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PERSONAL STORIES

THIS SECTION CONTAINS PERSONAL STORIES, TESTIMONIALS AND GENERAL LIFE EXEPERIENCES WITH PARKINSON'S DISEASE. WE WELCOME ANY AND ALL TO POST HERE SO LONG AS IT IS RELEVENT TO THE TOPIC. PLEASE POST ALL OTHER INFORMATION IN THE PROPER SECTIONS OF THIS FORUM. SEE MEDICAL, ADVOCACY, ENCOURAGEMENT, CAREGIVER, ETC. SOME POSTINGS MAY BE RELOCATED OR DELETED TO MAINTAIN ORDER AND CONGRUENCY OF THIS FORUM. THANKS FOR YOUR COOPERATION AND PARTICIPATION.

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Bring On the Rain

“Maybe I just need a vacation,” I thought. “NO! I just need to slow down a bit. What other reason is there for my constant fatigue?” These were the thoughts I was having throughout the year prior to when the Parkinson’s monster reared its ugly head. I was 31 years old, was an Autism Specialist, wife, and the very involved mother of a very active daughter. I did not have time for this. I had no idea that my life was about to be turned inside out and backwards.

It is one of those moments that will remain with me the rest of my life. I can smell the antiseptic smells of the doctors office, see the despair on his face, and remember the tone of his voice as he entered the examination room and said those life altering words...” I believe you have Young Onset Parkinson’s Disease.” Of course it would not be for several months, Young Onset Parkinson Disease. Little did I know at that time, that within a few short years, that monster would be renamed, Multiple Systems Atrophy. It began to rain!

Living in a small rural Tennessee town with Parkinson‘s, is like being dropped into some remote tribal village in the Amazon, with no interpreter. I saw the way people looked at me, tried to be nice, but slowly the well wishes dwindled, the calls for outings grew silent. I became reclusive. I saw that this monster not only attacks you, but those around you. My marriage fell apart, my daughter was angry. I was forced to “retire”. Now I knew how Noah felt!

In June of 2002, I received one of those forever memorable moments again. The monster changed his name to Multiple Systems Atrophy, and this time he was going to kill me! The information I was given said 7 to 10 year life expectancy. The depression and despair that hit was beyond words. I continued to withdraw from everyone and everything. I remember talking to the monster, telling him to get it over with, take me soon, I did not want to live. I was DYING!

THEN......a MIRACLE happened! Someone gave me an umbrella! In July, I received an email from Michael J. Church, a single father with Young Onset Parkinson‘s, in Florida. He has seen my postings on several PD websites and wanted to start an AOL online support group, and asked if I would help him with it. It took me a month to respond, but decided I would help.

Michael had been diagnosed with YOPD for 7 years at this point. He was a single father of 4 children and on disability. Michael was at this point working with his local Parkinson’s organization as a volunteer. He had gone through the trials & tribulations that accompanies this disease and was trying to help others come through them. But he too felt that something was missing. Where could someone who was under the age of 60 turn to for support and understanding. The many places he looked to for that support were not getting the job done in his mind. So he decided that what we needed to do was start our own online support group. That is exactly what we did.

Our group grew quickly. We connected with people all over the country and inevitably the world. People like me! All going through the same things I was going through. The only thing that was missing was meeting all these people face to face. ( I had never met another person with Parkinson‘s ). Michael and I met for first time that Fall. Along with some others from the AOL support group we came up with the idea that we ALL should get together to meet. Out of that idea came a National Conference. Although Michael and I were not a part of the end product of the Atlanta Conference hosted by NPF in 2003. That experience led us to realize we wanted more than just a conference.

One warm January night in Florida, we realized that we wanted to make a commitment to the Young Onset Community and reach out to others that were falling through the cracks of a society that was ill prepared to assist them. We KNEW there needed to be something more.....Movers & Shakers Young Onset National Support Organization was born!

