Diagnosed yesterday


#1

Hi all,

i was officially diagnosed with Parkinson's yesterday. - I say officially as I kind of already knew from my first appointment at the Walton centre where they asked me to try 4 months on ropirinole which had eased my symptoms somewhat.  

Even though I knew it was coming I am still a little in shock - never knew you could get PD at 43. I am struggling a bit today so I've called in sick which I hate doing but the neurologist upped my ropirinole again yesterday and I feel terrible - I seem to feel really sickly with the ropirinole every time I up the dose then after a couple of weeks it settles - don't know if that's  normal?.. 

Anyway I am now of course reading everything I see on PD and letting close friends and family know - which is interesting they all react differently - it's took nearly 3 years to get diagnosed as I have been referred to pretty much every department in our local hospital and each had a long waiting list until finally an ENT consultant which I was referred to because of my balance issues told my GP I needed to see a neurologist so  I was finally referred to Walton and here I am a little wary of what's to come but can already see this website is full of information.

 

 

 


#2

Hi Eccles, 

Sorry to hear you're struggling today. It's understandable and does take time. 

I'm on meds since November. 8mg  Ropinerol. It does make you feel ill for a few days then settles down. Ginger is good and taking meds at same time every day. I hope to stay on low dose for a while as read alot about side effects. Nothing too bad for me so far. 

Be kind to yourself. 


#3

Thanks DivineR - I'm up to 10mg my tremor has stopped but consultant has said to go up as far as 16mg consulting my GP unless the stiffness in my arm improves :( If it doesn't work he's mentioned other drugs as well. I also moved the timing of tking the drugs yesterday so that may have had an impact :S

Feeling very sorry for myself and need to snap out of it - think seeing it formally written down has made it all real. I told my 12 year old last night as well he reacted better than most of my grown up family.

 


#4

HI Eccles,

I was diagnosed last spring. It does take a while to get your head round it, don't rush it, go at your own pace and if you feel sorry for yourself  sometimes that's perfectly understandable.

When I first looked at this website I frightened myself to death and couldn't bring myself to look again for two weeks! After that I read a bit at a time, never just before bed time. Gradually it got more bearable and now I can go quite a while without thinking of PD.

I agree that telling people is not always easy and some reactions are far from helpful.

Parkinsons uk has been very helpful and if there is a Parkinsons nurse in your area they are good too. The best thing my parkinsons nurse said to  me was that there's a lot of help out there and that usually symptom changes are gradual.

Take care and don't be hard on yourself


#5

Thanks Daffy - the consultant has written the the Parkinsons Nurse asking her to see me in 6 months time - I think thats scared me a little as well as it feels like I'm on my own for 6 months (my gp seems to know very little about PD from previous conversations - I can google myself). My husband is trying to help of course by reiterating that the consultant has said it could be years before things get worse - I just can't see past the diagnosis yet (think I was in denial before I saw the consultant on Thursday).

 


#6

Hi Eccles, 

The PD diagnosis will consume you for a while. Just go with it and work through it. Work out what helps you (diet, exercise etc) and what doesn't (stress, negative people). 

I've reached a good point at the moment being a year in. But I'm not fooling myself that in the future changes won't happen. Live in the moment (cliché but true). 

As for the PD nurse, get the number and talk to them yourself. I know I can ring mine between appmts. You shouldn't have to wait 6 months. 

Good luck! 


#7

Hi Eccles,

I'm about a year on from official diagnosis too now. And I don't feel a lot has changed symptom wise for me. On the plus side I have learned to stop fighting it. If I am tired, I am tired, period. Now I know the reason. Before diagnosis I had a variety of symptoms for a couple of years that I just couldn't understand and tended to wear myself out battling through with the result I became very snappy with loved ones.  Especially anxiety attacks that were right out of character. Now I know where they're coming from and can handle it better. It all takes hard work though and while my husband is very supportive it can be difficult and I am still prone to the occasional "meltdown".

I also find that now a days if I want to do something, where as I would once have prevaricated, I now think "what the hell might as well". With the result I have taken up bee keeping! Something I have wanted to do for years.Take care.


#8

You shouldn't have to suffer the sickness which can happen when  taking Ropinirole.

Ask to be prescribed an anti nausea drug for a while; motilium for example.


#9

Hello

I was diagnosed 23rd May 17. I live in Germany and my diagnosis was rapid. After a few weeks  of an aching arm  then tremor and my husband telling me I wasn't swinging my arm properly I went to the GP she rang a neurologist who gave me the appointment the next day. After two hours of tests told me I had PD - unbelievable. Datscan followed a week later and results were confirmed on 23rd. I started meds the next day yet to see any effect.

It's a very strange feeling as I am sure you all know - trying to process it and not look too far ahead.

