Newly diagnosed with pd


#1
Hi, I've just been diagnosed with pd, I'm so devestated and bewildered. I have been given the option of two medications : Rasagiline -MAOB or else Ropinirole - Agonist. I'm 56 but am very healthy and athletic, and have developed a tremmor in my left hand. My initial thoughts are to preserve my quality of life and take the medication even if it puts me in an early grave, rather than opt for longevity with lesser quality of life. I guess my pride is showing up. I just feel so crushed at the moment. Bye, Francois.

#2
Hello Francois & welcome,
I can understand your devastation .i am about your age , dx 3 years ago..
Taking pd medication will not lead you to an early grave. It can however take some time to find the right mix and dosage of medication that will suit you. And of course , this will change as your condition changes. Try not to panic. Many people lead active , fullfilling lives with , not despite pd.
I cannot presume to advise you as to whether or not to take medication or which of the ones offered to you would be best. I can only suggest that you take your time, do some research, ask Q's and then make your own informed decision

I wish you all the best

AB

#3
Hello Francois

Try not to make any panic decisions. Depending how much your tremor bothers you, there is no need to start medication immediately on diagnosis. When you do decide to start you may find the meds you first choose don't work well and you have to think again. You will be given a very low dose to start with and a gradual build up to find a level that suits you.

Best of luck and keep posting, there are always people here.

#4
rasagiline (azilect) reduces the metabolising of dopamine so there is more of your own dopamine left.
ropinerole (requip) is a dopamine agonist - a chemical that partially stands in for dopamine.
both have side effects, on the whole ropinerole being potentially more serious (gambling, sex obsession etc).
on the whole ropinerole is more effective, but that varies from person to person
it is posible that you will end up with both but it is usual to try one at a time to check for side-effects and to see if it works.
there is info on these on this site
http://www.parkinsons.org.uk/advice/publications/treatments_and_therapies/drug_treatments_of_parkinsons.aspx

#5
Thank you Annabernadette, Mosie and Turnip for you kind support and information, it's greatly appreciated. :) Francois

#6
My husband has been digonosed for a year. he refuses to take any medication as was told it would only help his tremor. His personality has changed he is in his own world and wont discuss anything. he has lost any feelings for me and daughter and seems angry all the time. My daughter cant wait to move out and i cant see any future of happy times. We have been together for 30 years and he has completly changed towards me

#7
Hi Francois

Chin up Matey. When first told you have pd its a real kick under the belt. I think we can all say that we have been there and have the T Shirt. As time goes by there will be light at the end of the tunnel as they find a right med for you
Donexpect to gdet it correct first time - it takes a while and what suits one will not suit you. My pd staff have told me there is no cure for the tremors, but med can help it a little. One thing that will not change though is the friends and help you will find on the forum
Keep smiling
Chunky

#8
Hi to both of you new to forum I have been dx for 4 yrs and I too refused to take meds for 2 yrs and now take ropinerol my life is still v active I work full time and whilst I fully appreciate the shock (it takes time to pass) we ultimately don't know how strong we can be till we have to be! keep strong and happy!

#9
Hi Chunky, Thanks for your encouragement and advice, they're greatly appreciated. I have seen a very big diffrence in my hand termour based on my stress level. I'm trying to gauge how much time I have left in terms of mobility and work. I'm very fit at present, and am self employed. I guess it differs greatly from person to person. Bye for now, Francois

#10
Hi Francois,

As you have already seen there's nearly always someone just waiting to help you here with queries regarding the PD or work or whatever. Please don't overlook the PD UK helpline. Its free and brilliant. They will help you talk over your options. I've hardly come across anyone for whom the PD dx does not come as a shock unless they are one of the unlucky ones who have had to wait years before the eventual dx of PD has been arrived at in which case they are sometimes relieved to be able to put a name to what has been ailing them.

Best Wishes

#11
Hi JokeyJ

sometimes people, especially men, turn away from others until they have come to accept what has happened to them, which can take a long time (2 or 3 years?).
I don't know if that is the case with your husband but don't give up hope yet of better times ahead. In some ways I found the first year or so are the worst mentally - stressful and fearful - and things are more settled now a few years later.
Try to live as normally as you can and hopefully things will gradually improve.
best wishes
t
ps i wouldn't worry about him not taking medication for pd, as you can see from other replies many people choose to delay it without coming to any harm.

#12
Hi Jockeyj,
Your husbands anger appears to be directed at those who love and surround him, this may be because he has no other avenue to vent it. It is mis-directed at you, it is probably intended to be directed at his PD, but he can't apply it there. He is clearly very distressed about his condition and its implications and appears to be limiting his vision and attention to his own immediate self. I believe that the solution is not a simple nor any easy one, and my heart goes out to you & your family at this time. May I suggest that you try to persevere with gentle and kind and honouring communication, trying to keep loving tenderness as the theme ( despite the hurts that may come back at you, which is hard I know, and calls for on-going forgiveness from you, which is tough on you ). If the communication is allowed to stop & breakdown then the relationship may well follow the sam path. Kind, caring & honouring communication is like the life blood of a relationship, it's that important. May I suggest that you focus your communication on expressing how "you feel" about things, explain how much the anger hurts & up-sets you ( without levelling an accusation, but rather appealing to him to be kind to you all ). Ask him to please try to make you feel happy again. I hope this helps, perhaps marriage counselling may help. Best wishes, Francois.

