Hi I am a new member. I became member of the Parkinsons Club 7yr ago, but others had noticed little things earlier but had not said anything. A year prior to diagnosis I had just started teaching, and was still new, keen and enthusiatic. One of my student would often ask if I had a big weekend, not being a drinker, it took me a long time to realise he must have seen my tremours.
I also started to learn to horse ride, I was told it takes 100 falls to make a good rider, I was going to be fantastic at the rate I was having unplanned dismounts. I went to GP who referred me to neurologist with maybe a touch of Parkinson's. In the intervening 4 weeks I was riding my wifes horse and came off at a canter onto a rock wall, breaking my arm.
The neuro suggested i dont ride anymore, I didn't listen to that bit, and with the aid of some good drugs, I have come of my horse less in the last 7 yr than that year before diagnosis, I certainly have not gone any slower riding, in fact I am jumping. The neuro said riding was good exercise, but didn't like the jumping.
I will never look elegant riding, but it has given me a lot of pleasure through some very difficult years. My horse Zac is a very naughty boy when I am on the ground, he has bitten me and many others and he can be just plain difficult, pulling back etc. But when I am riding he looks after me, like when I slip to the left he will often bounce me back to the center of the saddle. If I m not sitting correct coming t a jump he will just slow to a walk and not go over.But for an old Appy he has a turn of speed and has been clocked by GPS doing 44 kmh.
As with many of the men with early onset Parkinson's my wife left me, but after a couple of years she has become a good friend. I have remarried a lovely lady from Thailand.
I finnished teaching a year ago, teaching electronics became very difficult, fine soldering and everything had to be typed, which was taking me forever, plus by te afternoon I was so tired I felt like I was a zombie, finding it hard to lift one foot in front of another.
I am still involved on the board of DattaVic, Design and Technology Teachers Assoc. And provide some professional development. I also tinker about my house, it just takes lot longer these days.
I live in Geelong, Victoria,Australia
Smurf
Sunday, 22 March 2009
Saturday, 21 March 2009
Diagnosis Day or "D-Day" by Carol
I remember the day of my diagnosis, Tuesday 29 January 2008, like you would remember other significant days in your life such as your wedding day and the birth of your children. I’d always had restless legs which is quite common but for at least 6 months (I cant remember exactly how long) I had a ‘fidgety’ left leg. I’d finally gone to the Drs who prescribed some medication which he said was sometimes used for people with Parkinson’s. Perhaps being naive I did not think anything more of that comment, after all only old people get Parkinson’s! How wrong I was. After a couple of months on the meds, there was no improvement so he referred me to a neurologist and again I thought nothing of this, thinking he’ll say it’s a trapped nerve, stress or nothing in particular. So off I trotted to the hospital after work thinking this is a waste of time. Well within 10 minutes of being in the room and the consultant asking me a couple of questions and doing a few movements, he said “Well I’m afraid it’s bad news, you have Parkinson’s”. From then on it felt surreal, as if I wasn’t in the room and this was something happening to someone else. I broke down in tears and asked the usual questions “Will I be in a wheelchair?”, “Will I have to give up work?” (not that work is that important to me!), etc . He just continued to talk whilst I cried. I just couldn’t get out of the room quick enough, in all I must have been there less than 15 minutes and my whole world had been turned upside down.
From then on I kept asking why me, this shouldn’t be happening to me, it happens to other people. I remember being out in public and looking at complete strangers and thinking have they got it or why haven’t they got it, particularly if they looked unhealthy, were overweight or smoked. Not very nice I know. But all these and other spiteful thoughts ran through my head.
Well the last year has been different to say the least and I think I am getting on with my life the best way I can and I have stopped crying at the mention of Parkinson’s. The positives of having Parkinson’s is I hope I have more understanding and empathy for people with disabilities and chronic conditions like I would like them to have for me. It makes you realise what is important and what isn’t and to not put things off what you want to do and do them now! I’ve also met and talked to some lovely PWP on forums and the support I’ve received has literally been a life saver and I hope I can always help and support them. I don’t know what the future holds and in 5/10 years time when I read this I may feel differently, who knows, so I’ll try to live for today.
Carol, always trying to keep smiling and laughing .
From then on I kept asking why me, this shouldn’t be happening to me, it happens to other people. I remember being out in public and looking at complete strangers and thinking have they got it or why haven’t they got it, particularly if they looked unhealthy, were overweight or smoked. Not very nice I know. But all these and other spiteful thoughts ran through my head.
