This all came about when I read a notice in the Vancouver Sun of a man I knew who had died from asphixiation. HE HAD PARKINSONS DISEASE FOR SOME NOW ON 20 YEARS.

It brought back the memory of my grandson who had a multitude of problematic conditions including.

Chronic and acute alcololism

Aids for a period of 7 years since dx of 2 years to live at the most by my own inept personal physician

Early to medium Amyotrophic Lateral Sclerosis

Thrombollism found of small nature about 6 months previous to death

When he died after receiving no medications nor treatments at his own request his death certificate came back

Pulmonery Thrombosis

This to me said that the basis for all research has to be based on truth or it is of no value and the statistics lie.

I am a nusiance to the management of this site and I am sorry for that but when your time is short to wait for anything is the most irritating of all things.

We can't do any harm with this idea only good can come from it and if there are those who don't want to see it John and his moderators have suggested a stickey where you don't have to go if you don't want to.

Please vote in the post John put in and vote for the good it may do. No guarantees on anything but the necessity to try is not to be ignored especially when it is a matter of life and death and the quality of the life in between.

See you all soon.

Thelma

This is a question regarding the topic rather than a comment on the topic. I'm still new to all of this, so please pardon my ignorance. Two years after diagnosis, many years after symptoms began, I'm wondering this.

At the time of my pwp's diagnosis, the doctor and everyone around us assured us that this is not a life-threatening disease, but is a life-altering disease. Now I'm reading about dying from Parkinson's, and feel sad, of course, and frightened.

Is there a difference between dying from Parkinson's and dying while having Parkinson's? And the most cruel and frightening question: What does it mean to die of Parkinson's?

And while I'm here... I'm so very glad that each of you is here. Although I don't contribute often, I find this place to be a great source of comfort and help.

Leah

Well for me it is that the term Parkinson's disease is often left out of the report on anyone's death and gives to the general public the idea that the conditions it presents are not a significance in the death. Many times they are not but many times they are.

When raising funds for Parkinsons you hear over and over that the monies are not necessary for the research into a treatment or a cure for Parkinsons seeing as they died from another disease.

It's the quality of life that counts just as much as the disease that kills.

We just need to let the statistics bear on the fact that Parkinsons was there at the end and count those people as needing all of the support and research as they require.

That we can do by informing the general public of the true statistics of this disease.

Maybe this will do something and maybe it won't but I have to try.

Thank you for your response and keep posting here.

Regards Thelma

I took my dog for a walk, and saw a woman with a very active golden retriever who was having little success controlling her dog. The dog finally slipped out of his collar and began to run away. I noticed the woman limped and could not run after the dog. I called the dog, who immediately came, not because I called, but out of interest for my dog.

I held on to the retriever until her owner could approach. I switched the dogs collars as her dog had a cloth one and my dog had a choke chain. I explained that I was concerned that her dog would get hit by a car. The choke chain was a little loose, but tightened when the dog would lunge to get away.

The woman was 43 and has suffered from Juvenile Diabetes her whole life. She said she was doing very well and that her doctor told her that the possibility for a cure was very remote (this is another illness that embryonic stem cell research will supposedly cure.) She had an insulin pump installed in her and she is managing her insuline well. Juvenile Diabeties is another illness which is not considered a direct killer disease. Like Parkinson's disease, Diabetics also find the disease effects the functioning of the other organs in the body. The kidneys are overworked, the liver suffers, blood circulation may cause loss of limbs, the heart finally can no longer pump the large volume of water caused by the kidneys breaking down and the patient dies of heart failure with Juvenile Diabetes as a secondary cause.

There is little difference between living and managing Juvenile Diabeties and Idiopathic Parkinson's disease. No one can escape death. Some never have a chance to reach adulthood as my 10 year old nephew didn't when he was hit and crushed by a car while crossing a busy street. It has been 12 years and his father still grieves. Some die slowly but have some control over the way they live thier lives. They can sit and worry about the future, or they can educate themselves as to the best ways to manage their illness. There is no reason to spend time worrying about the state of your illness. Live life a day at a time and use your intelligience to decide how to manage your illness. Quality of life is yours to control. When you reach the point where you cannot control your disease, face death as every human on earth has faced it. Face it, no one is getting out of this world alive.

