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Topic Two friends dx with PD this week Go to previous topic Go to next topic Go to higher level

By makrivah On 2014.09.02 20:56
Hard to believe that two friends called this week with news that they have Parkinson's. So sad. Coincidence or trend for 65+ folks?

By jcoff012 On 2014.09.03 00:54
In my opinion, it is our aging population, coupled with better reporting of symptoms and problems. Remember when the media used to say soon those in their retirement age groups would outnumber younger workers? Well, the time is here...We are the majority...

As for coincidence, not sure...could be...could be just a sad reality that we are aging into these chronic illnesses. Jane Sorry about your friends.

By LOHENGR1N On 2014.09.03 08:40
I don't like the term chronic illness to me it seems to trivialize P.D. but that's just in my opinion. :p

By ResistanceFutil On 2014.09.03 08:52
Two of my husband's high school friends were also dx'd prior to my husband's dx. One of the students is Linda Rondstat. All three attended Catalina High, Tuscon AZ in the 60's. Makes me think of environmental factors as well.

By jcoff012 On 2014.09.03 16:13
Al, PD is a chronic illness, and you know I mean no disrespect or to lessen anyone's PD journey. What word would you have used? Hugs, Jane

By Mary556 On 2014.09.03 16:43
chronic, progressive?

By ResistanceFutil On 2014.09.03 17:47
Neurodegenerative is a good description. Chronic illness to me is more like diabetes or high blood pressure - not good but not as devastating in the way PD or Alzheimer's is.

By LOHENGR1N On 2014.09.03 18:09
Terminal or Neurolodegenerative terminal. Because to just term it chronic many people respond with the likes of well at least it isn't something like cancer. The truth needs to be out there .

By jcoff012 On 2014.09.03 18:39
I suppose when I wrote my post, I had a different meaning of "chronic". To me, if a disease is chronic it is a long-lasting one that can be managed, but not cured. I can see why anyone who has fought the fight for PD clarification and funding would not like that simplistic description, but I never trivialize PD.

Perhaps we need a better way of describing PD, but if we want the general public to respond favorably when speaking of PD, we need a simpler, easier to understand term...I cannot imagine telling the average person that PD is neurolodegenerative...and having them understand! Again, not making light AT ALL...

In this case, shoot the messenger, but understand the message...use whatever terminology that fits...but, in my opinion, we really do need something simpler...Hugs, Jane

By LOHENGR1N On 2014.09.04 08:35
Why not neurodegeneritive would spark explanation not leave an impression of a nagging cough. Manageable? I would beg to differ as would any, they try to lessen symptoms while the disease continues it's insidious journey through our brain disrupting it's functioning. I'm sorry but to say P.D. is a chronic, manageable condition or disease does in public opinion lessen and trivialize it and us.

By lurkingforacure On 2014.09.04 08:46
I tell people it's neurodegenerative and terminal. I wish I didn't have to do that, but it's the truth. In Europe PD is universally recognized as terminal and they call it such. Why we try to tiptoe around the ugly truth here in the US is beyond me. It hurts everyone to do so.

Having said that, I can tell you that people do NOT want to hear it and the reactions I get are not comforting. Most people do not want to know PD is this terminal neurodegenerative condition:they don't want to be called on to help, and they don't want to think if they get it (likely at some point, we all age), they will have a "terminal" condition too.

Life is terminal!

By carman96 On 2014.09.04 08:51
In my caretaker for chronic illness group yesterday, the therapist describes chronic illness as something that lasts a long time but death is not imminent. When death is imminent, then it becomes acute. The people in the group are caretakers for people with Alzheimer's, severe strokes, dementia, and another neurodegenerative disease. These people we care for are unable to care for themselves. There is nothing trivial about any of it. Yes, it's lumped in with other diseases that aren't as severe, but I don't care how they label it. Just glad someone is trying to help.

By mylove On 2014.09.04 09:23
For some of us, just getting through the whole ride in one piece is hard enough. I'm not going to be called on to educate the world or quibble about terminology. There are others whose job it us to 'bring awareness'. For us, it's enough that friends and family know what it us and how to help. I suspect that might be the case for other families, too.

