey Kasem and hours of radio, both day and late into the night * a small handheld Sony portable television made television viewing mobile * when people met in the classified ads * when infomercials were new and Mr. Microphone and the Pocket Fisherman reeled you in.
Change is inevitable. From my experience, people with Parkinson’s disease are not wild about change. I am not big on change, but I try to embrace innovations and new technology, as best as I can. Some changes are easier than others. Flexibility and resilience can go a long way with Parkinson’s. Life has changed in a rapid and dramatic manner. Our lives will change as will the rules of how we interact with the world and those close to us. For the foreseeable future, we must envision the welfare of others and see that we mask ourselves to prevent the spread of the contagion and minimize danger to those at risk.
Today, of all days is the perfect time to discuss the subject of change. Today, in the United States, millions of voters will have the opportunity to let their voices be heard with a single vote to impact their government. Millions of dollars will have been spent in campaign advertising to insult their opponent, praise or question the current or past administration, or just be terribly annoying, until the next election.
I, for one, cannot wait to see these divisive, bitter, mudslinging, name-calling, unbecoming, childish, messages turn into vapor and return to the barrage of those amusing pharmaceutical ads that we all enjoy at breakfast and dinner time.
If just a small percentage of this political advertising bounty were used to inform the public about the needs of the Parkinson’s world, we could educate the planet on identifying, treating, and caring for patients far earlier in their treatment and improving their care for a disease that has no cure. What could be a more noble use of funds than educating the masses about an illness that is so misunderstood and so poorly explored publicly?
Parkinson’s disease is the second most common neurological disorder in America with an estimated 6 million cases worldwide and approximately 1-1.5 million people in the United States. Even these numbers are suspect for lack of updating and availability to necessary data for making better estimates. For as far as we have come over the 52 years of my life and the 30 years that I have lived with Parkinson’s disease, I see a need for a similar buzz for change, much like the excitement that is in the air on this election day and eve.
I am quickly nearing the age of 50. To many of you reading this, 50 isn’t old. I don’t consider 50 old either, but I have had Parkinson’s disease since age 17, and that means I’ve had it for a long time.
When I was given my diagnosis at the age of 23, I was told by several people in the PD community that I would see a cure in 5 or at least 10 years. A quarter of a century later, I didn’t expect a cure but I had hoped science had developed better drugs, therapies, and that hospitals and retirement homes would have better understandings of how to care for people with this disease.
What is it going to take for the world to understand Parkinson’s disease? What is it going to take to develop new drugs with fewer side-effects? What is it going to take to get Parkinson’s disease seen as an illness that needs assistance, right NOW!