#13
Hello
I was dignosed 8 years ago. Am on 18 mg of Requip & Azilect now. The Azilect I believe has helped me so far. I know that soon I will have to change drugs but don;t panic- these drugs are there to help you carry on as normal. Its easy to read horror stories about side effects but there are many people who have had no problems with the drugs.Good Luck!
Meg

#14
Hello Jokeyj,

I am so sorry your husband has changed towards you and your daughter, I know how hurtful it is although my husband who has had pd for almost thirty years is different to yours as he was okay for quite some time but wouldn't make an effort to come out for a drive with me but always expected me to be available to him when he wanted to enter his competions for photography or hanging baskets. I spent many years struggling because of my chronic back condition to help him and he just didn't understand that it was really hard for me because of the pain.
He was and still is sometimes a very caring loving man and I know he loves me very much as I do him but it is a very different relationship and a huge almost overwhelming sadness that we have been robbed of the lovely relationship we had but we have to deal with it as best we can.
I hope you can have a talk with the pd nurse together and things improve for you all, I always felt that it would be really helpful to have some kind of counselling for newly diagnosed people as there is so much anger understandably so but it needs to be dealt with in order that you can turn a negative into a postive frame of mind, which in turn will give you a better chance at enjoying the good days as a family.
We have just one son who isn't married although lives in his own house and he was ten when my husband was diagnosed, no matter how hard we have tried to be very independant and encouraged him to get on with his life he is still very close and he and I feel very frustrated at the situation we find ourselves in, because although is in a nursing home now we would have preferred to have been able to keep him home (it was his unreasonable behaviour that caused him to have to go into a home although he did stay at home for 28years so we managed really well)the nursing home is alright in some area's but have a lot to learn about PD and personal care which makes it so difficult for us to see.
I do hope you manage to talk about pd with your husband because you can have many happy years ahead if he can overcome the way he feels now and they will be lost years if he doesn't and you both have a daughter, I do so hope you all talk as my husbands anger has prevented us having that happier life, please get help.
kind regards and best wishes
vivian

#15
Hi Francois,

Welcome to the forum. I am 58 and just dx 1 month ago. Until last year I was a fit and active outdoors person but things went rapidly downhill at the end of the year and I found myself between a rock and a hard place and feeling extremely unwell. I have fought back hard and managed to improve a lot. My feeling when offered meds a month ago was grasp the nettle and live for the day. Personally I would rather have 2 or 3 good years and go out with a bang so to speak than meander on feeling as lousy as I did.
My Neuro put me on Madopar 62.5mg twice a day increasing over 4 weeks to 125mg three times a day. I felt an immediate improvement the next day and am so improved on it that I have decided to stay on 62.5mg three times a day for now.
My life is so much better with the meds that I have no regrets with starting on them.
Hope this is some help to you in making a decision.

Kind Regards

Topsy

#16
Hi Francois. Meds got me hiking in the hills again, when before this walking to the corner shop was daunting. In my 30s so this was a miracle for me. Your exercise will help you keep muscles strong too. Meds are there for a reason - don't be too scared of them, they can be wonderful. Be informed, is all. Good luck.

#17
Hi Topsy & Jo72, Thanks so very much for your kind & helpful messages. I'm beginning to get the better of my emotions and feel so much more encouraged. Today I ordered several books on PD and have been searching the internet ( with adrians kind advice too ) for dietry information for countering PD. My aim is to apply every tool available to overcome and conquor the PD : Med's, exercise, diet, pyschological / emotions, spiritual, friendships / positive feelings and lots of smiles :), & will make plans and goals to be better at everything I do in life, and do anything else that I can think of which will contribute to a good outcome. With such an arsenal, I plan to win, achieve victory, and triumph. My daughter today reminded me that I have a specific problem which I know about today, and I must realise that despite it, if I tackle it positively, I will still have a far better life than millions of others who are out there today, some don't even know they are worse off yet. Got to be grateful for and appreciate all the good things I have, it's a question of maximising the happiness & joy that is available today, and making the best out of today as I can, and within reason make provision for tomorrow. I'm feeling a lot better today, thanks to you all for your support and help, I'm on the mend and I'm setting out to beat PD ! Francois. :)

#18
Hello Francois,

Welcome to the Forum. You say you are athletic and as an ex half marathoner I know you did not get there without determination and a sound PMA.Those traits are essential in living with Parkinson's.

With regard to diet I attended a lecture by Lucille Leader and afterwards bought her excellent book co-written by Dr Geoffrey Leader, titled, Parkinson's Disease
Reducing symptoms with nutrition and drugs. It is printed by Denor Press.

It is well worth seeking out.

#19
PS

I would be interested to know if you have joined a branch and /or a Working Age Group.

#20
Hi Bogman, Thanks for your kind message. I intend attending a local PD meeting in Hull this Sunday, it'll be nice to meet some people who are facing the same issues. I'm interested to know how long you've applied the Dr Geoffrey Leader dietry recommendations, and what your estimation is of its effectiveness.
I have done some basic internet searches, and have begun to include and exclude various things based on what I've read. I'm hoping to avoid the more serious medication by good dietry control and exercise. Have a nice day, cheers, Francois.