Very happy to have found this site. Wondering when PD will not be dominating my thoughts!


#10

Thanks all for taking the time to respond - Guess I just need time to process the info, I will ask about the nausea tablets the consultant has already mentioned.

Frau wow that's very quick for your diagnosis it must have been quite a shock. 


#11

Hello Frau

It does take a while​ to get to the point​ when you don't​ think about all the while. You can't rush it. I agree this is a very​helpful website​, answers a whole lot of questions​


#12

Yes a huge shock, but trying to think positively.. and waiting for medication to kick in. Hope the nausea passes soon. 

 

 

 


#13

Thanks for taking the time to reply Daffy. 


#14

Hello Frau,

You're welcome.  I didn't get around to joining this forum until a year or so after diagnosis. I wish I had earlier because I find it helpful to read and talk to others with PD as I have never knowingly met another fellow PD person. Somehow it makes me feel less alone on this journey none of us willingly embarks on. No matter how supportive my husband and family are I know they can't truly understand how I feel.

Actually thinking about it my husband had emphysema, he manages it well but, I can't know exactly what it's like for him. I guess that makes us quits doesn't it?

Take care and try to maintain a positive outlook, not always easy I know, but it helps in the long run


#15

Hi Eccles

Just reading your blog I was in the same position about 10 months ago. I was 49 my wife said I was not my normal self slowing down struggling with some tasks and very tired.

Luckily for me I was on BUPA through work, and quickly diagnosed and put on  Ropinerol.

I didn't get to see my PD nurse until January this year she told me I should have had two months off work when I began medication as it knocks you about so much.  Too late to tell me after 6 months, the first few weeks were awful. 

Now 10 months down the road I have seen my neurologist again she has added some Madopar  to my medication just to give me a boost. 

My PD nurse has got me physio in the swimming pool and upper limb physio with the OTs I have been visited by occupational health it all seems to be coming together now.

What I am trying to say is in my experience nothing seemed to happen for a long time but when you get in the system a lot can happen very quickly. 

I'll  admit that it can get you down and we all have off days but life goes on one way or another. 

Keep smiling. 


#16

Hi Frau.

My husband was diagnoised nearly a year ago now. Took many years of misdiagnosis. ..frozen shoulder,trapped nerve,age etc etc...finally got to see neurologist last August. He was diagnosed in a few mins due to his obvious symptoms. He was put on sinemet....had another appt with neurologist in May.Saw him for only 5 mins. ......thats all my Husband has had! Apparantly there is a PD nurse in our area who started at Christmas,after the other 1 left the job...so the support my Husband has had is next to nothing....luckily he plods on and is still managing to work. I read the forum for advice and post sometimes but I must admit I feel very disillusioned with the lack of help really.

The consultant from the May appt copied the PD nurse into the letter so maybe she will realise my Husband is around and get in touch? Then maybe there will be more help forthcoming.

I did go to the  PD support group locally but as we are only 60yrs old found the group was not appropriate for us as the average age was 70yrs + even though they were very friendly .

Keep checking into this forum Frau there is always someone to answer and support you...take care x


#17

Thanks for taking the time to respond I have tried carrying on regardless with work but the nausea and stiffness is not great and I am public facing so I've ended up coming home on Friday - my manager has suggested I need some time off to adjust to the drugs which I'm considering will have a chat with my GP today. Just feel like I'm in no mans land at the moment as I know my GP isn't that familiar with PD - she literally googles everything when I ask a question. I am even struggling with swimming which I love at the moment because I am so stiff. 


#18

Hi Eccles

Sorry to hear you are having a rough time at the moment. From what I have heard a lot of GPs do not have much experience of PD and rarely come across cases in their daily work.

If you need time out and can take it  you probably should to give yourself a breathing space. I have learned that with PD you need to be "kinder" to yourself, you can't always plough on.

Sometimes a nice hot drink and half an hour with a good book is enough to recharge my batteries a bit. But given what you have had to take on board just lately and the medication to get used to as well, you probably need a longer break.

I wonder if there's a Parkinson's Nurse near you  that you could get in touch with, If only a phone call, as mine is very helpful.

Take care and be nice to yourself


#19

Hi Daffy there is a Parkinson's nurse a few miles away I was going to ask the Gp about a referral - not sure if that's how it works? my consultants secretary is off Sick as well so he has a backlog of letters as well so he didn't know when he would be able to write to my GP or the nurse he just sent me away with a prescription script for the GP. 


#20

Hi Eccles

I don't know if you have looked at other areas of PD Website but there is some information and numbers to call listed there including a confidential help line 0808 800 0303. May be it's worth asking your GP if they could help with referral at all, explaining that you seem to be between a rock and a hard place at the moment(what with consultant's secretary being off sick etc) and could do with a bit of advice and support. Take care of yourself