I am a high school student in an advanced anatomy class and was wondering if anyone with PD is willing to do an online interview.
If you are interested can you please confirm your name and answer the following questions here or through my email at lilazngurl790@yahoo.com as soon as possible? I would really appreciate it! Thank you.
1. What do you experience from PD that you might like to share with students studying your condition?
2. In your own words, what is it like to have PD?
3. Do you have special hobbies or special interests that you had to drop or change due to PD? If so, what are they?
4. Describe an incident dealing with your condition that really made you think about having this PD.
5. Who or what has influenced the way you have dealt with PD?
6. Has having Parkinson's disease altered the way you perceive life and people in general? Has this adjustment changed the way you view daily routines?
7. Has the medical profession been able to offer you relief, aid? how? or relatives of a person coping with pd would be fine too. =)
sorry i ran out of space to include that. =( Hello,
I have PD since 1994. I am a women 57 years old. I live in Belgium. was chiefnurse for 20 years in an internal disease and oncology department. First of all personally or neither the medical staff I worked with has diagnosed PD. I have been treated for depression and tendinitis. I worked a year with awful neck and backpain, smaller handwriting, lower concentration. Right legs didn't fonction well. Went to an university clinic in Brussels and there a neurologic specialist said to me I had Parknson. Te shock was big for me and my little family. The hardest for me was that was I must stop working. In the beginning I was depressed but after a while I said to my self "Be positif and try to help others like you used to do" . So I created No borders for Parkinsondisease, went with Parkinsonians to Germany. Is this country there are clinics specialise in Parkinson.The have a whole other approche to the disease.
My PD progress slowly but affected my live. My husband left me after 33 years of marriadge. My daughter has difficulties to accept the disease. Personally I don't accept thedisease but I have learned to live with. Live can b e beautiful even with PD
Having PD has changed my live completly : stop working-it is awfull to take all this drugs even when you are gooing out-the look of others is very hard-to be less functionnal-to be not able to move easy whe you awake-feeling of not beeing like others-thinking there will not be a treatment before you became old-look to the future is quasi impossible because the phatom of parkinson is alwas there. It 's scare me but I try to stay active and that helps me alot
I loved to visit countries, this is more difficult because difficulties to walk a long time
I loved gastronomie. Feel not good in restaurants, have the impression that eeryone looks at me. If I go I take always a table in a corner.
I loved reading, became more difficult because less concentration
I had a very good memory, now sometimes I cannot say what I did the day before.
I realised really that I had PD after severals years when I wanted to walk and I made little steps.
First of all I thought at my litlle family. For them I needed to be strong
Second I decided to stay active and help other people. Staying in a chair was not for me
I am another person since I have PD. I live day by day, don't look to the future and don't look backwards. I am less worried about little things. The real friends you have are smaller than you thinks. Only the real are staying. I don't have any daily routine because we never know when we will be in superform. So I organise my live depending of the disease.
In the beginning I didn't had a good contact with the doctor. He was God and I had to listen. Since a few years I have a realy good neurologist. He takes his time to listen, do discuss treatments and his principal quality is that he can talk with everyone : universitary-ordinary people-young and old.
I ask to the futur docters to give more and more informations to the patient and in the media. Parkinson is a disease knowed by his name but so unknowed by people. How can people understand a disease when they don't know what it is exactly. For alot of them PD is a disease of older people trembling and shaking but they don't know there are yonger ones with less symptoms . So they are consideratet as fools,alcoholics or people who takes drugs.
I hope this can help you
Friendly
Tina that would be hard typing with PD I don't have it, but my grandmother does. you wont find many people with parkinsons using the internet as parkinsons makes it nearly impossible to type or write. i suggest visiting a retirement home or community and posting flyers (in large font) asking for help with your project. I personally don't have PD but my fiancee does, so I can give you an insight on what we as a family go through.
Patrick was diagnosed about 5 years ago at the age of 35.
PD is such a frustrating disease, you have people stare at you all the time, not wanting to talk to you in case they catch it, and the tremors make it so that he does not want to be with anyone outside his family. So catching up with friends outside of the home can be difficult.
The biggest incident was watching my father go through this disease and the trouble that he had, Patrick made the desicion to not sit in a chair and waste away like his dad but to go on living the best he could. We still go camping but instead of a tent we had to buy a campervan to make it easier for him.
Patrick has been able to con the dr by having his appointments in the morning so his symptoms are not so bad, this way he doesn't have to face up to the fact that he is getting worse.
Having PD has changed his whole view on life, he went through the poor me stage when he thought that life was unfair and why him. Now he wants to try and work as much as he can so that he leaves behind enough for us to live on where in my point of view I would rather he just concentrate on him. His daily routines are now taken up with watching the clock to make sure that his medication is taken on time to stop him from falling when he is walking.
The dr that he is under is fantastic, he spends as much time that Patrick needs to discuss what is going on and what the next step will be to treating this.
I am not sure if any of this has helped but I sure hope it does.
The thing that Patrick misses the most is wood carving because of the tremors he can no longer do any of this. | 