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John in Virginia

10 good years???

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Sorry to raise such a depressing topic, but when discussing Parkinson's with my neurologist (I don't see an MDS until September), he mentioned I could expect 10 good years, but not 20 or more.  I am certainly no expert on the topic, and understand that the disease progresses differently in everyone, but that struck me as overly generalist and quite possibly wrong in a younger person (I am 48).  I have read numerous accounts of people diagnosed when they were young and who are doing well or still getting by reasonably well 20 years later.  Am I mistaken to take issue with his statement?  Just caught me off guard and I can't seem to shake it. 

Edited by John in Virginia
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Every person is different. Exercise and stay active.... research changes things all the time. Treatments may be different 5 years from now. I refuse the accept a timeline unless it’s about tomorrow. Guess I’m naive but I don’t have a “good years “ plan.  And what’s the definition of “good?” PD changes your life but it’s still your life just different. My last blog post was called Give & Take.....PD does take things but it gives you things you never expected And they are not all bad. 

 

https://ladpdjourney2.wordpress.com/

 

Stay strong & stay hopeful 

 

LAD

Edited by LAD

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53 minutes ago, John in Virginia said:

Thanks for your kind words!  

No problem...feel free to check out my blog 

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John, don't pay any attention to the neurologists you saw. I was diagnosed in 2010 by a general neurologist whose only advice was to read everything I could about PD. Certainly bad advice for me. I scared myself for three months until Dr. Okun suggested I find an MDS. The general neurologist didn't even know they existed! 

Eight years later, I've progressed yet am able to live alone. PD is referred to as a snowflake disease. Each person's experience is different.

If it hasn't already been said, begin or continue an exercise program and wait for guidance from the MDS.

Best wishes as you begin your PD journey.

Dianne   

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7 hours ago, Beau's Mom said:

John, don't pay any attention to the neurologists you saw. I was diagnosed in 2010 by a general neurologist whose only advice was to read everything I could about PD. Certainly bad advice for me. I scared myself for three months until Dr. Okun suggested I find an MDS. The general neurologist didn't even know they existed! 

Eight years later, I've progressed yet am able to live alone. PD is referred to as a snowflake disease. Each person's experience is different.

If it hasn't already been said, begin or continue an exercise program and wait for guidance from the MDS.

Best wishes as you begin your PD journey.

Dianne   

Love the snowflake reference!!!

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My first neurologist went one step further and told me I would be bed-ridden in 10 years. He specialized in vascular neurology. I wasted two years with that quack!  Had him refer me to an MDS and it changed my life.

Incidentally, that was about 10 years ago. Medications served me well for about 6 years and I had unilateral DBS surgery 2 years ago. I am doing better now than when I first sought treatment.

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What the neurologist said is a generality, but statistically fairly accurate. However, as others have pointed out, this really depends on your definition of "good."

In one study, "[p]atients felt that they were too disabled to work at a mean of 3.4 years after diagnosis."  The most disabling symptom reported? Fatigue (49%).

Another study on the progression of non-motor symptoms showed that fatigue was associated "with significant life-quality worsening," and that non-motor symptoms generally have different rates of progression than motor-symptoms. I did have another study which more directly supported the "10 good years", but I can't seem to locate it at the moment. The point being, however, that there are research studies that support this idea, depending on how you define "good." For example, is being able to care for yourself and get around on your own but not being able to maintain employment "good" years, or bad?

It is possible, though, that some people are saying 10 good years because they read it in Michael J. Fox's book.  He states that his MDS told him when he was diagnosed that he would have "10 good years" - so there is another MDS stating the same thing.

Anyway, I'm not trying to be negative, just trying to present factual information. Obviously, everyone's definition of "good" will vary as well as their own individual rate of progression. I, personally, think that the "10 year" thing is generally accurate for most people.

Kevin

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Enjoying this post - I'm 7 years in and doing much better than I imagined when I was diagnosed.   I can't do half of what I used to be able to do but it's the other half that I'm pleased about.  We're all different but also alike in so many ways. 

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Depending on the individual such proclamations like "you have X amount of good time left" can become a self fulfilling prophecy.  The person starts to expect a certain rate of progression and lo and behold they get it.  Kind of a reverse placebo effect.

 

I much prefer a doctor tell me the truth, and if that is a particular limited time with good quality of life, then tell me that.  But with PD, especially at the beginning it's much better to just say that it could be a few years or decades or never before PD robs enough quality of life to call the good years over.  Everyone is different in terms of symptoms, how they progress, how much a given symptom affects their perception of severity, reactions to meds, and so on.  Maybe after your MDS has been observing you for 5+ years they'll be able to make a decent prediction for the future.

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Probably the "10 good years" is an average based on ALL PD patients. Many aren't diagnosed until age 75 or so, and are already on the decline in general. 10 good years for them would be great!

Remember, the average of 100 people age 75 who get 2 good years and 100 people 40 years old who get 20 good years is.....11! So, don't sweat the numbers. Exercise and stay positive.

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My dear husband was diagnose at age 72. We suspected something not right about two years earlier. When he went for a physical he had absolutely no problems, all vitals right on, we asked then why he had tremors, was noticing difficult in walking. Doctor basically at that time brushed it off. Two years later he was diagnosed. He passed away this January and it was two years before that his speech, had to have a wheelchair, and memory started to progress. Again all his vitals BP etc was right on. This year it rapidly started to progress, refused eating, completely shut down. New Years Day I went to see him which I went every day, he was smiling we had some drinks and 10 days later he completely shut down. He died the 28th. Cause Thrive refused to eat, and Parkinson's. Kidneys were the first to shut down. So he had a short time as he was in much pain was on morphine and died a peaceful death. Being a avid reader and learning everything I could on PD being his caretaker, it appears what I have read that PD can progress much faster than someone developing PD in Younger years. Miss him terribly but so grateful he did not suffer long.

 

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Maral:  Thanks for sharing.  I have thought of you often and remember so well how devoted you were to your dh.  May you find peace in the knowledge that he is no longer suffering.  Adrienne

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