Re: PERSONAL STORIES

Everybody should take the time to write their story. I did and even though it was written 2 years ago now i can still see different things in it.My achievements make me want to do more to help others.
Then i see bits whih remind me of school reports 'could do better'. it is up to ourselves to dicctate what our own ffuture will be. you are alays vin control a lot more than you think!
The Yappfarmer

Subject: MY STORY "A WEALTH OF KNOWLEDGE

Date Posted: Oct 5, 05 - 2:11 PM
Message: By The Yappfarmer
My name is Andrew Palmer and I have Parkinson's Disease which makes me a "constant service user" of The Health Service and its various practitioners, which is what created my interest in the quality and quantity of local services available and any research happening locally which I may be able to contribute to. This interest has led to my being invited to sit on the committee of "The Folk.us Management Steering Group" as a service user. Folk.us is a proactive group to help facilitate "user" led research. This is why I was asked to tell my story by Rachel Purtell the groups co-ordinator based at Exeter University.
I was diagnosed with Parkinson's Disease 13 years ago at the age of 36. The first shock was being told ,OH! I think you've got "Parkinson's Disease" as I was being shown to the door! I even paid for that privilege but that was probably better than waiting months for ban NHS appointment. What a week Wednesday say osteopath with stiff neck, he noticed I was having trouble doing up the buttons on my shirt. He wrote a letter to my GP who I saw on the Friday , he asked how quick do you want to see a specialist, I said ASAP but how much! (my mother paid because she was very worried about whatwas realy wrong with my health although I did not know this at the time) so the doctor arranged for me to see a neurologist privately the following Tuesday.
As I walked back to the car I thought well at least IT "my symptoms" has got A name, but what is IT.
As I drove home so many questions, but no answers, he said take some pills, would they work? Is there a cure? What is Parkinson's Disease? What do I do next ? Can I carry on working? loads and loads of questions, but no answers, why me that's the big question? But why not me! So I started to think to myself of what other disease's it might be and the first one being the big "C" at which point you try and think of something better like a bacardi and coke!
Over the next 6 months subconsciously I did a lot of research , I found out the pills worked well , what I could and could not do. I joined the "Parkinson's Disease Society"
And their special interest group "YAPP&Rs"[Young Alert Parkinson's Partners & Relatives]
I read all the leaflets I was sent, but the pills were working, my body was working again consequently the information got filed in the back of an old cupboard and forgotten.
So I got on with my life rebuilding the farm business as my father retired and we sold the stock when I was first diagnosed not knowing what the future held. I think the rest done me a lot of good as well.
So for the next 4 years I carried on farming with great conviction and was doing very well ,but then I found that the pills didn't work so well and I had taken on a bit to much So given some fresh pills [these were as well as not instead of which broke the '10 a day " milestone] by the doctor and off I went into cloud cuckoo land again , but I soon realised that I had tried to do too much and it was time to slow down. Of course as I wanted to get out, MAFF rules meant I had to keep going through the next winter or suffer severe financial penalties, so we carried on, and planned to sell the stock in the following May .
Then we really hit the big time BSE, [i`d rather have PD] and in a short time stock values plummeted, a wet spring, calf scours, nothing was looking at its best and a May sale looked like being a disaster worse than a mad cow with PD so I decided to postpone the sale until October another 6 months.
This was a strain on the family and ended with the break up of my marriage , my wife leaving just 2 months after going away for a weeks holiday . Also my fathers health was deteriorating , waiting for a replacement hip operation, finding it harder and harder to get about, but he had to have major heart surgery first to replace a valve.
During the summer I tried my hardest to get all the cattle looking at their best for the sale in October. The auctioneer Alan Webber from "Husseys" came and took the details of all the cattle we were selling for the catalogue, and seeing the cattle for the first time, said how well they looked. As a result Alan and his team of assistants did a very professional job of promoting the sale and to make sure the buyers came on the day. Sale day came and after a sleepless night Alan Webber arrived at 7.00am, with his fellow auctioneer Alan Venner soon after with the staff all coming at their allotted times so as to make things run like clockwork as it did.
The sale HAD to go ahead this time as I could not look after them on my own any longer. On the Sale day all the preparations paid off and to say the least, it was a great success, all the cattle looked well and sold well on the day giving us a totally unreserved clearance, a good reward for proper planning and presentation and a really creditable

