Newly diagnosed

About me Introductions and personal stories
1

Hi Everyone

I've just recently been diagnosed with Parkinson's at the age of 44, It's been a difficult time thinking it was only a trapped nerve affecting my left side, but I'm going to be positive in my outlook in life. It would be nice to hear from people in a similar postition.

Regards

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Hi Admac,

Welcome to the forum. There are lot's of helpful people here - I found it quite reassuring knowing there was somewhere I could ask questions if I needed to.

I was diagnosed last year when I was 33, and I'm totally with you on the positivity thing.

Best,

T

 

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Hi Admac a warm welcome to the forum . I was diagnosed in sep at 45 . It is a shock , I was expecting to have an op on my shoulder . However that was six months ago and you do start coming to terms with it . PMA and plenty of exercise and keep laughing - it's the best tonic  . There's always someone on here to listen if you need them . Very best wishes . M

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Thanks guys As they say just what the doctor ordered . Nice to hear that your not the only one, I was a bit in denial at first
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Another welcome, Admac!

It's true that at first we are almost in denial, because the diagnosis is unexpected (and so distressing) that it feels unreal.  At least, that's a common reaction, though not true for everybody.

Maddison is so right about the laughter!  Happiness produces the most beneficial chemicals in the brain.  Optimists do best in fighting these long-term illnesses.  Actually, I don't even think of my case of PD as an illness any more.  It's just a condition I live with, like being a bit too short and having rather weak lungs.  Luckily, for most of us this is a slow-moving disease, and if you find the right medications for you and get lots of exercise, you can fight it effectively.  After 18 years with PD, I am still living the same life as always.  I know there are harder times ahead, but I try to focus on the present and keep my spirits up.

Best wishes to you.

J

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Yes getting the medication right and carry on with my life, I've been a little hesitant in who i tell what's everyone's take in this matter. 

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hi admac. Welcome exercise and living life to the max is the key
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Thanks Gus 

Started on my meds dopamine agonist so i will see how it goes. Is anyone else on these tablets,

 

Admac

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Hi Admac . I have told family and close friends ,and a couple of people at work . I work for myself ,full time . I don't want it to be common knowledge yet as I want to carry on as long as i can . I can do the job I will be the first to say if I can't . I fear that people sadly will question whether I can do the job unnecessarily if its common knowledge and as I said I'm self employed .  

I  have been taking azilect for six months . I began them straightaway as I needed to . I had symptoms for three or four years before diagnosis . They had some effect no side effects and I still take them . They believe they may be neuro protective . Are you taking them ? I know j (above ) advocates taking them if no side effects and she has taken them since they were available . 2005 I think . 

I have recently started - a week ago - on ropinerole 2 mg and so far so good . Bit of nausea . Eating ginger biscuits helps . Have got anti sickness domperidone if need be . Did your consultant explain to be aware of possible side effects with the dopamine agonists ?

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Hi Maddison

I'm only on the ropinerole at the 

moment 4mg . I started on 2mg now on 4mg its seems to make me eat more.

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im on 4- 125mg /3- 62.5mg sinemet and also have deep brain stimulation but my pd was very aggressive 8yrs had pd but nero reckons had 5yrs before dx .but still wining the fight only gave up working 2yrs ago and I was a gas fitter / plumber so you can keep working
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Hi Admac

Welcome to the forum! I started on Ropinirole 2mg XL slow release 4years ago, I'm now taking 14mg and they suit me fine. There are a lot of people who cannot take dopamine agonistics because of possible side effects which should have been explained about to you. I personally have not had a single side effect, so I'm hoping you'll be the same and good luck with it.

Regards Sheila

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H Sheila

At first on 2mg i thought were making a difference, after 2 weeks now on 4mg so i think it will be a a process on how much they will give me. It will take me a while to get my head round it . I appreciate all the help from the forum

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Hi Admac

 Welcome to the forum I'm on Requip xl 16mg a day and apart from nausea for a few days when I up the meds and an urge for pork pies while I have the nausea. ,,,,,,,,not a good mix   Lol I've had no problems with ether,though as Sheffy said some people have bad side effects so do keep a eye out for any unusual behaviour or cravings, if you have someone close get them to watch out for you as well.

   Live well.  Cc

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Think I will stick with the ginger biscuits rather than the pork pies Cc !

Admac - I have been told to increase up to 8 mg very slowly . 2mg increase every four weeks  . I read somewhere can't remember where that the usual effective dose for most people is a minimum of 8 mg . Mine are slow release . I take them in the morning . What time does everyone else take theirs , Does it matter ? Don't want to be a total insomniac as sleep not great as it is . 

Gus - good to hear you carried on working for as long as you did . I'm sure I don't just speak for myself when I say your input on this forum is appreciated . Your experience and knowledge of the drugs / treatments is of great value . 

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Thank you for those kind words .maddison

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Hi Maddison, I also take my Ropininrole 14mg slow release at around 10.30 every morning. I was advised to take them on a morning, and it suited me to take them at that time. I don't have any side effects least of all sickness. I also seem to know when I need to increase the dosage I then contact my PD nurse.

Hope you're keeping well........

Sheila

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Hi sheila

I think i will get in touch with my pd nurse. Early days think I was expecting the tablets to work straight away.

Need to getting over feeling tired and hopefully start doing more.

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Hi Admac

The meds don't start to take effect immediately because they are slow release, but they have to be increased slowly as well. Mine took at least three to four weeks if I remember. Contact the PD nurse if you don't feel as if they are working, they don't suit everyone as I said, you may need something different.

Regards Sheila

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hi 

i was told 8mg was theraputic dose but have to go up slowly so hang in there . 

im on 14mg but on sinemet as well . i didnt feel better till on sinemet and now feeling as if nothing wrong with me .. thats if ignore morning stiffness and the limp when meds wear off!!! but definitely back to my old self .diagnosed sept last year .