Well the last year has been different to say the least and I think I am getting on with my life the best way I can and I have stopped crying at the mention of Parkinson’s. The positives of having Parkinson’s is I hope I have more understanding and empathy for people with disabilities and chronic conditions like I would like them to have for me. It makes you realise what is important and what isn’t and to not put things off what you want to do and do them now! I’ve also met and talked to some lovely PWP on forums and the support I’ve received has literally been a life saver and I hope I can always help and support them. I don’t know what the future holds and in 5/10 years time when I read this I may feel differently, who knows, so I’ll try to live for today.
Carol, always trying to keep smiling and laughing .
Monday, 9 March 2009
Trish's Diagnosis
The first time I began to worry about what was wrong with me, was when my husband and daughter were walking behind me on a day out with family in July 07, and teased me about the way I walked… ‘Your left arm’s not moving mum’ said my daughter, ‘and you seem to be limping’.
I had been worrying about my slowness, my lack of co ordination, and my shaky left hand for a while. The doctor had put things down to the menopause, but deep inside I knew it was more than that. So once more I took myself to my GP, and this time told him about my lack of arm swing and the tremor. A different look appeared on his face as he said he would refer me to a neurologist.
The appointment came, and clashed with Richard being abroad with work. ‘Not to worry’ I said, ‘I’m sure I won’t be diagnosed straight away, there will be tests I expect’.
How wrong I was…
I went alone to my appointment. The neuro did some tests on me, and before I knew what was going on, he sat me down and gave me the diagnosis…’’ You have Parkinson’s ‘’ he said, looking me straight in the eye. ‘’Here is the PDS website, and do you want to know anything else? I will send a letter to your Gp, and see you again in 4 months, when we will discuss starting you on medication.
‘Thank you’’ I said..
He looked at me and said ‘ I don’t think you really mean that do you?’
As I walked home I felt numb.. I knew nothing about PD.. what should I expect for the future? Would I still be able to work? Or Drive?
How would I tell the family? I felt the tears come, as I walked through my front door.
I felt so alone and frightened. How could I have Parkinson’s? Surely I was too young I told myself as I sobbed.
Telling Richard on the phone was awful… we both cried, and he felt bad not being with me when I needed him.
Its hard to believe this was almost 2 years ago, and things have not been anywhere near as scary as I thought they would be.. I am now on Requip XL, which helps a lot, and am still working on maternity 3 days a week, and still driving.
Yes I get tired, find it a struggle to get ready for work on time, things take me longer to do, I get help with the ironing… but life is still good… and the friends I have made by joining the forums have helped me enormously to come to terms with having this horrid illness. To talk to others who understand what I am going through has made a traumatic time bearable.
My family have been wonderful, and the love and support they give me every day is invaluable and much appreciated. My mum gets upset sometimes and says it should be her not me, but I reassure her that things are not so bad.
Yes I have PD, but I’m still enjoying life!
Trish
Still smiling
I had been worrying about my slowness, my lack of co ordination, and my shaky left hand for a while. The doctor had put things down to the menopause, but deep inside I knew it was more than that. So once more I took myself to my GP, and this time told him about my lack of arm swing and the tremor. A different look appeared on his face as he said he would refer me to a neurologist.
The appointment came, and clashed with Richard being abroad with work. ‘Not to worry’ I said, ‘I’m sure I won’t be diagnosed straight away, there will be tests I expect’.
How wrong I was…
I went alone to my appointment. The neuro did some tests on me, and before I knew what was going on, he sat me down and gave me the diagnosis…’’ You have Parkinson’s ‘’ he said, looking me straight in the eye. ‘’Here is the PDS website, and do you want to know anything else? I will send a letter to your Gp, and see you again in 4 months, when we will discuss starting you on medication.
‘Thank you’’ I said..
He looked at me and said ‘ I don’t think you really mean that do you?’
As I walked home I felt numb.. I knew nothing about PD.. what should I expect for the future? Would I still be able to work? Or Drive?
How would I tell the family? I felt the tears come, as I walked through my front door.
I felt so alone and frightened. How could I have Parkinson’s? Surely I was too young I told myself as I sobbed.
Telling Richard on the phone was awful… we both cried, and he felt bad not being with me when I needed him.
Its hard to believe this was almost 2 years ago, and things have not been anywhere near as scary as I thought they would be.. I am now on Requip XL, which helps a lot, and am still working on maternity 3 days a week, and still driving.
Yes I get tired, find it a struggle to get ready for work on time, things take me longer to do, I get help with the ironing… but life is still good… and the friends I have made by joining the forums have helped me enormously to come to terms with having this horrid illness. To talk to others who understand what I am going through has made a traumatic time bearable.
