Newly diagnosed


#1
Hi - newly diagnosed, floored - devastated - desperate .... anyone offer any advice - was given script for meds (won't be taking them) - ''see you in 3 months'' - ''will book you in for a DAT scan'' ............. is that it!!!! no advice, info or support!

#2
Hi It's not the end of the world!!! You have come to the right place.There are many of us in the same situation.

Medication does help, but the one important factor is to think positive. Easier said than done but believe me you can do it!!!

Get to know your foe - there are many good books on PD and a wealth of information on the internet.

If in doubt ask - I've yet to see a question on the forum unanswered

Take care and remember "Always look on the bright side of life!" :grin:

#3
your reply meant the world - feel so alone - can you recommend any books

#4
zatopek (great name) is right. completely.
i was diagnosed 4 years ago, had it for at lest 6 years before. still working, learning new skills, emigrated to australia. - life isnt over, it just different.
it does get difficult later on - BUT there are enormous strides being made in research which i firmly believe will mean you will lead a reasonably normal life for the rest of your natural. if not, i will eat my hat, corks and all.
take the meds - some people prefer not to but i believe the most important thing is attitude and good meds help maintain that.
the nhs can't help in day to day life - but we can. there will always be someone to answer you questions or to just have a chat.
you will go through the normal phases of readjusting to a major change - it may take several years. but the main variable is your own self - let yourself mourn, but expect to come out of it and you will.

#5
Michael J Fox - Lucky Man and a second book
Living WIth Parkinsons Disease - Ray J Paul
Understanding Parkinsons Disease - Tony Schapira
Plus the many publications on this website

The best start point a book reviewed in the current Parkinsons Magazine - so good I have loaned it to a friend and can't remember the title ( I'm sure someone will help to identify it

Don't get depressed reading what may be ahead of you. We may not be able to cure it but I firmly believed we can delay the progress of symptoms and manage many of them!

Off to do my daily exercise routine - thoroughly recommend it but that's another story!!

Take care

#6
hiya welcome to puk forum,im ali been dx 12 years,im 43 years old:smile:im afraid when you go to see your neuroligist we have 10 mins top,and everything can not be spoke about with in that time.you would have so many questions to be asked.there should be a pd nure in your area,they are extremly good to have,they help you,and at the phone anytime for you to speak,or meet up with.if you dont no if there is one in your area if you give puk help line a call they will point you in the rite direction.also there are trained staff there as well to answer and help you out at anytime.then this forum,agin anything you wont to no people will be here for you.ino it easy to say try keep positive,but its much beter if you can be,try not to look in to the futre to much cus there is resurch goin on all the time and things change for the beter.please keep in touch with us ,good luck :smile:

#7
hi moonandstars

welcome to the forum, what symptoms do you have if you feel you can cope without meds for a while then its your choice, i was dx 10yrs ago but did,nt start the meds for 4 years my pd nurse did,nt think i needed them but when the time was right i new, its not all doom and gloom although i have had to give up my job i am still able to do most things i go to tai chi once a week and hydrotherapy once a week i still drive pd affects everyone differently and some symptoms might be similar they are not the same, i know its a shock to here that you have pd but you will learn to adapt and live with it you are still the same person only slower, if you have any worries just ask we will all be glad to help if we can, sue.

#8
Hello Moonandstars: it is really not as bad as it seems. My diagnosis was a little over 2 years ago but with the help of medications (mirapex & amantadine), most of my life is symptom free. I have to admit when a symptom does appear, it can be quite dramatic (see my blog www.wpgchap.blogspot.ca for my journey from a few months after dx to now). Whether or not to start medicine right away is a personal decision. I have one neuro who said wait and two others who said start immediately. I chose to start immediately because I wanted a quality to my life which now, thankfully, is rather normal. I don't worry about my future because there is little I can do about it but I agree with Turnip - advances are being made which should assure us of a good life. Remain optimistic and exercise and you will notice a difference both mentally and physically. Best wishes from Canada.

#9
has helped getting replies and advice from you guys and really appreciate it- am absolutely terrified of taking the meds .....have read of awful side effects - have been prescribed Ragasiline - my symptons are bit of a funny walk, slight tremor, mild rigidity in foremarms making work difficult... had for 18 months - 2 years..... Neuro says start now before DAT scan, gp says wait as meds will make me more rigid ......reading the side effects makes me think little point in taking the meds - what will happen if I don't take any meds at all??.......... at a loss what to do and fear for the future

#10
Hi moonandstars

Everyone’s different! I was dx six months ago - but like many, had symptoms for at least three years before then. Although she described my symptoms as “mild” my neuro just assumed I’d be taking meds, now upped to 1.25mg Pramipexole x3 a day. And I supposed I just assumed I’d take them.

Like you, I was disturbed by the possible side-effects. But not everyone gets some or any of them. And the balance is - how well can you cope without them? I’d got to the end of my tether - could hardly type, poor walk, impossible to write (let alone the non-motor symptom): I was having difficulty in doing my job. On the meds nothing’s perfect, but everything is much better.

I think Turnip once said: can you do everything you need to and most of what you want to? If you can, you may feel you can hold off the meds if not, maybe you should think of taking them.