WOK continued

post PD achievement which I will always be proud of.
GREAT lots of time to do what I want! Or so I thought it was going to be but dad was still in hospital and not doing very well , the past 6 months caught up with me and some days I began to wonder if I would ever feel better?
So I began to look around and in the post one morning an invitation to a South West YAPP&Rs meeting in Bristol, conductive education I think? So I replied to book a place and order my dinner. I went along not knowing what to expect, there was some scary moments, BUT these people knew what I was going through and every one talked to each other, we were all on the same wave length. It was a completely new feeling to be with other people who really understood "IT" and talked about PD openly sharing tips experiences.
I really enjoyed that day and have made life long friends with many of the people that I met that day. Back home dad was getting worse rather than better, my nephew came down from Somerset and was given the chance to run the farm , reopening the door that Parkinson's Disease shut for me, or else the farm would have to have been be sold. My father died at the end of April the end of an era. But having Mark around it meant a fresh start and enabled me to carry on living at the farm and have an interest to keep me sane after being a farmer man and boy.
So now I was on my own, the farm was looked after by my nephew , what was I going to do. By now I had been to a couple of YAPP&Rs meetings and really found them a great help, especially after all what had happened to me recently. So when a attempt was made to start a local branch of YAPP&Rs in Exeter I went along to try and help. It started as being Exeter YAPP&Rs but due to the limited numbers of people with young onset Parkinson's It was thought a better idea to change to Devon YAPP&Rs which it has been ever since to try and draw on a much larger area.. At a SW YAPP&RS meeting in Bristol sometime after that I was asked if I would like to serve on the national committee and become more involved which I gave a lot of thought and consideration and joined the committee at the next AGM in April at Rugby.
So during the next 6 months I tried to get my life together again. I was invited to attend a "Parkinson's Disease Study Day" at the NDDH where one of the speakers was the Chairman of YAPP&Rs (Mrs Emma Bennion) plus 3 consultants and a premier of the video "The Uninvited Guest" a video about young onset Parkinson's Disease. This study day was aimed at Nurses, Practice Nurses, Community nurses, physio`s, OT`s and Hospital GPs, GPRs and junior Doctors and other Health care staff. The most astonishing aspect to me that day was the lack of knowledge of professionals in dealing with PWP`s and how Parkinson's affects their daily lives. Also to realise how the symptom of PD can change so rapidly from one extreme to another and that PWPs each have their own brand of "Parkinson's". As a result of this day I was ask to appear on a Radio Devon phone in program about Parkinson's with Janet Stanley PD nurse specialist and a fellow sufferer Joe Chappell from North Devon. A very good program but as always too little time to be able to give listeners a true insight into PD.
I was gradually getting my life back together doing this and that, but found I was missing something in my life , the OTHER. I was not lonely far from it, but I was on my own. So what was I going to do about it, ah I know I jokingly thought to my self FREE ADS. We had done a few good deals through them, so I found the previous weeks edition and looked through the "female" ads and thought these sound interesting people just like me, looking for a friend, just ordinary people! Then the brave bit I selected 3 ads and wrote off telling the truth! including Parkinson's and thought that's probably the last I shall hear from them [ I included a photo as well].
One Friday night a couple of weeks later I was going to go to a local whist drive but could not summon any enthusiasm so I stayed in . Then at around 9 o clock the phone rang , I answered it to be greeted by a very nice ladies voice, we soon got into conversation about ourselves and eventually put the phone down at 1.20am in the morning. We phoned each other every day after that meeting for the first time on Christmas eve and got on like a proverbial house on fire.
After many trips over the border to see Sandy whilst she spent more and more weekends at the farm Sandy came to live with me the following July. In that April I joined the YAPP&Rs national committee and have worked to help any one I can with Parkinson's ever since regardless of age.
Since then we have been all over the country to various meetings and even been to a euro Yapmeet in Holland. We have also had holidays in Belgium and Germany [Butlins this year] . The main thing is doing what you CAN and as much as possible and not getting depressed and frustrated by trying to do things that you just ca

