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Welcome at Hans van der Genugten's homepage about
    Parkinson's Disease    

The english pages are still under construction. Therefor some parts may not work correctly.



Index:
     
  Juli 16:   "A random day in the life of a 50 years old Parkinsonian"  
  April 11:   World Parkinson's Day  
      Special events  
      Well known people with Parkinson's Disease  
      Links to other homepages about PD  
         


This is a story of Anneke, a 50 year old female, about Parkinson's Disease. She has got this disease about 9 years and still has problems with accepting. Anneke tells about a morning in her life: to start with waking up with pain and ending with canceling her appointment with the hairdresser, because she is too exhausted, again.


 
 
  "A random day in the life of a 50 years old Parkinsonian"

I wake up, much too early in the morning. I turn around on my other side. It is a difficult thing to do. And that terrible pain in my back, help, that hurts! I try to stay in bed as long as possible. The later I take the pills the better. Maybe I will feel better in the evening then!

It is half past eight now, time to get up, I can't wait any longer. Get dressed, the shower can wait. Ouch! While trying to put on my socks, it looks like my feet are too far away!

Go downstairs and start the first job of every day: washing the dishes. It is quite easy, I don't walk too bad and can stand rather stabile. Oh I wish I could stay  this "good" all day!!! Then emptying the dustbins, watering the plants, cleaning the living room a bit, it is still all right. Coffee-break.

Let me take my medicine now, before I mix up the pill schedule for the rest of the day. I wonder how this day will be. As a matter of fact, I am getting tired already.
Yesterday I made an appointment with my hairdresser: this morning at half past ten. My hair needs a cutting very urgently, it almost covers my eyes!

First I will have my second cup of coffee, while looking at "All in the family". And then, when I try to stand up straight, I notice my right leg is making trouble again. It makes lots of unwelcome movements and I have to make efforts not to lose my balance.

Lets wait for a while and lay down on the couch, relaxed. Relaxed????? No way! And now my face begins to make "funny" movements. I have to wait and rest a bit longer and watch a soap on the telly.

I feel terrible about myself because there is so much to do in the house…But, well, I can't help it. This means Mister Parkinson makes me helpless.. I DON'T allow him to! I WANT to stay in charge of my life!!

It is a quarter to ten by now. I have to take a shower and wash my hair. But at this moment I don't feel like it, of course. I have got some adjustments in the house like handles and a shower-chair to make things easier. But yet it is a "hell of a job". So I have to cancel the appointment with the hairdresser. What a wonderful feeling to be totally free! But not for real!!!!!


If you want to respond to this story, you can send an e-mail to
Anneke Fongers

 

               
        World Parkinson's Day 1999        
                 

         
    Worldwide press release Parkinson Information Exchange Network    
         
    Press release Dutch Parkinson's Association    
         
    Prayer by Archbishop Desmond M. Tutu    
         
         

       
    Press release Parkinson Information Exchange Network    
         
    ***TUTU TO HELP PARKINSON'S DISEASE SUFFERERS***

South Africa's Desmond M. Tutu, Archbishop Emeritus and Nobel Peace Laureate, Robert W. Woodruff Visiting Professor of Theology, Emory University, Atlanta, Georgia, USA has offered to issue a prayer for all those worldwide who are suffering from Parkinson's Disease to mark World Parkinson's Awareness Month in April.

The Archbishop offered to write a prayer for the occasion following a telephone conversation and a long emailed letter from Ivan Suzman, Portland, Maine,  who has advanced Young Onset Parkinson's. Suzman, a disabled anthropologist, (and formerly a leading anti-apartheid activist) has become a Parkinson's activist and a member of the Parkinson Information Exchange Network (PIEN), an internet discussion list, notified members of the list of the Archbishop's willingness to "do something for those suffering from Parkinson's".

Later, Tutu's office notified the listowner, Barbara Patterson, another "Young Onset" Parkinsonian and a secretary at McMaster University School of Nursing, Hamilton, Ontario, Canada, that the Archbishop had decided that his prayer will be issued through PIEN. Patterson's internet list has more than 1,800 subscribers in 36 countries.

Parkinson's Disease (PD) is a chronic, slowly progressive neurological condition that affects a small area of cells in the mid brain known as the substantia nigra. Gradual degeneration of these cells causes a reduction in a vital chemical known as "dopamine". This decrease in dopamine can produce one or more of the classic signs of Parkinson's Disease.