Hope this helps!

#11
Another welcome to you, moonandstars!
You are getting good advice from forum members already, but I thought I'd add my experience as well. I have had PD 15 years and still have no more than an occasionally awkward gait, some trouble using cutlery, and a rare tremor in the right hand. Strangers do not even guess I have the disease, and I do not feel that my life has really changed. I still hike and play the piano, for example.

Yet at the time of my diagnosis I was just as shocked and dismayed as you are feeling now, especially when one neurologist I saw (idiot!) told me I'd be in a wheelchair in less than 10 years. Give yourself time, and acceptance will come. With it, I hope you have a determination to work against PD's progress. I think, as others have said, that a positive attitude and regular exercise are just as important as meds.

Regarding rasagiline, though, I am very glad I started taking it when it first came on the market, because I credit it with delaying my symptoms so many years. I held off taking any meds until my symptoms were getting bothersome; then Mirapex (pramipexole) reversed them within a month or two. Rasagiline came along at a later date.

I wish you peace of mind and good luck dealing with this new challenge! J

#12
thank you for advice re starting meds or not - must admit and absolutely petrified - was told it was a double edged sword ..... leave the meds and don't suffer the side effects but the downside would not be able to retain the dopamine as long or take the meds and suffer the side effects. Those side effects am particularly scared off are the involuntary movements and impulsive, compulsive behaviour - just wish this would all just go away :( :( :(

#13
J of Grey Cottage -- have just read your post and am encouraged somewhat -thank you - i could tolerate my current funny walk, mild tremor and inability to do my job - i couldn't a head tremor, compulsive behaviour and involuntary movements - the last two being caused by the meds !! I hope i am lucky and it progresses slowly - my grandchild is only 6 mths - I so wanted to enjoy her and babysit her - hopefully i can.

#14
moonandstars,
Surely you will be able to enjoy your role as grandmother. I was diagnosed in 2002, about four years after symptoms began. The date of diagnosis was one month before my son's wedding! So I only shared the news with my husband, mother, and sister until after all the festivities. What a mood spoiler that could have been! But now, 11 years later, I am still able to babysit my grandchildren, a boy nearly 6 years and a girl who will be a year old in April. In fact, earlier this month I took their whole family to Disneyland and enjoyed all the wild rides with them!

When I first started meds, my greatest fear was also dyskinesia. I know every case of PD is different, but in my case I have had virtually no side effects. Mirapex (pramipexole) was the first drug I took. It reversed all my developing symptoms almost to a normal level and gave me no side effects. Then I began on Amantadine to delay the disease (though there is some question, I understand, as to whether it works); it's a fairly benign med -- again, no side effects. When rasagiline came on the market, my doctor started me on 1.0 mg. of Azilect per day. I experienced some dizziness, so we cut back to 0.5 mg., where I have stayed ever since. Over the years, as symptoms broke through, we increased my dosage of Mirapex. Now I take a maximum dosage of 6.0 mg. per day and have no side effects except swollen ankles in hot weather. In 2011 I began on a small dose of Sinemet. This is the one that can cause dyskinesia or involuntary movement. So far, I have noticed no side effects whatsoever.

One of my doctors advised me not to be alarmed at the listed side effects. For one thing, the lists of side effects on OTC drugs can be as intimidating. For another, he said that many of the side effects recorded were noted almost exclusively in very elderly patients, and that is not your case. When you read more detailed information on the testing of PD drugs, you realize that the odds are really in your favor. Again, every case is different, yet I think you'll know when you are ready to begin treatment. I held off quite a while just on the general principle that I like to put as little medication in my body as I feel I can.

Keep smiling! Your fears will subside. J

#15
Hi moon&stars and welcome.

Just my opinion but I think that postponing meds, unless your quality of life is affected, is he best option. In hindsight,15 years ago we would have done the same but, at the time, thought that we were doing the right thing by accepting expert opinion.............no comment on that.

I have averaged out the age on this thread for how long people have been diagnosed and it works out at 7 and a half years, with anything from 6 months to 15 years at both extremes of the range.

From our experience I would suggest that meds are very effective for quite a few years, 10 or more, but then other complications may arise as it's not only visible and external muscles that are affected, internal muscles are also adversely affected, as we know to our cost.

So, where are the posts that say that P affects people at different rates and that nobody knows how long you can function as you used to???

I have just come onto the forum to switch off from the 24/7 aspect of caring. I have now put my OH's meds into 2 seperate containers for them, filled a glass wi th water and am waiting for the call to get them into their night clothes and bed; yesterday when we had a local PUK group fund raising event I had to help them dress.

So moon&stars

The reality of 15 years down the line from diagnosis can be very different for any one of us.

Maybe you didn't want to know this but, as per a recent, far more distressing thread, I believe in saying it as it is,for us, at the risk of Admin, intervening again for my outspoken poats.

#16
Hello Moonandstars,

I am new here, too, although I've been diagnosed - gosh! - nine years now but I have clearly had Parky's longer than that. I told my story (somewhat lengthy and self-indulgent maybe) in Meet and Greet > "I'm with the ostrich" so I won't go over all that again!