There are some people who react to a diagnosis of an illness with the motivation for a great crusade. I'm thankful for them, because it means I can keep the focus on what I personally find important - my love and his health and comfort. I would say that I wish that were me that was called to education and outreach, but honestly - that's not me, so I do what I can and leave that piece to those who are called to it.

Three things I wish we remembered in here more often: We are not adversaries in this journey. Each of us has their own calling, and all feelings/experiences/emotions/opinions are equally valid. And we all understand the common language of our disease. In here, of all places, we should all be allowed the freedom for verbal shorthand and total honesty. We understand what someone is talking about when they say sinemet, seniment, senmet, or sintemet, and don't challenge their misspelling. This IS a chronic disease, by definition, and one that saps everyone involved. With all due respect, let's keep our battles for the big stuff.

By Freespirit On 2014.09.04 11:06
Our doc once referred to PD as "The Tin Man's Disease."
This was very early on in my husband's journey. I didn't quite understand it then, but I sure do now.

By jcoff012 On 2014.09.04 12:51
Back to the original post, it DOES seem as if there is more awareness and more dx of Parkinson's...I know that when his Mom was dx over 22 years ago, they told the family that PD is NOT an inherited disease...Well, here we are, 25 years later, and Carl has, it has become "the elephant in the room"...who is next of the six brothers and sisters>or, our three remaining children, or our two grandchildren? Or, will it not be inherited, but rather a disease of circumstance...environment, one knows as of yet...Research needs to be paramount.

When my brother died of Hodgkins 50 years ago, it was a disease that took the lives of 94 percent of those who contracted it; today, 95 percent of those dx are cancer free after the five year mark, and most are fine years later...

Knowing that, I can only hope that is true for Parkinson' we no longer have to hear of any more friends with the dx. Jane

By carman96 On 2014.09.06 02:23
Well said, mylove. I agree completely.

By LOHENGR1N On 2014.09.06 23:56
I'm sorry, maybe I'm being overly sensitive here? At times my answers or feelings are not accepted or validated. All others can be but let me say I think to me a term seems to lessen the disease and it's gang up time. Now I know this isn't going to go down well but ....well I feel it needs to be said. Many caregivers stick to the end and do a very commendable job and you're all great and please believe me when I say I have your backs. Let no one dare say different. However after we pass the care giving ends and not many stay to advocate. Who can blame you? After years of caregiving the last thing most want is to still deal with Parkinson's. And that is why pwp try to advocate for a cure because we have a limited time to do it. A short decade or two to push for a cure so our families
and children and grandchildren aren't in the
same place we are right now with the same
options we have but they have a cure or better
treatment. If some of us seem overzealous it is
because we see we have a limited window to
help those who will follow down this path and
some one has to do it. But to say life is terminal
Yes it is however throughout lifes travel the end is unseen for the most part and cause
unknown unlike with this disease. Okay my
rant is done.

By lurkingforacure On 2014.09.07 05:52
Well I've deleted my prior post.I come here for support and never intend my posts to cause tension and am sorry if they do.

By carman96 On 2014.09.07 10:27
I wish that people here didn't have to feel that they have to delete posts. No one ever says anything bad about other people on the forum.
We are all entitled to express our own feelings and no one should take it personally. We are all fighting the same disease, not each other.

By jcoff012 On 2014.09.07 23:41
Al, and others, we sometimes see frayed nerves and lack of sleep in our interpretation of posts. Let's leave it at that, ok? We are a family here and sometimes we misunderstand each other, but we all want a cure, to find a cause and to have PWP live longer and healthier lives...we ALL do!

On that note, Carl had yet another bad night...In fact, when I woke up this morning, he was downstairs and snoring, lying on the floor...this is breaking my heart. He keeps saying he just has a case of insomnia for a few days...I say it is stress from having to be around Nigel's friends at his fifth birthday party this coming Saturday, and following that a trip to Disneyland and Legoland starting Sunday...for a week...couple that with seeing and spending time with our oldest daughter who as many know has been less than compassionate...

Whatever it is, I am hoping a quiet day like today will help him sleep...It was over 2 AM again for me, too...A habit I do not want to keep up!

Hugs and everyone remember why we are support each other, not to disagree over semantics...Jane

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