more WOK

I was gradually getting my life back together doing this and that, but found I was missing something in my life , the OTHER. I was not lonely far from it, but I was on my own. So what was I going to do about it, ah I know I jokingly thought to my self FREE ADS. We had done a few good deals through them, so I found the previous weeks edition and looked through the "female" ads and thought these sound interesting people just like me, looking for a friend, just ordinary people! Then the brave bit I selected 3 ads and wrote off telling the truth! including Parkinson's and thought that's probably the last I shall hear from them [ I included a photo as well].
One Friday night a couple of weeks later I was going to go to a local whist drive but could not summon any enthusiasm so I stayed in . Then at around 9 o clock the phone rang , I answered it to be greeted by a very nice ladies voice, we soon got into conversation about ourselves and eventually put the phone down at 1.20am in the morning. We phoned each other every day after that meeting for the first time on Christmas eve and got on like a proverbial house on fire.
After many trips over the border to see Sandy whilst she spent more and more weekends at the farm Sandy came to live with me the following July. In that April I joined the YAPP&Rs national committee and have worked to help any one I can with Parkinson's ever since regardless of age.
Since then we have been all over the country to various meetings and even been to a euro Yapmeet in Holland. We have also had holidays in Belgium and Germany [Butlins this year] . The main thing is doing what you CAN and as much as possible and not getting depressed and frustrated by trying to do things that you just cannot do.
Enable your self not disable yourself.
This is what created my interest in research and in coping with illness especially something like Parkinson's Disease, we need the big drug companies and the scientists for treatments and cures, but to cope we need local research so as we can link curing and caring to get the best available balance for the welfare and treatment of the patient as well AS SUPPORT for the carers to who we owe more than words can describe as they deserve some time off to, so they can recharge their batteries whilst they know that their loved ones are getting good respite care.
This can be done in many ways but I consider 2 of the main ways are through groups like Folk.us a proactive group to encourage user led research in our part of Devon, to enable local research projects focusing on the end user so that it benefits the user in a really practical and helpful way.
The other and I believe main research project every one of us should do, including healthy people is to research themselves! Are you fit and healthy or do you "suffer" from a disease or as most chronic illnesses are "syndromes".
Do you suffer from your illness or because of it, I think there is a big difference. The difference is wether you take a positive or negative attitude with regards to getting on with your life and the direction that it takes. Does it disable you or do you make it enable you to do things in life you want to do.. We all owe it to each other to take part in any research you able that will lead to better service from our local health care providers and all other service providers.
But as individuals our main concern should be "the wealth of Knowledge" that we all have buried within us, in researching ourselves, finding out what we can and cannot do, what makes us tick, what we want from life, making the best of our abilities and not the worst of our disabilities. We are the ones that know the most about ourselves, so it is up to us to use this knowledge in your journey through life. Its up to the individual wether life is in middle, slow or fast lane relatively speaking. I have always tried to be in as fast a lane as possible, I've done it all my life and d`ont see why PD should make any difference to my out look. I`ve just had to alter my expectations. [more holidays ,days off, shopping,? Playing computer games, helping people and enjoying myself.] Previously?
As you can see in my life since I have had PD, sometimes I let things happen, sometimes I have made them happen . The best results have always occurred when I made things happen, because I had thought about what I was going to do [researched the problem and how to cope] and made decisions based on the truth [reality] of the problems, not drifting along, which usually ends up with one going in a different direction to which you intended or ever wanted!
So if you cannot change it, forget it. If it can be improved try to improve it, so we can all benefit from your "WEALTH OF KNOWLEDGE"
YES THATS YOURS NOT MINE!
Email: yappfarmer@aol.com

THE END OF WOK 11/2003 to be continued

chronic illnesses are "syndromes".
Do you suffer from your illness or because of it, I think there is a big difference. The difference is wether you take a positive or negative attitude with regards to getting on with your life and the direction that it takes. Does it disable you or do you make it enable you to do things in life you want to do.. We all owe it to each other to take part in any research you able that will lead to better service from our local health care providers and all other service providers.
But as individuals our main concern should be "the wealth of Knowledge" that we all have buried within us, in researching ourselves, finding out what we can and cannot do, what makes us tick, what we want from life, making the best of our abilities and not the worst of our disabilities. We are the ones that know the most about ourselves, so it is up to us to use this knowledge in your journey through life. Its up to the individual wether life is in middle, slow or fast lane relatively speaking. I have always tried to be in as fast a lane as possible, I've done it all my life and d`ont see why PD should make any difference to my out look. I`ve just had to alter my expectations. [more holidays ,days off, shopping,? Playing computer games, helping people and enjoying myself.] Previously?
As you can see in my life since I have had PD, sometimes I let things happen, sometimes I have made them happen . The best results have always occurred when I made things happen, because I had thought about what I was going to do [researched the problem and how to cope] and made decisions based on the truth [reality] of the problems, not drifting along, which usually ends up with one going in a different direction to which you intended or ever wanted!
So if you cannot change it, forget it. If it can be improved try to improve it, so we can all benefit from your "WEALTH OF KNOWLEDGE" That is what I try to do now that I am unable to work. So this enables me to help others by my work with YAPP&Rs the Parkinson's Disease Societies special interest support group and PDS , by being invited as a service user to be member of Folk.us Management Steering group to help and facilitate "user" led research for any illness or syndrome for the benefit of the patient and carer in as many ways as possible.
By yappfarmer@aol.com
Email: yappfarmer@aol.com