My family have been wonderful, and the love and support they give me every day is invaluable and much appreciated. My mum gets upset sometimes and says it should be her not me, but I reassure her that things are not so bad.
Yes I have PD, but I’m still enjoying life!
Trish
Still smiling
Sunday, 1 March 2009
Keep Smiling by Charmaine
hi
it was the year 1998 when i noticed my right arm was swollen, i was 36. went to gp couldn't find an explanation told me lose some weight it may help. this went on for about two years or more, then we took my son back to portsmouth in the year 2000, when we had a horrific crash on the motorway car was a right off but we all survived me having the worst a bit of whip lash and bruising, after that things settled but i did notice my little finger started to twitch right side again. this went on for years, went back and for gp but nothing.2003 we lost our grandaughter, so things were awful in our house trying to come to terms with that as well as these symptoms i was getting,by 2004 i was becoming a nightmare to live with, never really noticed at the time but i iwas moody,nasty, i was struggling to get through the day but because the gp said he could find nothing well you just get on with it.gary had a massive heart attack so i had to deal with that as well, i had to be strong for him and the children, 2005 i went back to gp, this time he sent me to the hospital, so i went to see this 2nd in command he said he thought it was benign essential tremor, me being green thought ok, went to work carried on but struggling to work and shop for a family of five, i was exhausted and becoming nasty.apparently i had no facial features i was mask like but my family never told me..i would look striaght through them if they were talking to me.this one particular day i decided to have my tarot cards read and she told me to get a second opinion at the hospital so i did i had an appointment through on 4th august 2006 at 10.30am walked in he said you have pd no oquestion about it, through tears the only thing i could say was is it hereditary he said no.i came over all relieved, but i had not heard of pd so did not know what to expect,the nurses were marvellous they knew my sis was working that day on eye clinic so they took me to see her we had a hug and i couldn't stop crying. from that moment on i knew i had two choices i could either give up or fight,(which was not really an option i had to be strong gor my children) so i went on the internet trying to find any thing i could about pd and how to deal with it.my dad doesn't think any thing is wrong with me, he's a classic bury your head in the sand type of guy.i couldn't let my kids see me give up i had to fight for them to be as strong as i can, even now when my kids are with me 26,25,19 i put on a act. it's wrong i know but that's me. the one thing i don't like is people who hardly now me ask how are you, would they ask if nothing is wrong with you, people treat you differently.
hope this isn't too long charmaine
it was the year 1998 when i noticed my right arm was swollen, i was 36. went to gp couldn't find an explanation told me lose some weight it may help. this went on for about two years or more, then we took my son back to portsmouth in the year 2000, when we had a horrific crash on the motorway car was a right off but we all survived me having the worst a bit of whip lash and bruising, after that things settled but i did notice my little finger started to twitch right side again. this went on for years, went back and for gp but nothing.2003 we lost our grandaughter, so things were awful in our house trying to come to terms with that as well as these symptoms i was getting,by 2004 i was becoming a nightmare to live with, never really noticed at the time but i iwas moody,nasty, i was struggling to get through the day but because the gp said he could find nothing well you just get on with it.gary had a massive heart attack so i had to deal with that as well, i had to be strong for him and the children, 2005 i went back to gp, this time he sent me to the hospital, so i went to see this 2nd in command he said he thought it was benign essential tremor, me being green thought ok, went to work carried on but struggling to work and shop for a family of five, i was exhausted and becoming nasty.apparently i had no facial features i was mask like but my family never told me..i would look striaght through them if they were talking to me.this one particular day i decided to have my tarot cards read and she told me to get a second opinion at the hospital so i did i had an appointment through on 4th august 2006 at 10.30am walked in he said you have pd no oquestion about it, through tears the only thing i could say was is it hereditary he said no.i came over all relieved, but i had not heard of pd so did not know what to expect,the nurses were marvellous they knew my sis was working that day on eye clinic so they took me to see her we had a hug and i couldn't stop crying. from that moment on i knew i had two choices i could either give up or fight,(which was not really an option i had to be strong gor my children) so i went on the internet trying to find any thing i could about pd and how to deal with it.my dad doesn't think any thing is wrong with me, he's a classic bury your head in the sand type of guy.i couldn't let my kids see me give up i had to fight for them to be as strong as i can, even now when my kids are with me 26,25,19 i put on a act. it's wrong i know but that's me. the one thing i don't like is people who hardly now me ask how are you, would they ask if nothing is wrong with you, people treat you differently.
hope this isn't too long charmaine
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