My life was good.
I was part of a very supportive and loving family who have always been there for me.
Then I began to become aware that my handwriting was getting smaller, I seemed to be slowing down, I developed a limp when I was tired and I was struggling to keep going. I was exhausted
In February 2002, at the age of 46, I was diagnosed with PD.
I can remember being partly relieved because I had imagined something far worse.
My immediate reaction was that I could do something about it. Perhaps by eating the right foods, exercising, taking a pill or two the condition would improve. I began to realise that I couldn’t make things better. PD was here to stay the damage had been done
For a long time I dealt with it on my own (or so I thought). It wasn’t happening to me. I distanced myself from my family. I didn’t know another PWP. I didn’t think I needed to. As far I was concerned I was coping.
I have always found it difficult to talk to people about myself
I would happily listen to other people’s worries but I couldn’t share mine.
A friend suggested I looked on the internet to see if there was a forum
It would be up to me if I joined in.
I followed her advice and started ‘talking’ to another PWP with very similar symptoms and began to realise I wasn’t on my own there were people who understood exactly how I felt physically and mentally and I could talk to them about anything and everything.
It was like being part of a large family I began to feel more positive about the future I was in control again I was able to start planning .
Then in August 2007 I was dx with breast cancer.
Relief, fear, anger it was all there.
This time I had the support of two families.
I was able to talk about how I felt at any time of the day and night
I count myself very lucky to have become part of another family.
Jane
Saturday, 28 February 2009
Thursday, 26 February 2009
Briony's Journey
Revelation
The letter from the hospital was reassuring and told me that the results of my MRI scan were normal. I was unconcerned and went alone to see the Neurologist. After watching me walk down the corridor with no arm-swing, he told me I had Parkinson's disease. For a moment I was speechless then all I could say was "Will I go bonkers?”. He thought not. At first he made light of the condition saying that I could live a normal life –almost. But as I left he reached out, shook my hand and said he was terribly sorry because I was too young at 47. That's when I knew it was serious.
Resentment
After frantically scouring the Internet I discovered the world of Parkinson's. It was frightening and had a language of its own: Bradykinesia and cog-wheeling sounded uncomfortable, drooling, freezing and hallucinations were alarming, but the words progressive and incurable kept echoing in my head. This disease was a kill-joy that would terminate my job and stifle my enthusiasm. Many offered sympathy, others unhelpful advice such as "Be positive" or "You're lucky you haven't got cancer". Even M.J.Fox titled his book “Lucky Man”. I didn’t feel the least bit lucky, but just a loser. These early years were the worst and dominated by diminishing self confidence and anxiety. I resented the way that Parkinson’s was changing me and I was beginning to lose my identity.
Resignation
I was unprepared for the relief that medication brought and four years after diagnosis my condition and outlook improved. I had accepted the inevitable and started taking Levodopa; the change was remarkable and I began to feel revived. My limbs unlocked, my left arm swung again, I could run, swim and drive. But most important I got back my personality and began to laugh. I would accommodate this disease and I was in control again and saw a positive future ahead. These were to be my good years or “Parkinson’s honeymoon”, when PD would know its place in this arranged marriage.
Realisation
One sunny afternoon in September 2006, just after I had retired from teaching I sat in the garden, scruffy from weeding, and realised that I was free. I was responsible to no-one, I no longer had to meet targets and it was a relief to have quit the race and to move along in the slow lane. Since then I have been creative, pursuing those interests which I never had time for and making new friendships. Parkinson's has changed my life but it has not crushed by spirit. It has presented me with obstacles, but also opportunities and in the grand scheme of things, I now consider myself lucky
Briony
The letter from the hospital was reassuring and told me that the results of my MRI scan were normal. I was unconcerned and went alone to see the Neurologist. After watching me walk down the corridor with no arm-swing, he told me I had Parkinson's disease. For a moment I was speechless then all I could say was "Will I go bonkers?”. He thought not. At first he made light of the condition saying that I could live a normal life –almost. But as I left he reached out, shook my hand and said he was terribly sorry because I was too young at 47. That's when I knew it was serious.
Resentment
After frantically scouring the Internet I discovered the world of Parkinson's. It was frightening and had a language of its own: Bradykinesia and cog-wheeling sounded uncomfortable, drooling, freezing and hallucinations were alarming, but the words progressive and incurable kept echoing in my head. This disease was a kill-joy that would terminate my job and stifle my enthusiasm. Many offered sympathy, others unhelpful advice such as "Be positive" or "You're lucky you haven't got cancer". Even M.J.Fox titled his book “Lucky Man”. I didn’t feel the least bit lucky, but just a loser. These early years were the worst and dominated by diminishing self confidence and anxiety. I resented the way that Parkinson’s was changing me and I was beginning to lose my identity.
Resignation
I was unprepared for the relief that medication brought and four years after diagnosis my condition and outlook improved. I had accepted the inevitable and started taking Levodopa; the change was remarkable and I began to feel revived. My limbs unlocked, my left arm swung again, I could run, swim and drive. But most important I got back my personality and began to laugh. I would accommodate this disease and I was in control again and saw a positive future ahead. These were to be my good years or “Parkinson’s honeymoon”, when PD would know its place in this arranged marriage.
