Newly Diagnosed and meet greet


#1
Hi All,
I am a 67 year old male living with my wife and son in the west midlands, I was diagnosed with PD last Tuesday at the hospital by a consultant who passed it off as a every day thing which suppose to him it was,my wife and went in to see him sat down was shown my scan which he said shown that it was PD by the shape of two coloured dots and was told their was no treatment for me at this stage come back in 6 months time and if I need to see him before phone his sectary,revolving door springs to mind, I was in a state of shock after this news and would have liked to know how far gone am [I make it sound like I'm pregnant].At home i decided to find out my self all i could about PD as beside the scan my only symptom is a tremor in the right hand which strangely enough has not been too bad since my hospital visit any way to cut a long story short i got in touch with my local PD group and attended their meeting on Thursday were I met a lot of nice and informative people and i did learn a lot in 2 hours so i joined and shall be going again next week.

Thanks for reading
Silver spoon

#2
Hello Silverspoon welcome to the forum. I am shocked to read you were fobbed off like that at your first hospital visit. I am however glad you have found a PD support group in your area.

Getting news of any incurable disease is a total shock to the system.

I hope you find help, support and advise given by the members all useful to you and your wife.

I wish you both all the very best with your journey,

Radz x

#3
Hi Silver Spoon and welcome.
Yes, I'm afraid consultants can sometimes be a bit insensitive. However, you are doing the right thing in contacting local support groups and finding out as much information as you can. Also do keep in touch with the forum. Plenty of advice here.

Good luck! Be strong!

#4
welcome silver spoon
I have found more helpful advice from other pwp than from the medical profession, except of course for the precribing of medication. Well done you for joining your local group
With best wishes

#5
Even our GP told me the best advice he can give us is to be in contact with other Parkinsonians . I some ways he is correct you can learn such alot more . Hearing what they all say make you feel less insular I feel less trapped .

Whether a sufferer or partnet/ spouse carer / supporter we all have PARKINSONS and have a much better understanding of what is happening .

With help of the internet we are in contact and have now met many others and have become friends . We would never have met them if we hadnt been touched by Parkinsons.

#6
Hey Silver Spoon,

A very similar story with my father, who was diagnosed in august..hes 59.

he has a resting tremor in his left hand and a few non motor symptoms including anxiety.

he too was told very little about PD after being told he had it, and was told to return in 6 months.

He has been given a drug called azilect, which is designed to make use of the remaining dopamine he has rather than using stronger drugs.

please feel free to private message me as it sounds as though your in a similar situation to my dad!

#7
Lots of similarities to my husband's experiences too.

#8
To all who replied to my posting thank you it is nice to talk to people with more knowledge on the subject than me.
silver spoon

#9
Hi There
Iam 46 years old and have just been diagnosed with PD, after also being fobbed off for two years by the doctors saying it was because i used power tools, in the end i paid to go for a private consultation and saw a wonderful consultant who arranged for a DAT scan through the NHS, my only dissapointment was that i received the result in a letter confirming i have got PD unfortunately my wife opened the letter and like myself we were devastated, i think it would have been nice to have been called in and told to my face.

So i have lots of worries for the future IE job as i do manual labour, but every one seems so posotive on here and hopefully i can draw from that


Paul

#10
Hi there to Paul and silver spoon ...I have just read through
your last entries ..I am disgusted as regards the attitude reflected by the professionals to your intitial diagnosis ..the Parkinson,s U.K.should be in no uncertain manner challenging the people concerned .I am 5 years post diagnosis myself ..your experience does not reflect ..the amount of dedicated people who are out there giving support and encouragement especially to those recently diagnosed ...they need to research the subject ( my own GP for instance admitted to me when I was diagnosed with P.D. he knew very little about the condition but since is very much up to speed)
There are a few doctors etc out there who do not fully know and understand what P.D. is all about I am very fortunate ..in my area we have a consultant nuerologist who has an interest in P.D. and two Practice nurses funded by Parkinson,s U.K.
Above all else you live with Parkinson,s tackle it head on do not give in to it keep active mentally and physically do not throw in the towel and give up....

Regards to all concerned ...Ian (M)

#11
Hi silver spoon

I just been to the gp and he's notice a tremor like you on my right side.I've been refered to a consultant. I think I've got pd and had it ages.I have found I've got alot of symptoms of pd that it can't be anything else.I was putting the blame on arthritis.but I've recently got a blocked salva gland,trouble swallowing,shuffling feet,speech problems and not sleeping.I worried to say the least because I've got to kids with disabilities I want to look after them till my later days but who knows what's going to happen.always look on the bright side.things could be worse,so I keep telling myself.

Rob

#12
Diagnosis is devastating whatever your age and one pictures a worst case scenario, but Parkinson's is such an individual condition(I refuse to call it a disease.) that you may well have many,many years when you function,with medication, pretty well normally. My husband eight years down the line (aged 69) is still doing all the things he has always done.Maybe he does not play his squeeze boxes quite as well as he did but better than most people. I once heard Parkinson's referred to as an "unwelcome guest" and that seems a good way to think about it.Get on with your life and ignore it as much as you are able for as long as you are able.