I was angry when I was first diagnosed.

My father, whom I loved, respected and admired, had had it and had had an undignified end of life so it was those images that went through my mind.

The neurologist who diagnosed me was also pretty matter-of-fact about it, declaring that I had Parkinson's almost as soon as I sat down! His advice that I should "get done anything I wanted to do sooner rather than later" made it seem all the more a death sentence with an imminent end. I soon came to realise that he is an insufferably arrogant man - even my GP was made to feel honoured to be in his presence! - so I changed neurologists and now have a man I can talk to.

One thing Mr Ego Walksonwater (the neurologist) did say, though, which I remember was: "Show me a room with a couple of dozen Parkinson's patients and I will show you twenty four different illnesses". That, I think, is very true: we are all affected in different ways and to different degrees. I am lucky in that I've not had the tremor, for instance, but I will tell you that the huge difference between my experience and that of my dear old Dad is undoubtedly down to the medication.

I used to regard the taking of any kind of pill as almost a sign of weakness, but in my view it is pointless being brave, pig-headed, arrogant or afraid of the medication on offer for Parky's. I take a fair cocktail of stuff throughout the day (I detail in my post) but let me tell you that with them I am virtually "normal" but without I am a shambling geriatric - I can literally go from being a reasonably fit sixty four year old guy to something more resembling a not too well preserved old fellow in his mid-to-late eighties! I stoop, I shuffle, I dodder, I cannot string a sentence together - but I forget what I was trying to say anyway! - my voice goes thin and reedy, and so on. This happens when I miss a dose but within fifteen minutes or so of taking them I spool back 20 years or so and I am fine again!

I wouldn't be without my meds. I saw how my Father was and I am sure he wouldn't have had such a squalid time of it if he could have had access to the arsenal of drugs available to me today.

I'll tell you something: whilst I wouldn't wish Parky's on anybody, I don't entirely regret contracting it. It has altered my perspective on life: I have become more appreciative of everything around me - especially my two boys and my lovely wife.

Seriously, Moonandstars, let me urge you to come to terms with your diagnosis and for goodness' sake take your medication! Apart from the degree of deliverance from the symptoms they will afford you, there is good evidence that some do seem to slow the progress of the disease (notably Rasagiline, I believe).

If you would like to have a one-to-one conversation then do by all means PM me. I am an engineer and not a psychologist or psychiatrist (never did know the difference!) but I would be very pleased to help anybody if only by sharing experience.

Chin up!

Chris

#17
Hi again, Moonandstars!

I'm sorry - I told you I can forget what I was meaning to say..............:rolling_eyes::flushed:

Re. side effects: haven't had any worth speaking of. I was looking forward to a bit of compulsive gambling or hyper libido....... all I got was a bungee jump and a sports car!

Seriously - a little waggle of the head occasionally and the odd gurn but nothing that outweighs the benefits the meds offer.

Tootle-pip!

Chris

#18
First of all. HI, and WELCOME TO OUR FORUM!

I am Blue Angel and I inherited PD from my late Grandmother whom I loved and adored more than the whole world.

There are 10 other cousins in my generation. but the PD missed my dad's generation, he obviously carried the gene for PD and I am the only one who has developed it.But I would NEVER blame anyone. I was actually diagnosed officially 32 years ago.But, looking back I reckon I had symptoms of PD in my mid to late teens. But it didn't stop being a rowdy teenager ,getting married, or having children.. I have 2 children, now grown up, neither of whom carry the gene responsible for PD. I was 61 years old in January of this year and I am still getting on with my life. I am lucky to have a fantastic husband, my family and many good friends, a lot of whom are on the Forum.

Having had PD for such a long time, I have learn to adapt to certain things. and, just take anything else on board and deal with it when I have to. But it does NOT stop me from enjoying a fairly Full life and I am a very happy person, aren't I ,Turnip! and I guess my advice to you is enjoy the things you can and forget the things you may no longer be able to do in time. I do stress it does not kill you and it does not stop you having a good life I think in time one just gets used to it. But you don't have to like it, but try and be pals!

But TAKE YoUR MEDICATION....IT HELPS!!!!!!! take it from me cos I know. OK, Don't forget Never Fear, Blue Angel is ALWAYS here if you need any help or Advice. as are lots of other people TOO. Lots lof love BA x

#19
god you guys are life savers ... never have i found complete strangers comments and advice so helpful when i have been so low. i know there will be tough times ahead but just to know someone out there understands is a great comfort - thankyou .................. just got date of dat scan today and still there is a little bit of me that thinks ..'they may have got it wrong .....'

#20
moonandstars, I really wish you would get a diagnosis of something trivial and temporary. But remember, if it is confirmed as PD, you have by no means the worst possible diagnosis. This disease is slow-moving for most of us. It gives us time to adjust at each increment in symptoms. Although I know rough times lie ahead for me, right now I am making the most of my relatively healthy years. There will be time enough to endure hardships in the future; I don't want to suffer by anticipation, too. It's a balancing act: planning for the future practically, yet not brooding about it.
Good luck! Lots of us will be thinking of you and waiting to hear your news.