Newly diagnosed


#1

Hi

I was diagnosed on 21 October and to be honest I really don't know how I feel - on one hand it is relief that there is an explanation for how bad I have been feeling and then on the other hand I feel frightened, angry and depressed all at the same time.

When I was told that I have PD I just felt shocked and didn't know what to ask - of course now it has sank in I find I have lots of questions but unfortunately do not see my consultant again for four months, there is a specialist PD nurse but it will be approx six weeks before I see her, the consultant is sorting that out.  I would just really appreciate any guidelines on when the medication will start to ease my symptoms, I have been prescribed Madapor three times a day and was just wondering how long it takes before you notice a difference in your symptoms - the stiffness and pain, fatigue etc, what you can do now to help yourself with all the conflicting feelings, all the financial worry of not being able or indeed feeling up to going to work (if you don't go you don't get paid).

I guess I am just feeling very lost and confused as I don't really know much about PD so any help or advice anyone can give me would be really great.

 

Thanks

Joy


#2

Joy, 

Welcome to the forum. I was diagnosed almost 9 years ago and I keenly remember feeling the way you do now. It is a terrible feeling but I hope you can draw some comfort and support from the fact that this forum is full of people just like you and me. You can ask anything here and will get an answer from someone who has experienced the same thing. 

You asked about medication - there is a range of different medication available for Parkinson's and Madopar is a very common one. When you first start on meds it can take a little while to find the best drug for you and the best dose. When you find the right dose you can expect to feel the effects within a couple of weeks. 

Just by coming here you have already started to do the best thing you can do to help yourself. There are Parkinson's support groups all around the UK and there are people there you can talk to. The Parkinson's UK helpline (number at the top of the page) is a great source of help - the advisors there can help you find local groups and other sources of help. This website has a wealth of information on all aspects of life with Parkinson's. If you find that daunting (like I did when I was diagnosed) then the helpline team can point you towards the most useful information. 

These two may help to start with

http://www.parkinsons.org.uk/content/parkinsons-and-you-booklet

http://www.parkinsons.org.uk/content/employment-and-parkinsons-booklet

I hope that helps a little. Please keep posting and let us know how you get on

Elegant Fowl 


#3

Hi Elegant Fowl

 

Thanks for replying so quickly.  It is good to know that I am not alone in feeling the way I do - also having a hard job trying to motivate myself and carry on going to work,doing all the things I normally do at the moment but not sleeping too great either so that is probably not helping.  

Not noticed any difference with the medication at the moment but guess it is early days and it will take time. Going to see my GP next week so hopefully he will be able to answer some of my questions.

Really appreciate the links re the booklets, very helpful and informative - hopefully the more I know the better I will feel about everything.

Many thanks once again for replying to me.

Joy


#4

Well after reading various posts on the forum I am not sure now how the consultant reached his decision that I have PD.  When I saw him he only did a few tests - asked me to walk and finger tapping, also had to hold my arms out to see if tremor disappeared - he then remarked it was a resting tremor, asked a few question regarding how I was feeling and then told me I had PD and he would organise a mri and put me in touch with a parkinsons nurse.   He also wrote out a perscription fro Madapor and he will see me again in Feb 2014.  As he didn't do many tests at all before reaching his conclusion I am just not sure how positive he was in his diagnosis or am I in denial???  Could it be something else???


#5

Hello JB

Welcome to the Forum.  I don`t know when you can expect the medication to kick in but I would like to ask you to keep a note of when you should hear from the PD nurse.  We were told that we would be referred and then we were forgotten.  I wouldn`t like that to happen to you.  Chase them up if no appointment seems forthcoming. 

Hope you feel better soon.

Hatknitter


#6

Hi Hatknitter

Thanks for your reply - I have just received my appointment with the PD nurse for 2nd December so writing down all my questions!!!

Joy


#7

Hi JB

Well, consultants have been known to be wrong. And specialists have been known to find their specialism in every patient. And PD, because it presents differently in different people, is known to be difficult to diagnose. And there are no clinical tests (you can't diagnose it with a blood test, say).

But, yes, my neuro did about the same no and type of of tests before pronouncing I'd got PD. I was probably quite relieved, really, it wasn't something worse - tho like you a little startled at the promptness of dx. Actually, I think this forum sees more posts remarking how *long* it's taken to dx PD than how short: there's no pleasing us!

Thre seems to be a good correlation between dx and alleviation of symptoms on taking meds. In other words, you have PD if it is alleviated by drugs designed to alleviate the symptoms of PD . . . (Another test I'll swear neuros use is - does the PD nurse say it's PD? Well it must be then!)

Semele


#8

Hi JB

 

Same here went to see my neuro in August this year he did a few tests like your neuro,   saw i had a resting tremor , checked my arms and shoulders there was cogwheel rigidity  and did the finger tapping thing and walking and told me it  was more than likely  had PD , , i was given a mri scan  and told that if there is a positive results from the meds then its definately PD  but in the interim since seeing my neuro my mother has also been diagnosed with PD although she is more advanced than me ,   so i guess the positive response to the drugs and my mothers diagnosis will rubber stamp my diagnosis  when i go see the neuro next week , i was told i would be seeing a PD nurse but has yet have not seen her she has a long waiting list so i am told  although i have a good support from OT'S and Physiotherapists ,when the neuro told me it was PD i just sat there and said nothing  he asked if i understood what he had told me , of course i did but as you said at the time you need time for things to sink in i have a mountain of questions  for him next week .

I felt exactly the same when i was told it was PD , i went through all the emotions you stated , depressed, scared , worried about the future , why me etc etc i felt like i was on a emotional roller coaster , one minute it felt like i was accepting things then next i was in tears but there is a lot of support available on this forum and through Parkinson's uk  i found that finding out as much as i could about PD helped me to understand what it was and it helped me to come to terms with the diagnosis

Hope you feel better soon Joy


#9

Hello from the Canadian prairies where we are on the verge of the joys of winter. 

I was diagnosed with tremor dominant PD about 3 years ago.  That neuro did one test.  He told me to rest my hands on my lap and count down by 7's from 100.  My hand  was trembling by the end and he simply said "early stage parkinson's, and he was right, I had PD!  He told me he would not put me on medication because I was only in the initial stages of the problem.  I solved that little dilemma by going to another neuro who immediately put me on the maximum daily dose of amantadine and half daily dose of mirapex.  I was lucky, within a couple of days, I was free of the tremor and since then I have lived a  relatively normal life (touch wood).  I was also told that most victims take longer to respond to the drugs: so have patience and you should see an improvement soon.  And, believe me, PD is not the monster you might be imagining.  We can all live without it,  but we learn to adapt. 

I have found that exercise and the avoidance of stress keeps the symptoms at bay.  Don't do what I do.  I am a fan of crime drama shows such as The Killing and Blacklist.  I should avoid them because they are very stressful to me and my poor right hand takes the brunt of it, jumping around like the proverbial mexican jumping bean.  From now on, Mary Poppins is as stressful a movie as I am going to watch.  (If you believe that, I have a bridge in Brooklyn for sale - cheap).

My journey with PD can be found on my blog at www.wpgchap.blogspot.ca.  It is where I go to laugh about the disease and moan about the disease.  A little of both.

Good luck and best wishes.