Diagnosis should never be done with dopamine - if symptoms are there neuro will be able to bring them out to play - many conditions could be helped by dopamine - once you're on it - you're on it and you have got it - if you know what I mean - the drugs will reel you in . Parkinsons a very serious condition - not to be taken lightly . If neuro. Can't diagnose keep not having it as long as poss especially when young . David , I mean only well to you and all on here believe me - would never say anything nasty to anyone but i have. Seen 3-4 people at conferences or meetings several times with no pd symptoms but on a lot of meds . I know every one is different with parkinsons - but not that different - young people with pd are gonna have it a a long time - best trying not to have it as long add possible also then . I think I know what I talk about but my thinking allways seems diferent to. Others but not met anyone yet who have had it as long as me able to do what I do on my level of meds - maybe I don't have it . Just advice - different opinions - what forum is about though I can see how I annoy others
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tapehead81/ David......welcome to PDUK.....I am sure you will find lots of help and advise from our Members.
Keep posting and letting us know how you are doing.
Radz x
Keep posting and letting us know how you are doing.
Radz x
Rubbish - I for one am not annoyed by any of your postings. Thanks for clarifying your earlier post though.
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Hi Rubbish,
I was wondering how long you have had PD ....you mention you havent met anyone who has had PD as long as you....ive had juvenile onset PD for nearly 35 years ...im 42 now nearly 43...have you had it longer than this?
just curious
best regards
Matt
I was wondering how long you have had PD ....you mention you havent met anyone who has had PD as long as you....ive had juvenile onset PD for nearly 35 years ...im 42 now nearly 43...have you had it longer than this?
just curious
best regards
Matt
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Hi Rubbish,
I see I have slightly misrepresented my situation by leaving out the fact that the neuro did in fact ask me if I wanted to go on meds. and did not in any way - as has happened to I think it was Sallymacs husband with the twitchy fingers - coerce me into taking levodopa. My symptoms were such that I would have swallowed anything at that time. At the age of 69 on dx two and a half years ago sinemet was the usual choice. I too have my worries about a slight acquaintance of mine who started with a hip operation and was subsequently diagnosed with PD the same time as me and who is on an ever escalating regime of meds and for a good while not under the care of a neuro. I on the other hand am still on the same
three tablets of sinemet with the addition of Azilect but I do do a fair bit of exercise and although I leapt at medication on dx. I am pretty wary, e.g. d.a's were offered but I declined.
Some people think PD may in future be diffentiated into distinct forms with distinct treatments but for the moment at the risk of sounding flippant we seem to be stuck with the situation that if it looks like a duck and quacks like a duck it probably is a duck.
I see I have slightly misrepresented my situation by leaving out the fact that the neuro did in fact ask me if I wanted to go on meds. and did not in any way - as has happened to I think it was Sallymacs husband with the twitchy fingers - coerce me into taking levodopa. My symptoms were such that I would have swallowed anything at that time. At the age of 69 on dx two and a half years ago sinemet was the usual choice. I too have my worries about a slight acquaintance of mine who started with a hip operation and was subsequently diagnosed with PD the same time as me and who is on an ever escalating regime of meds and for a good while not under the care of a neuro. I on the other hand am still on the same
three tablets of sinemet with the addition of Azilect but I do do a fair bit of exercise and although I leapt at medication on dx. I am pretty wary, e.g. d.a's were offered but I declined.
Some people think PD may in future be diffentiated into distinct forms with distinct treatments but for the moment at the risk of sounding flippant we seem to be stuck with the situation that if it looks like a duck and quacks like a duck it probably is a duck.
Cheers Tapehead81/David.
Glad you feel more at ease knowing you have your dx and this website has helped you. After mum's dx this website and its contributors were the first ray of lights on PD for me. Did your neuro say whether you will continue on madopar? Did he mention starting you on MAO's or DA's?
Thank you very much Jo72! That was very useful information and advice!
Are you on madopar? I'll get mum to try to move the arm slightly, as you suggest. When I told her to try to swing her arm (in the past) whilst walking it was very exaggerated and disorderly and I was very downcast after that. Brain plasticity .... interesting.
Once again thanks a million for your advice and sharing your personal experience. Much appreciated.
Best wishes to you,
rico
Glad you feel more at ease knowing you have your dx and this website has helped you. After mum's dx this website and its contributors were the first ray of lights on PD for me. Did your neuro say whether you will continue on madopar? Did he mention starting you on MAO's or DA's?
Thank you very much Jo72! That was very useful information and advice!
Are you on madopar? I'll get mum to try to move the arm slightly, as you suggest. When I told her to try to swing her arm (in the past) whilst walking it was very exaggerated and disorderly and I was very downcast after that. Brain plasticity .... interesting.
Once again thanks a million for your advice and sharing your personal experience. Much appreciated.
Best wishes to you,
rico
No Matt - of course I haven't had parkinsons anything like as long as you Matt and you do great to still keep facing up every day - amazing effort - maybe we meet one of these days somewhere though I don't get to conferences so much these days
Hi, well I really am new to this!.
