Meet and Greet


#1
Hi. I live in the UK, am 72 years of age, and was diagnosed at the beginning of November 2012 by a Neurologist at my local hospital. I saw my doctor on the 18 November and was put on Madopar (Levodopa/Benserazide 50 mg) three times a day. I was also diagnosed with Diabetes type 2 4 years ago and control this with diet/medication. I have also suffered with hypertension for many years and am on constant medication for that. I have not, as far as I can tell, suffered any side effects from the Madopar although it has not stopped my tremor completely. I am very anxious about everything particularly when a decision has to be made or I am going out. I was always "highly strung" but my nervousness and general fretting over most things has got worse over the past year or so. The Neurologist mentioned a PD nurse, physiotherapist and general support but I have heard nothing since my 10 minute or so consultation. The doctor just put the Madopar on repeat prescription and did not say he wanted to see me again. I shall be very greatful for any comments/advice

#2
Im sorry to hear of your diagnosis Leander but I would like to weclcome to the forum. Your experiences to date of the way that you have had your 10 minutes with the big guy and then left to worry yourself sick, is pretty typical of a lot of other peoples experiences on this forum. I so wish that the NHS could get it's act together in respect of this issue and at least have some sort of induction for newly dx people, it doesn't seem too much to ask for people to be treated in a sympathetic/empathic manner. I'm sure if it's a staffing issue others with PD on the neuro's lists would be more than happy to talk things through with the 'newbies'.

I have been dx for 11 years, I have had arthritus for some years and this week i have been told I have osteoprosis which is affecting my back and hip dreadfully.
It seems that we all have our cross to bear, some more than others!

Right now I am sure that you have a million questions and are wondering what now!
You should be contacted by you local PD nurse, if you do not hear soon I would contact the hospital and ask to speak to her/him.I would advise you to look through the Parkinson's uk site, where you will find some very useful reading about various aspects of pd, some of which you may or may not be experiencing, the information is invaluable and most helpful.

There are of course many books on Parkinsons which may help you, however right now you will need time to adjust and tell family and friends, you may need their support at some point.

If you need to ask any quaetions please feel free to post them and somebody will answer you, this community are very good at offering support and advice.

I hope to chat along the way...

Glenchass

#3
Leander, I thought that reading this personal blog may help you. It is written by one of our members and it encapulates feelings very well.

I hope it helps


http://dialoguewithdisability.blogspot.co.uk/

#4
Hi Glenchass
Thanks for your very helpful replies, much appreciated. To complete the picture I did have an MRI scan which was apparently clear but I understand that such a scan cannot confirm or otherwise a diagnosis? I have read in the forum of DAT scans which I assume are different?

#5
Welcome Leander.

I would hope that the medication that your GP prescribed was only after being advised by your consultant.

GP's, ours owned up to the fact that, they do not see enough patients, or know enough about P meds. to be an expert on such matters.

Don't be too despondent on your diagnosis; much can be done to alleviate symptoms for quite some time, years in fact.

When my OH was diagnosed 15 years ago, aged 47, my father was then 79 and he knew what the future held for my OH. He said that he wished that it had been him that had P because................he would be gone before it got bad.

There is a lot of truth in what he said all those years ago.

So, chin up,you do not die OF Parkinsons, you die with it, whatever you read in the press of.... so and so who died OF Parkinsons, (that infuriates me), but your age at diagnosis MAY determine your quality of life in the future, so the later the better.

#6
hi leander,

welcome to the forum leander you dont have to feel your on your own we are here for you to help in anyway we can, hope you dont mind me asking but which area do you live as i feel that some countys get better treatment than others i live in cumbria but am under a consultant in nwecastle as i got a referal by my gp his name is proffesor david burn and his team they are excellant could nt have better care if i were you i would try to find out from your gp about how to contact your pd nurse if there is one and also try to find out if you have a local support group have a look on the pd uk home page and you will find this imformation if you want to chat to me you can send me a private message and i will give you my phone number hope this helps sue.