New to group


#1

Hello all, I’ve been diagnosed a week ago, although I think I’ve had symptoms for 18 months , just started on repinex and waiting for them to kick in, I’m still in denial really, kinda got it into my head it wasn’t PD so was very shocked when the neurologist said so, my symptoms are weird, sometimes I have tremors and sometimes i dont, I never noticed my right leg dragging until it was pointed out, now I’m conscious of it, I get a bit panicky at times as sometimes I have trouble swallowing food , sometimes I don’t !!! I have no obvious tremor except when I use my right hand , it seems to be my right side…I do feel like I’m vibrating all the time though… I just seem to be tired all the time I’m guessing it’s the 5 million times I have to get upto pee at night !!! Do people have good and bad days ??? Is it just downhill from now on ??? In trying to be positive , just abit hard at the moment, I’m waiting to see my PD nurse, and tips or words of encouragement would be great… Love to you all xxx


#2

Hi Angela,
It is a scary time when you’re first diagnosed and you don’t know what to expect. My symptoms are similar to yours, i was diagnosed nearly 2 years ago.
Some symptoms come and go, like the swallowing. I chew gum as it seems to help that. Stress agravates the symptoms and can make tremors worse.
When you see the PD nurse, have a list of questions and they will put you at ease. By exercising and looking after your diet, you can at least take your mind off the negative, at best help slow progression.
Diagnosis is not the best thing you have ever heard but you can still live a good life.


#3

Hi Divine 1 .Thanks for you’re kind reply .I spend most time just reading the forum and on the word games in the social club and don’t feel experienced enough to help with any advice as I have been to I have PD by my neuro only for him to say six months later that my DAT scan was normal and withdraw extremely quickly Co levodopa and sinamet then put me on anti depressants and clonazepan meanwhile I’m still shaking it like Polaroid picture and my GP thinks its “shocking” .I see my neuro again in August and just remain undiagnosed and in limbo getting more depressed. Sorry I’m rambling now .Meanwhile I appreciated you’re kind advice to new member Linda . keep on with the forum coz I’m sure it provides comfort at what is a scary time .XXX T1 …Tommy.


#4

Hi Tommy,

I’m no expert, just some one else with PD.
I’m sorry to hear you’re in a kind of limbo. Can your GP give you another referral to a different neurologist, just to get a 2nd opinion? Or would it be possible to go private, just for a diagnosis? It’s very expensive but for relief from your situation, it might be worth it.


#5

Hi Divine 1 . I have not worked for 2years .I did suggests to my GP about a private consultation but he said the problem was I would probably be sent for lots of expensive tests .Meantime my front teeth started getting painful and slack and I could not get an NHS dentist where I live so had to go private. Treatment starts next week estimated at £1100 .But if you saw me shaking in the pharmacy queue you would understand why I chose that option .Without front teeth I would look like a stereotypical addict waiting for his meds .I’m afraid there is only so much disposable Cash to go round .Anyway I would not put my Wife in financial trouble just for me .We still want normal things like a holiday for me Her & the spaniel got to get the priorities right …Tommy


#6

Hi Angela …I’m sure you will find the forum invaluable I wish you well and also send you an apology because I called you Linda in a post to D1 …good luck to you… Tommy.


#7

Hi again T1,
You already have a lot of expense to deal with. At least you have a sympathetic GP. Do you have a PD nurse in the area. They are a godsend or talk to one from PDUK, at least for some advice.
You cant discount the value of a family holiday for your health, so i would say you have your priorities right!


#8

Hello again Divine 1 .Thanks for you’re help. I have an appointment for Mr GP to try and beat this insomnia before I go ga ga .Just on a lighter note I walked the dog this morning and he came home with a tiny thorn in his paw and the fuss my OH made of him was unbelievable anyway I said to her ,"you love that dog more than me "she said " I love the dog next door more than you " OUCH…Tommy.


#9

Thanks for your kind replies, been on Requip for 10 weeks or so and I can things are 80% better, although I do have “off” days or periods !!! But in the whole all good, still waiting to see my PD nurse but have spoken to them twice , so lovely, although I’m abit upset as she wants to reduce me down to 6mg due to nausea , which for the last 2 days hasn’t happened as the nurse said I should take my meds 1 hour after eating and this seems to have done the trick … Onwards and upwards and on a good note a fellow “parky” has just had DBS and it’s worked xxx


#10

Always be positive. You are doing great! Love you too!!


#11

Hi William 1
I am Tommy and don’t get me wrong please I like being told that someone still loves me but as I don’t know you yet .
I mean you haven’t even asked me for a date yet LOL
Seriously though I think your message was meant for someone else.
Hope you are well as can be expected and we can be friends on the forum though… TOMMY :pill::pill::pill:


#12

Hi tonmy, I thought William was telling me he loved me ??? Now I’m confused who there loving !!! Xxx


#13

Hi Angela
No problem but I would have liked to be taken to dinner at least.
I found it quite funny actually and sent a private message explaining.
It gave me and my wife a laugh and that itself is a good thing given the problems we all suffer on here.
Oh I’m delighted William loves you and I hope you and him stay in touch with me ,(you two could just be my friend if that’s ok LOL) TOMMY


#14

Hi Tommy , I wish I knew who he was , it’s nice to be loved !!! And quite happy to chat with fell I liked minded people xx


#15

So he hasn’t even taken you to the theatre or cinema either .
Oh well at least he loves you and that’s nice .
At least he has got us all together on the forum.
But now I’m confused and maybe even a tad jealous LOL.
Hope you are as well as can be expected a little laugh always helps eh? Still nice to meet you take care TOMMY :pill::crab::crab: the crabs are not what your thinking their about the way I walk I keep bumping into people but the good thing nowadays is that they apologize to me coz most of them are on their phones… TOMMY


#16

Hi Angela

This is my first visit back to the forum in 4 years! When I was first diagnosed I found a wealth of info and experiences on these pages which helped me over the shock and I hope you will too. You describe the shock of diagnosis extremely well and no, it isn’t downhill all the way. My neuro told me that degeneration is a lot slower in someone with a tremor and 5.5 years later that certainly seems to be true. It is especially poignant for me because I have suffered cancer and operations for two other non-related conditions during the last 3 years. So chin up, exercise will improve your gait and distract your mind. Join your local group, get involved in research, learn about this condition but above all, learn to listen to your body - what improves things for you and what doesn’t work. All the best. Fizzy 60


#17

Not even a box of chocolates :disappointed_relieved: Laughter is good , couldn’t agree more , your :crab: Emoji made me smile, I’ve been wonky for years, I swear door frames and chairs don’t like me as they are always throwing themselves in my way !!!


#18

And now I’m sending messages I havnt finished yet :thinking: in going to bed as tired… Chat again soon Tommy :crab:Xx


#19

Hello fiz, thank you for your kind words , I’m trying to stay positive …ill get there…I hope your ok. You sound like you have been through the ringer yourself … I’m looking into exercise ( to be honest I do have a fear of it ) I may try yoga and unfortunately I don’t drive and my local group are miles away…, take care xxx


#20

We are probably better off without
Him
I think he’ll cheat on us both HA HA
GOODNIGHT TOMMY :pill::pill::pill::crab::crab::crab: