[Debi Brooks]

Michael Kinsley's frank & funny piece on Parkinsons & cognitive decline in the current issue of The New Yorker magazine is worth reading ... albeit admittedly sober, I admire his narrative on this sensitive subject.

Our blog features some highlights ... https://www.michaeljfox.org/foundati...ement-disorder

Or, download from New Yorker site if you are a subscriber ...
http://www.newyorker.com/reporting/2...a_fact_kinsley


Debi

[ol'cs]

Originally Posted by Debi Brooks

Michael Kinsley's frank & funny piece on Parkinsons & cognitive decline in the current issue of The New Yorker magazine is worth reading ... albeit admittedly sober, I admire his narrative on this sensitive subject.

Our blog features some highlights ... https://www.michaeljfox.org/foundati...ement-disorder

Or, download from New Yorker site if you are a subscriber ...
http://www.newyorker.com/reporting/2...a_fact_kinsley


Debi

in my experience the worst thing about YOPD is that you think that you are going to die soon, you get paranoid about it, and it causes you to act irrationally. But you don't die, you think you are, but you have many years ahead of you. So just make the best of your early years. cs

[pegleg]

There's a long-running joke, but I have never found any humor in it.
it goes like this:

"The GOOD news is that you don't die from Parkinson's.
The BAD new is that you don't die from Parkinson's."

"Parkinson's" is not often written on death certificates, unless it says "Cause of death: Complications from Parkinson's." Such complications include injury from a fall, renal (kidney) failure, choking, pneumonia, and any of a number of vital functions that would probably have not occurred had you not had the disease.

I have lived with this monster for 20 years. Now, I could be said to have a positive attitude about having PD, but there have been times along my journey that I have "wished" I would just die. That is not me talking, but rather it could be the depression brought on from mixing and messing with the chemicals in my brain causing an imbalance. Knowing that PD has caused this deadly attitude, I try to focus on that very fact. If we give up hope, we may fall into a deep hole that we are unable to climb out.

The medications I take aren't like an antibiotic for Strep throat. There is no germ that has invaded my body to "kill". The meds also are not like a diuretic to rid my body of escessive fluid. If PD is caused by an excessive substance in my body, we do not know about it. The fact is, we do not know why we start losing neurons. Nor do we know what to do aboout the fact that our brain stops producing dopamine - the chemical medium for creating an environment conducive to allowing signals from the brain be able to "jump" from synapse to synapse in split second timing.

I liked the article mentioned here because it has been the catalyst of my involvement in advocacy. And as Kinsley pointed out, you get paranoid knowing that more than half of those who are diagnosed with PD will get dementia. That is what I fear most. It bothers me somewhat that there may come a time when someone has to help me "go potty," but it bothers me a lot that there may come a time when I do not know the purpose of a potty.

I already knew that Hitler was thought to have had PD. And there are times, I'm sure, that I have a tendency to go off half-cocked like Hitler. But generally, I am a sensitive, be-kind-to-others type person. I would not like to be restrained with handcuffs and shackles due to aggressive behavior, but I would hate it even worse to not know that I was harming someone.

As we age, the retrieval process of the mind gets more sluggish in general, but keeping those circuits open and active (in my opinion and according to some research) surely must impact that speed of recalling your friend's phone number. And although I lose items (like I lost my iPhone just prior to attending Unity Walk in NYC this past weekend), I have never been unable to distinguish where I am, or WHO I am.

I do not like having Parkinson's, but there are far worse situations. I am convinced that based on the individual cocktail of meds prescribed to help our limbs move fluidly, it can dull our senses or slow our comprehension. And it definitely plays havoc with our mood swings. But I know that willfully harming ourselves to escape our situation should not even be on the list of possibilities. However, based on how I feel today and knowing how caregivers interact with one who has dementia or Alzheimer's, I might have written in my last will and testament that if I ever do not know who or what I am, to hang a sign around my neck that says, "Please do not feed me."

[gaykir]

Peg, you touched on a little discussed topic...that being, the cause of death on death certificates. All kinds of research etc is based on death cents. When Kevin died, I was insistent that Parkinson's was listed as the cause. Not complications from but Parkinson's itself. It seems like a silly little detail but the long term benefit to patients in the future makes it so much more important. I hope others follow suite. You can have an impact on what is put on the death certificate...especially if you are using hospice!

Thanks for bringing it up!

[pegleg]

Gayle
You are so right about insisting a cause of death include the main culprit; , i.e. "Parkinson's" be put on death certificates. It should be coded and accounted for the same reason as diagnoses are done.

I remember when I worked for the local Veterans Administration hospital . I worked as a medical transcriptionist. There was a position for one person to file charts, and one for coding diagnoses and other duties. But there was one position only for a specific disease or illness, and that one person had to handle and review every chart that gave either an admitting or discharge diagnosis of "cancer."

You see, it is the law that cancer must maintain a registry. Every chart that indicates that a patient might or has confirmed the patient as having cancer must code that chart a special way so that such information can be retrieved when needed. This info might. Include the patient's name, where they live, gender, age, and primary site of the cancer. Think of how important such demographic and personal information might be in studying me about cancer.

WE NEED A LAW FOR A SIMILAR REGISTRY FOR PARKINSON's DISEASE!

As it now stands there is no registry, which would be invaluable in seeking to name biomarkers, to indicate geographic locations where Parkinson's is more prevalent, or many other leads to finding answers about this mysterious disease.

We attempted to get a registry through a bill that would have counted PD and MS (multiple Sclerosis) in a similar way. However, it got lost in the political bureaucracy game and we are still trying to get a PD bill to build a database that will lead us to better therapies, and maybe even a cure.

There are some states that have started their own state registry. Check with your representative of PAN (Parkinson's Action Network) the Washington-based organization that speaks as the unified voice of people with Parkinson's and their caregivers to see how you can help.

[violet green]

Via your local public library. Most libraries subscribe to the New Yorker -- I went to mine today to copy the full text. Now just to make time to read it.

Katherine