After being diagnosed on 28th Feb this year at the ripe old age of 41 it's taken me until now to be brave enough and join the forum. I have a really supportive husband, children, family and friends but I don't think they fully understand how simple things like doing the ironing can sometimes feel like the longest job ever!. My movement has improved a lot and the PD nurse informs me I now have my swing back on my right side! Whoo hoo, it certainly does help to force it to swing ( when you can remember).
Does anyone struggle sleeping? I really can't understand why I'm averaging 5 or 6 hours instead of the 9 i used to have (& thought I needed!).
It's been good reading positive comments so am trying my very very best not to let this get me down!
After being diagnosed on 28th Feb this year at the ripe old age of 41 it's taken me until now to be brave enough and join the forum. I have a really supportive husband, children, family and friends but I don't think they fully understand how simple things like doing the ironing can sometimes feel like the longest job ever!. My movement has improved a lot and the PD nurse informs me I now have my swing back on my right side! Whoo hoo, it certainly does help to force it to swing ( when you can remember).
Does anyone struggle sleeping? I really can't understand why I'm averaging 5 or 6 hours instead of the 9 i used to have (& thought I needed!).
It's been good reading positive comments so am trying my very very best not to let this get me down!
hello langleyd & welcome. I hope that you will find the members of this forum as helpful & supportive as I have. There is no better source of information, advice & mutual support for a pwp than amongst a group of other pwp
I recognise your struggles with the iron. I now leave mine for someone else to do!. Sleep problems are very common amongst pwp. If it really becomes a problem for you, you might consult your GP? Some people find a mild sedative helpful. Sleep is important as natural dopamine is produced during sleep. Having said that, I feel lucky if I get 3 hr sleep/night & my GP will not prescribe & I'm still here!. Life with pd is not all doom & gloom. Do what you can when you can & don't forget to do some things that you enjoy (i.e. not just ironing!)
With my very best wishes
I recognise your struggles with the iron. I now leave mine for someone else to do!. Sleep problems are very common amongst pwp. If it really becomes a problem for you, you might consult your GP? Some people find a mild sedative helpful. Sleep is important as natural dopamine is produced during sleep. Having said that, I feel lucky if I get 3 hr sleep/night & my GP will not prescribe & I'm still here!. Life with pd is not all doom & gloom. Do what you can when you can & don't forget to do some things that you enjoy (i.e. not just ironing!)
With my very best wishes
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Hi Langleyd and welcome to the forum. I'm sure that now you have 'talen the plunge' and joined us you will find lots of helpful advice, should you need it, and the support of many others pwp. Lack of sleep is one of the things that we all seem to have in common, I average about 4 hours (if I'm lucky). My GP has prescribed a low dose sleeping tablet, Zoplicone 3.75. I regularly take one every night and am able to take 2 if I think it necessary without referal to the Dr. I find this does help. If you are awake in the wee small hours you can always find a few of us around should you feel the need for a chat.
Best wishes and maybe see you around the forum
Best wishes and maybe see you around the forum
Welcome Langlyd. I agree about the ironing. On a good day can manage it. I looked at light irons but so far havent found much difference in them. Polly
Hi Langlyd (unusual)
welcome to the forum and I hope you find the support you need.I am not bothered about the Ironing (barely ever did that anyway, that is what tumble driers are for).
What really bothers me is when I haven't got the energy to spend the day with my family. I took my daughter to the hospital yesterday for a procedure, took her home and stayed with her till her fiancée came home to take over, I went home,cooked the dinner and was so exhausted I felt ill.
Two hours with my adorable Grandson wipes me out but I really REALLY want to take him to Legoland for a whole day and enjoy it!
Caroline
welcome to the forum and I hope you find the support you need.I am not bothered about the Ironing (barely ever did that anyway, that is what tumble driers are for).
What really bothers me is when I haven't got the energy to spend the day with my family. I took my daughter to the hospital yesterday for a procedure, took her home and stayed with her till her fiancée came home to take over, I went home,cooked the dinner and was so exhausted I felt ill.
Two hours with my adorable Grandson wipes me out but I really REALLY want to take him to Legoland for a whole day and enjoy it!
Caroline
Thanks so much for your kind words & advice on sleep & ironing!! I just needed someone to say it wasnt just me struggling to sleep!. Does anyone have any ideas why this happens? The only thing I can think of is my tremors more or less start as soon as I wake up so maybe it's that kick starting my body into wake up mode!!. Having a bit of a shake more than normal day today so maybe I should take up cocktail shaking - lol!! X
Hi carolineb211, sorry I've just seen your posting, told you I'm really very new to this! Ahhh children can turn a bad day into a good one, it's tough isnt it when you feel so tired. Before have the PD I realise now that it was just a word I was using & I know now what tiredness is. I've found that taking myself off for half an hour (I even sit in my car outside work!) & try to relax & switch off for a few minutes helps. We must keep smiling & laughing as much as we can. Take care
it is probably worth pointing out that if folk seem a wee bitty blunt on this forum it is because they are passionate about PD and want everyone to make informed choices. this means that sometimes they do not sugar the pill. this can take a while to get used to. i think it to be a good way but you must remember that we all have something which brings us all together.
welcome.
welcome.