Realisation
One sunny afternoon in September 2006, just after I had retired from teaching I sat in the garden, scruffy from weeding, and realised that I was free. I was responsible to no-one, I no longer had to meet targets and it was a relief to have quit the race and to move along in the slow lane. Since then I have been creative, pursuing those interests which I never had time for and making new friendships. Parkinson's has changed my life but it has not crushed by spirit. It has presented me with obstacles, but also opportunities and in the grand scheme of things, I now consider myself lucky
Briony
Tuesday, 17 February 2009
Deb's new friends
It seems quite difficult to start this on a positive note, but what I feel most is that PD (Parkinson’s Disease) has not destroyed my life. It has made it different, and difficult, at times, but I still get a thrill out of life. I feel much more positive and alive now than I did when diagnosed in March 2003.
2003 was an awful year. In March I was diagnosed with PD, and in April I was having surgery for breast cancer, followed by chemo and radiotherapy. So 2003 was basically a write off. I became depressed, isolated myself from friends and life was very, very difficult. I went back to work in 2004, although only part time, and eventually stopped working in 2006, when I could no longer cope with it. That was another period for adjustment, and for starting to take PD medication.
What has turned my life around since diagnosis, is the friends I have made through forums on the internet. I have actually met and spent time with many of them. Some have come to stay with me, and some I have gone to stay with. Others I meet up with for days out, and some I talk to on the phone. They are incredibly valuable to me.
There is no denying the fact that there are bad days with PD, but there are also good days, and I think that happens in life generally. I know that I’d still have bad days without PD.
So, I’d like to say that I have not allowed PD to dominate my life, but I have adjusted my life to accommodate PD. I believe there is always a way of accomplishing what you’d like to achieve, even if it’s more difficult. It’s about being creative to overcome the problems, and that gives me great joy and a sense of achievement when I manage to do so.
One last thing – it’s still o.k. to blow your top when you’re having a hard time – because it’s not always a good day.
There’s a lot more to say, but I could go on for ever, so I think this is enough for now.
Deb
2003 was an awful year. In March I was diagnosed with PD, and in April I was having surgery for breast cancer, followed by chemo and radiotherapy. So 2003 was basically a write off. I became depressed, isolated myself from friends and life was very, very difficult. I went back to work in 2004, although only part time, and eventually stopped working in 2006, when I could no longer cope with it. That was another period for adjustment, and for starting to take PD medication.
What has turned my life around since diagnosis, is the friends I have made through forums on the internet. I have actually met and spent time with many of them. Some have come to stay with me, and some I have gone to stay with. Others I meet up with for days out, and some I talk to on the phone. They are incredibly valuable to me.
There is no denying the fact that there are bad days with PD, but there are also good days, and I think that happens in life generally. I know that I’d still have bad days without PD.
So, I’d like to say that I have not allowed PD to dominate my life, but I have adjusted my life to accommodate PD. I believe there is always a way of accomplishing what you’d like to achieve, even if it’s more difficult. It’s about being creative to overcome the problems, and that gives me great joy and a sense of achievement when I manage to do so.
One last thing – it’s still o.k. to blow your top when you’re having a hard time – because it’s not always a good day.
There’s a lot more to say, but I could go on for ever, so I think this is enough for now.
Deb
Monday, 16 February 2009
Chris and the Forum
I was diagnosed with Parkinson's Disease in February 2004 at the age of 51.I walked into the Consultants Room with a limp and shuffled out 30 minutes later with Parkinson's Disease. I had absolutely no idea why I had been referred to a Neurologist I had not considered any option beyond a trapped nerve. My diagnosis took only a few minutes, my case was not marginal, no scans were needed to confirm the diagnosis. My head was in a spin, my life would never be the same again. I had an incurable critical illness!
To start with I was in denial, I did not want to take the drugs and wanted absolutely nothing to do with anyone else with Parkinson's Disease. But I decided that knowledge was power and set about discovering as much as I could about this illness. I read books, researched on the internet and joined a couple of Internet Parkinson's Forums. Joining the Forums was, with hindsight, the turning point in really coming to terms with life with Parkinson's. I made friends with other PWP, shared highs and lows and coping strategies. The support I received was so unexpected and now I cannot imagine life without my them. I have also met up with many of them and been astonished how well we all got on, there was an almost instant bond.
My life has changed completely since that dreadful day in February 2004 but I still have a very good life, it's a very different life but I also have so many new friends that I would never have encountered otherwise. I started a Forum with the intent of trying to provide a place of friendship and support for people with Parkinson's Disease and I hope it will help members and visitors in the way that Forums have helped me. I am sure you will find it a very friendly and welcoming Forum."
Click on this link to see Forum Home Page:
FORUM
Chris
To start with I was in denial, I did not want to take the drugs and wanted absolutely nothing to do with anyone else with Parkinson's Disease. But I decided that knowledge was power and set about discovering as much as I could about this illness. I read books, researched on the internet and joined a couple of Internet Parkinson's Forums. Joining the Forums was, with hindsight, the turning point in really coming to terms with life with Parkinson's. I made friends with other PWP, shared highs and lows and coping strategies. The support I received was so unexpected and now I cannot imagine life without my them. I have also met up with many of them and been astonished how well we all got on, there was an almost instant bond.
My life has changed completely since that dreadful day in February 2004 but I still have a very good life, it's a very different life but I also have so many new friends that I would never have encountered otherwise. I started a Forum with the intent of trying to provide a place of friendship and support for people with Parkinson's Disease and I hope it will help members and visitors in the way that Forums have helped me. I am sure you will find it a very friendly and welcoming Forum."
Click on this link to see Forum Home Page:
FORUM
Chris
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