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

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

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