Hi new member


#1
Hi everyone,nice to have a site where people understand what you are going through.I was diagnosed in march and put on requip xl didn't do well saw things and had an urge to spend money so was changed to madopar capsules,much better but feel haven't sorted things out completely.I think I need an higher dose but will wait until see consultant.I'm 58 and it came as a shock when told but had a lot of the symtoms for a long time but didn't want to think I had pd,I get down in the dumps because I can't do the things I could without getting tired maybe things will get better( I hope so ) anyway all for first time will be back soon.

#2
Welcome to the forum Wild Bill. Sure you'll find lots of support on hear. I was recently dx in Jan at 45 yrs too but am getting on really well with Requip XL. Sorry to hear it wasn't good for you. Take care. Silverkins.

#3
Hi silverkins,thanks for your reply you were so young when told,I'm glad you get on with requip I had loads of problems.My family seem to be in denial at the moment they don't want toi think their dad who could do anything has problems,I know they will come round.They lost their mum to cacer when they were very young and I think that could be the problem,anyway it's nice to talk to other people with this condition everybody seem's to have different symton's.The thing I do have to remember is making sure if I go out for the day to take my sweeties (lol) with me which I forgot once and paid the price.I don't know if you have up's and down's where you think get on with it then I suddenly think about the future and what it could hold.At the moment I'm trying to find out what I can do and when to stop and rest.Bye for now.

#4
hiya welcome to the forum,im ali been dx 12 years im 43.im afraid ups and downs comes with pd and fatigue as im very sure you are aware of this now,but there is still so much more things you can be doin with your life,its not all doom and gloom at all.ive worked with my pd to become a fund raiser,i concentrate on that alot now and it helps my mind.and im in control so if i get to tired,i rest.some people are still working with pd,depends on them selfs how they cope with things.but if not agin there is reading,garderning,goin to the gym on a doctors programe to help with muc=scles and riderty,etc,and of course so much more depends on wot you like.but the key to it really is good meds and tryin to feel positive,there lot surport here on the forum,and of course the puk help line so plenty of surport and questions you may have to be answered,and of course making friends :smile:

#5
Hi Bill,
Welcome aboard.
I`m sure you`ll get plenty of constructive help and advice from this forum, I certainly have.
I was diagnosed early last year and was put on Madopar, 50mg/12.5 mg x4 daily.
After a week ( hey presto ) I could brush my teeth again.
I still have a slight tremor and stiffness issues but nothing I can`t live with.
I hope this gives you some optimism for the future.
Good luck,
Jacko.

#6
Another welcome to you, Wild Bill!

The diagnosis is sometimes more shocking to loved ones than to the patient. I'm sure in time your family will be able to reach acceptance of the truth, but it does take time. I recall that my husband had to adjust to the idea that I was not going to "grow old gracefully"! My sister shed more tears than I did. But it's important to remember that this disease is not terminal in itself, and it usually moves slowly.

I have had PD about 16 years, was dx over 11 years ago. When you get the right medication or combination of meds, you will probably look and feel more like your usual self. I haven't changed my lifestyle at all yet. Although I do have symptoms, they are still unnoticed by others and not very troublesome to me. So keep up your positive attitude. That plus lots of exercise is the best you can do to fight PD.

Sincere good wishes to you and your family!

#7
Hi Wild Bill, Sorry to hear you trouble with your meds,pleased to hear you are coping better now. I have the inherited type of PD, which I inherited from my late Grandmother. I first showed signs of PD when I was in my teens. I am now 61 and I am doing ok , but I do take 21 tablets every day! But I guess over the years I have got used to my daily regime and I do OK. Naturally some days are bett than other days., but I just keep thinking positive.
Any how, welcome to our forum! Hope to hear from you again sometime!

#8
:grin:
Hello Wild Bill, Madopar served me well from 99 until march this year when I became a member of the DUODOPA CLUB, I had become tolerant of the Madopar Tolcapone twin attack on PD and was suffering, so I was offered DUODOPA and it was
like a miracle it relieved so many of the symptoms ,it was life changing and I consider myself so lucky to have had a FANTASTIC TEAM NTGH, who made it all happen
its not perfect but a improvement of 95% , well it will do me until some bright spark finds a cure which I am sure will be anytime soon, so keep on fighting do not bend to its will, exercise is a must, a good walk is a nice way of keeping your systems ticking over, Im 62 by the way,I am off to my Mothers now its only about 300yds but uphill so its a test coming home is better, but then it always is isn't it.
Kindest Regards fedex:grin:

#9
Hi everyone,I've been to my daughters,see has young baby she watches me like a hawk just in case I drop him.It does help sometimes when you have tremor because as I held him my hand shook and sent him to sleep,Thankyou all for your welcomes and advice and how you deal with pd,I will be glad when dose is sorted out and get back to normal.All for now---- Bill.

#10
Hi Bill
I too am newly diagnosed, 3 weeks ago, and aged 58. I'm on the Re-Quip starter pack and the only negative bit so far is odd days of intense nausea, sweats etc. I can`t see any change in my symptoms as yet but I guess its early days.
I am trying to keep a positive outlook and take control of this monster. I have started a blog too about my continuing journey as a carer with Parkinson's.

http://tjkernow.blogspot.co.uk/2013/06/day-2-of-meds.html?spref=fb


We have lots to learn, but these forums do seem to be a good source of information. I have also found out that the Cornwall branch has a coffee/information morning tomorrow so I'll be getting along there to find out as much as I can.

Keep positive and in touch.

Tony

#11
Hi everyone not been on for a while been unwell.The worst thing I find with pd is when things don't work properly such as Meds you phone pd nurse tell her problem she then says I will inform consultant then you are waiting weeks to receive a letter hopefully telling you to change something for the better.My hospital appointment has been cancelled again to see consultant.will just have to grin and bear it until then Meds are wearing off faster than they were pd nurse said don't increase until hear from consultant,but when you cannot sleep because body aching and stiff and getting spasms cannot wait for it to arrive.I'm on 125mg madopar 3 times day so tempted to take extra one when go to bed,has anybody done this.