Is it really so important for your death certificate to say, "Cause of death: Parkinson's Disease." Is this how you define the quality of your life? I have no fear of dying. As long as I am alive, I will attempt to continue to live and find ways to help others as I helped this woman. That defines the quality of my life. Not my health.

Love,
Vicky

It is important to me and I think many others that the cause indicates the need for a cure or treatment that will without side effects improve the quality and quantity of anyones life.

The quality of our lives are that which the individual deems important and while it enables them to live life as they want it does not take precedent over how another feels. I imagine the woman with Diabetes would give much to end her suffering. The world knows much about diabetus but not so much about Parkinsons.

I have said over and over I am not afraid to die and yet as the time nears I am not as positive as I once was.

If I had Parkinsons I would be honored to have my name and my obituary put out there to do whatever it could for the cure of this disease.

I guess you and I see life on differing terms eh.

The quality and the quantity of my life are as important to me as for you and the random acts of kindness are not the quality of life to me they are to others it is just that which makes us human. I would like to say different from animals but today I wonder if this is true.

In any case if after my death I can be used for this cause I would be honored but I have Cancer and the world knows what that is, but do they know what exactly Parkinsons is.

Of course you know that while you and I are walking around many are not. Because of this they die alone and deserted by the very world they put so much into. These are the people who need that we put out this knowledge not for you and not for I but for the Fred's of this world.

So that is all this is. Knowledge for those who don't know and research dollars from accurate graphs and a gentle kind remembrance of those who went before us.

I think they would be honored to know they could help this community and the Parkinsons family even after they themselves had gone.

Now then that fact would be the answer to what the quality of their lives were and are. Me for one I am envious.

While i agree with the acknowledgment of pd actually being a "terminal" disease, i think how that is conveyed should be carefully worded. it is a debilitating condition that covers a span of many years, and people newly dxd need to know that they can life many of those years very productivly.

When I was in my early 20s, I went on a train ride from Seattle to St. Paul. Somewhere in Montana a woman boarded the train and sat down next to me. She was full of grief. I sat quietly until she softly began to speak about the passing of her husband.

The conversation was filled with sorrow, but also relief. Her husband had suffered a horrible decline in a 20+ year long battle against a degenerative disease . In the final 2 years, the family could no longer bear to see his suffering, or handle the demands that were made by the physical aspects of this disease. They decided to put him in a nursing home. The feeling of guilt stemming from the decision was evident in this womens words. But, even clearer was the bitterness left inside of her. An overwhelming sense of loss combined with frustration and complete despair came from her face as her mouth poured out the words that told of her familys struggle. I felt so much pain for this woman. I had no idea how to react, so I let her hold me as she came to terms with what had happened . The man that she had loved had wasted away in a slow, agonizing illness. And, she had to suffer so. It did not seem fair. it was parkinsons disease.

A few years later, I began having difficulty breathing. It was just a slight annoyance at first, but soon became hyperventilating. This went on for a couple of years of being diagnosed with panic attacks and put on anti anxiety drugs. Then the rigidity began. By the age of 26, I could barely move at all. I had been on many different drugs, and given diagnosis from epilepsy to stress from being a single mother. But, the rigidity scared me. I went to yet another neurologist. He decided to try me on another drug. Sinemet. Leva-dopa. It worked immediately. The diagnosis. Parkinsons Disease. I think I stopped breathing for an entire 5 minutes. all i could think of were the nightmare stories shared from that woman on the train. i was a single mom. i couldnt face putting my children through what that woman and her family went through.

i remember waiting to speak at an awareness event when a newly dxd came running out of a room full of speakers that were covering all of the stats and medical crap about what life with pd would be like. i followed her into the bathroom where she stood crying over her "death sentence". it brought back what i felt when i was diagnosed. i told her i had been livng with pd for over 20 years and my philosophy of "i have pd, pd does NOT have me". i think she needed to hear that more than anything else.

ok. let it be known.. but, please.. be gentle.