Although an estimated 15% of patients are diagnosed before age 50, PD is generally considered a disease which targets older adults. Parkinson's Disease affects up to 10%, in some populations, of those persons over the age of 60. To date, there is no known prevention or cure for Parkinson's Disease.

Notable persons with the disease include Pope John Paul II, Muhammad Ali, American Attorney General, Janet Reno, Gandhi photographer Margaret Bourke-White and actor Michael J. Fox.

   
         

       
    Press release Dutch Parkinson's Association    
         
    Special action for World Parkinson's Day

Archbishop Tutu prays for people with Parkinson's Disease

Bunnik; April 7th,1999

Archbishop Desmond M. Tutu from South-Africa will issue a prayer to mark World Parkinson's Day, Sunday April 11th, especially for all people that worldwide suffer from Parkinson's Disease (PD). All churches and other religious institutions are requested to follow his example.

The Archbishop's prayer will be spread around the world by the Parkinson Information Exchange Network, a worldwide internet discussion list, to the members in more than 36 countries. In the Netherlands the prayer will be spread around by the Dutch Parkinson's Association and Nederpark, the discussion list for Dutch people with PD. The religious institutions in the Netherlands are invited to join Tutu in giving support to the worldwide Parkinson's community.

The international organisations for people with PD have proclaimed April 11th as World Parkinson's Day. On this day all around the world we ask to pay special attention to the people with PD. This date is choosen because it is the birthday of James Parkinson, the English physician, who in 1817 was the first to describe the symptoms of the disease that later was called PD.

On World Parkinson's Day the organisations for people with PD are trying to raise awareness for the problems of people with PD, in the government as well as the general public. More and more the general public is confronted with people that have a tremor or difficulty with walking or speech, judged by their appearence.

PD is a chronic, slowly progressive neurological condition that affects a small area of cells in the mid brain. These cells produce the neurotransmitter "dopamine", responsable for the transmission of signals from one braincel to the other. Degeneration of these cells causes a decrease in the production of dopamine, resulting in the symptoms of PD.

The most common symptoms are: tremor, stiffness and slowness of movement. PD affects men as well as women, usually when they are about 50 years old. However, about 10% is younger than 40. Estimated is that at this moment in the Netherlands 43.000 people have PD. One in every 350 Dutch inhabitants. And their number is increasing.

   
         

       
    Prayer by Archbishop Desmond M. Tutu    
         
         
   

Parkinson’s Disease World Awareness Day Prayer

O God You are the source of all goodness,
life, light, and health and knowledge.

We thank You for all that You have given us so lavishly:
food, shelter, life, love. 

We thank You for those who have loved and cared for us:
our fathers and mothers, our sisters and brothers,
our relatives and friends.

Others lack all of these things.

We come before You as your children who are suffering from
Parkinson’s Disease. 

The world is not always as aware of us as we would want. 
We thank You for those striving to make us more visible. 

We, too, are human persons with feelings and emotions.

We are thankful for those who have passed laws that seek to make
Parkinson’s Disease a national and indeed an international issue.
We want the world to know that we exist. 

We are here. We are not shadows. We are not misfits. 
We are human beings with a certain affliction. 

We pray that there will be greater awareness of our plight. 

We pray that our governments will make adequate funds available
for research to discover a cure for Parkinson’s Disease. 
We are on the verge of a breakthrough. 

We pray for those who compassionately look after us
and those searching for a cure. 

Bless their efforts and crown them with wonderful success.

Bless us all.

Pour forth your Holy Spirit on us all abundantly
now and always.

Amen.



Desmond M. Tutu
Archbishop Emeritus of Cape Town, South Africa
Nobel Peace Laureate

   
         

 
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If you have questions or suggestions, you can send an e-mail to
Hans van der Genugten

 
 
  Or contact me on ICQ # 30084563. At the moment I am

     


Disclaimer:

All data at this homepage about Parkinson's Disease are only to be used as general information. The information given here is not sufficient enough to change your treatment or medication by yourself. Only a physician has the knowledge and expertise to make adequate changes and adjustments. If you think, after reading the information at this homepage, that a change in your treatment or medication might be appropriate, always contact your physician first before making any changes.

 

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  Last update: 04/03/00 ; Copyright Hans van der Genugten