This bit is a little dated and not to all tastes, for sure. Nonetheless, here you go.
Some random thoughts on living with PD for 26 years:
1 When first diagnosed, patients are often told, "Don't be too troubled, PD isn't a death sentence." What you are not told, and something that takes a while to sink in, is that PD is a life sentence.
2 Every time you go to the pharmacist for a change in medication, you are told the same thing: "I'm afraid this new item is a little bit more expensive than what you've been taking."
3 As time goes by, your visits for regular check-ups amount to this: Tap your fingers ten times, tap your toes ten times and leave four hundred bucks on your way out.
4 Feeling lousy becomes so routine, it can almost be considered a positive; it's a kind of manifestation or confirmation that you are "holding the line" against condition symptoms.
5 It's only a matter of time before I'm "outed" as a menace behind the wheel. Visuo-spatial problems have lead to difficulty in driving in a straight line, a practice that tends to attract unwanted attention from law enfocement.
6 Drool me a river. It's getting tougher and tougher to appear normal in public.
7 You never have to pick up a check at a restaurant. During the time it takes to get your wallet out of your back pocket, someone in your party is certain to lose patience and pay the bill out of sheer boredom.
8 and a half. Cognitive trouble? None that I've noticed. I was looking for something the other day, found it, then couldn't remember what I needed it for. Maybe I'm confused.
9 After all this time with no health insurance, why worry? A recent bill for a shoulder dislocation came to a paltry fifteen thousand all out of pocket dollars. That's chump change, for sure.
10 The flavor of the day is apathy. For example, I used to be pretty good at keeping up with cutting edge trends in relation to PD research. Just now, I don't pay much attention. Wake me up when there's a cure.
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slapdasch4
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Though I can't assess you in real life but based on your writing (presuming you typed this post yourself) and your sense of humour, you seem to be doing extremely well for a person living with PD for 26 years.
I dread to even think that far with my self, I probably would be half dead by then
26 years has been a long haul, but, yes, I'm still able to do things like type, as long as I'm willing to accept the whole process will require endless patience and take forever. Some philosopher once defined intelligence as "the extent to which you accept things as they are because they have to be the way the are." If that's true, maybe I'm getting smarter every day.
Thank you for this! There are over 20,000 members on this forum and I can't ever remember getting the 26 year view of life with PD on this forum. So although this is old news for you, it is new news for me that I have always wondered about. It is good to hear that you are doing as well as you are and still typing! Thank you for taking the time to write this and I hope you share regularly as these ideas of long distance PD pop into your head!
Your comments include some useful reminders, especially your point about what is old news for me still being new material for others. I taught English as a Foreign Language as a "career" and often attended conventions. One of the things that made these meetings worthwhile for me was the fact that you always met people seemingly working under conditions and circumstances that on the surface were very unlike your own. Something beyond surface discussion made you realize that your trials and tribulations were pretty typical and that you weren't just working in isolation. And I think that this recognition of commonality is also useful in dealing with a condition like Parkinson's.
Sadly, I see the same things beginning to happen, with me, as time goes on. Apathy has become a big problem for me. After while, one finds out, that PD is not just an irritating, annoying ailment, that, we are told, one doesn’t die from! It becomes a curse, for some, with hope dimming, as time goes on. Yet, we must make the best of what we have left to work with, in order to just basically, function, and get through each day. As the saying goes “hope springs eternal”!
Aren’t you eligible for some type of health insurance? It would really irk me if on top of dealing with getting so much medication and seeing doctors I had to pay so much money. Best wishes
It's the one thing I'm bitter about in this whole saga. I went 19 years without insurance coverage, which obviously cost me a ton of money; no one would touch me dueto having a so-called pre-existing condition. I do have coverage now but that doesn't make me feel much better about the past
Xlnt Slappy....After visit with my neuro yesterday, I needed a good laugh and a new perspective on my 14+ PD journey. MJ Fox might respond to your post to one-up-you as he's about 30 years and counting or Michel's Matt Eagles, dx'd age 7 & 46 year journey (can't believe I'm writing those numbers). Are you sure you are not a Bot, ✔ this 🔲 and say the months backwards. No matter how long the journey, Happy Holidays and Healthy New Year to my HU Family🌍🌎🌏Eric
Thanks and best holiday wishes to you and your family as well. Speaking of Michael J Fox, I once wrote a set of Pd in the news fictional headlines for different sections of a newspaper."In entertainment news: Micheal J Fox to star in Lone Ranger remake; says can pay partwith -out mask."
You spoke to me. Somewhat unfortunately, I have to admit. My sister keeps sending me neuro articles about the cure being around the corner and truthfully, I find it irritating at this point and I’m only 7 years in. Just call me, when there is a real cure.
2, 3 & 9 aren't relevant here in Australia, that must be so tough fully paying for your meds and neuro appointments. My partner pays around $3 a month for her PD meds and $0 for her zoom consultations with her neurologist. It's no wonder the US, with it's health care inequalities, has one of the lowest life expectancies (46th) in the developed world.
I spent nearly 2 years in Australia, mostly in Perth, in the early 1980s. I recall at least a couple of conversations with native Aussies comparing quality of life in the US and Australia.I didn't then, and don't now, need much convincing that you've got the edge in the area of health care
Depends. I dealt with Canadian and US health systems. Definitely the US is much better if you have a job providing health insurance. But if I did not have US insurance then the Canadian system would be better than nothing.
slapdasch4--I love the humor and wisdom with which you write. Thank you for sharing. I am almost ten years from my diagnosis. I told my neuro at last appointment that with focus, concentration, and much effort, this disease is tolerable. He paraphrased that the disease was manageable. "Not manageable," I corrected. "Tolerable." Humor helps, Thank you again.
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