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cure28
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Posted - 26 Jul 2011 21:48
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Hi,
i just thought i should introduce myself - my father was diagnosed with Parkinson's in 2005. He has always been healthy but had the shaky little finger which we always ignored until the day it was diagnosed. i like many others knew of Parkinson, but didn't know much about it or know anyone who had it... fast forward to now and my dad is around 64/65 and he continues to work and play golf but the shaking of his hand has got worse. We have tried different meds and he is thinking about DBS. Aside from his hand, he is pretty much ok, but i do worry about the future. The thing is like you all know better than me is that we all go through so much different emotions.. i am so angry that there is no cure and i feel that dr's, neuros i know are trying there hardest but i feel that medically no one understands Parkinson's or what medication to give. You could try 4 different dr's and they could suggest 4 different drugs, and all these drugs are so powerful and can have side effects. I feel i should utilise my frustration towards raising money and making people aware of Parkinsons and that is what i will do...but i feel governments need to make more of an effort to find a cure. Anyway sorry for my rant, not much of an introduction..but hi!
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Pebble
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383 posts
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Posted - 26 Jul 2011 22:39
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Hi Cure and welcome to the forum. You are quite right, Parkinsons is such an individual thing, we all seem to progress at differnt rates, need and take different drugs with an almost endless variety of reactions. But one thing we all have in common is the confidence that a cure will one day be found, even though the condition is not so high profile as other illnesses.
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rico
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Posted - 26 Jul 2011 23:38
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Hi Cure28,
Welcome to the forum!
The tremor is unfortunately a persistant beast. DBS should fix that and it does not appear out of bounds for your dad as it does for my mum.
Know what you mean about the different meds. The older people are with PD the more stock-standard the meds are (i.e. usually levodopa), but your dad's is on the cusp where different meds will be thrown up.
What meds is your dad on?
Understand fully your frustration and the cycle of emotions. It is also frustrating that the non-motor effects of PD are simply ignored when they are also affect QOL of both PwP and family.
Once again welcome and keep us posted!
Kind regards,
rico
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nene
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81 posts
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Posted - 27 Jul 2011 00:35
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hello! I know what you mean about tremors and stiffness,emotions everywhere minute by minute, what I find really difficult is I'm so lonely with this pd. My pd nurse is 35mls away, and I don't want to "trouble" her,Although I know that it would be no problem to call at any time,it's me that's with holding myself from help!
I think at the moment I need counselling with someone who knows about pd.I am grateful to find this forum,and more so for the help that is here, but I don't think It'd be fair to pm any one of you lovely people if your feeling good then I have a real moan.Sorry if this is on the wrong thread.
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nene
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Posted - 27 Jul 2011 00:41
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Cure welcome to the forum. There is lots and lots of help here.Pebble and Rico I'm sorry if I wandered from Cure's topic.
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lizzy p
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Posted - 27 Jul 2011 05:39
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Morning Cure - welcome to the forum.Yes, PD is a very individual illness and getting the medication right can be a challenge. A couple of years on from diagnosis and my medication is being changed yet again but we just need to keep praying that a cure will be found and I am confident that it will be found.
There are some very informative people on this forum who I am sure will be able to answer any questions you may have.
Lizzy
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ali j
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Posted - 27 Jul 2011 07:38
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hiya welcome to the forum ,im ali ive had pd 10 years now ,im 42 ,there is alot of info on the forum and good friends ,i hope to see more of u around x
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glenchass
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810 posts
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Posted - 27 Jul 2011 10:30
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Hello and welcome Cure, I'm sure that you will learn lots on the forum there are loads of people who have lots of experience and they are usually very helpful. You don't say what meds is your father currently taking but let me assure you that pd is not the end of the world or life. Ive had it for almost 11 years and I'm not written off yet!! Just try to learn as much as you can about the condition so that you understand your dads reactions to it more and give him loads of support. In the meantime we wait for the big cure.....
NENE:
A warm welcome to you also. Don't be afraid of having a good old moan on the forum, in fact I think there is a thread available for a moan session somewhere. There are times we all feel c..p so feel free to let rip. We are all hear to help each other and listening is part of that process.
regards to you both
Gleenchass
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rico
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Posted - 27 Jul 2011 14:33
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Nene wrote
"Cure welcome to the forum. There is lots and lots of help here.Pebble and Rico I'm sorry if I wandered from Cure's topic."
Apology accepted. Just don't let it happen again!
Seriously, Nene, feel free to vent. You're amongst friends here and we can all relate to what you are going through. Mum is forever thanking me for even doing the smallest of things, she, like you, doesn't want to put people out. But you'll find these people are more than willing to help .. and from what I read and hear, these UK PD nurses are cut from a fine cloth, lucky you 
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cure28
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Posted - 30 Jul 2011 00:24
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Hi -
Thanks for your replies...i was worried noone would say anything and i thank you for replying. I feel so helpless sometimes and wish that i could do more. Not sure on the med but shall find out.... whatever we believe or feel, we are all dealt a hand - and that is what we have to up with...... but a cure we shall find, when i dont know, but we will!
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