What happens now


#1

Hi

I was diagnosed in Oct 2015, the day after my diagnosis I went in to work, told my colleagues that I had PD and that was that.

I have been given a drug called Rasagiline which is to help slow down the progression of the PD, my Neurologist told me to take the tablet and to get in touch if things get worse and he would look at putting me on another tablet along with the Rasagiline, and that was that really.

I am due to go to see my Neurologist again in October, which will be a year after my diagnosis.

I do feel that I have been given the diagnosis and then been left to get on with it, I have read on the Forum that some people have Parkinson Nurses and they have regular visits to the Neurologist, I know it is early days for me but I just feel that I have no support.

I am really glad that I found the Parkinson's Website and I am sure that I will get a lot of information about PD, but, I do feel out on a limb.

 

 

 

 


#2

 

i have almost regular access to see a PD  nurse 2- 3 months or sooner, but appointments with neuro can be a little vague 4 months can turn into 8, if you make contact with the Neuro's secretary, usually an answer fone, the neuro should then ref you too see a PD nurse if you feel like support is lacking, i feel personally they are worth while and more in depth usually than with the neuro in time.

you can search via the web site too see if one if available locally & local support advisor, Your GP  at the start should be a little involved monitoring your progress from diagnosis,request copys of letters from appointments to be sent too you also so you can see/read what has been suggested by neuro/nurse/gp.


#3

Hi Beatrice,

I agree entirely with sea angler get in touch with your local PD Nurse. Ours is invaluable as its nearly yearly that my OH sees his Neuro. Also your GP is a good source of information and support. We are very lucky my OH's GP is nothing short of amazing, he's always there, gives us extra time and will even see me on my own if I have a concern, he kinda takes us both as a package which is so useful.

The one thing I have found is you sometimes need to push a bit with these Neuro's...they seem to work at a snails pace with everything! and your not on your own by feeling like you have been left to it so to speak. Best advise I can give you is if your not happy at any point, go back, dont leave it and see how it goes but I do think the first port of call should be a PD nurse in your area and maybe also a support group? Not for everyone but its sometimes nice to chat with people who actually understand, also dont underestimate the Parkinsons UK helpline. They really helped us on a number of occasions and I dont know where my OH would be without the help and support he has had from them.

Never feel like you are being left out on a limb, once you tap into all the help that is around you I promise you will feel more in control.

Wishing you the best of luck

Beth xx

 

 


#4

Hi Beatrice,

I just wanted to welcome you to the forum and add some links to the information sea angler and Beth13 have given you, just so you can find the support you need more easily.

Of course, you can always come to the forum to chat to others about how things are going and ask any questions from the community, as they understand what you are going through and provide an invaluable support network. You can also call our free helpline on 0808 800 0303, which is open 9am-7pm on weekdays and 10am-2pm on Saturdays, for practical advice, emotional support or to talk to our advisers and Parkinson's nurses about any aspect of living with Parkinson's. There are also local groups that you can join to actually meet up with other people with Parkinson's. You can find one near you here: http://www.parkinsons.org.uk/content/local-groups or if you are of working age you might want to check out younger people's groups near you here: http://www.parkinsons.org.uk/tags-forum-and-website/younger-peoples-groups

As it's been mentioned before, Parkinson's nurses can be an invaluable source of help and support. You can read more about what they do here (http://www.parkinsons.org.uk/content/parkinsons-nurses) and check with our helpline whether there is one near you that you can ask to be referred to. You can also get in touch with your local adviser (you can find your nearest one here: http://www.parkinsons.org.uk/support-for-you/support-your-area/local-advisers) to help you manage living with Parkinson's and tell you about the support available to you in your area.

I hope this makes you feel a little bit less left to your own devices. You are not alone in this and there is plenty of help and support available to you, so don't hesitate to use these resources and get the help you need.  

Best wishes and please keep us posted on how you get on,

Mara
(Moderation team)

 

 


#5

Hi Beatrice,

I felt just the same as you, after being diagnosed in 2012. My neurologist told me he would see me in 12 months time and that was it! A lot of us are callously left to get on with it and expected to cope. This website and forum was never mentioned to me, I stumbled on it by accident, but it provides help, support and information  which I find invaluable.

There is a huge shortage of neurologist's specialising in Parkinson's and so our appointments can be few and far between. I waited over 18 months to see mine last time. Unfortunately my PD nurse was not very helpful either and I lost trust and confidence in them both, so I have changed to a different hospital. I had my first appointment there last week and they couldn't have been kinder and understanding, explaining everything in great detail and consideration.

I hope you get some comfort from joining this forum and remember you're not alone......there's always someone here to talk to. All the best.

Twinks.


#6

Thank you for the information and for taking the time to reply.

 


#7

Hi Beth

Thank you for taking the time to reply to my post.

I will start to look at what is out there, I now have an idea where to start, at first I was clueless but now thanks to the forum I am learning a lot.

I will have a look to see where my local support group is, as I would be interested in going along.

Thank you for the information.

Take Care and Best wishes

Beatrice


#8

Hi Mara,

Thank you so much for all the information, I will have a look at the links and take it from there.

I  feel a lot better knowing that there is help and support out there and I now know how to access it.

 

Thanks again

Best Wishes

Beatrice