New man joining the Forum


#1
Hiya all! My doctor gave me the diagnosis of Early-Onset PD in 1997, when I was 35-years-old. The impact on my life was immediate and devastating; depression; over-eating, over-drinking and over-spending; separation and divorce by mid-2001; retirement from full-time work in 2004.

Now I take the following meds, which all seem to be delicately balanced with each other and with many external/environmental variables:-

Stalevo 100+25mg 7 or 8 times daily
Amantadine 100mg 3 times daily
Selegiline 1.25mg once daily
Amitriptyline 10mg 3 at night
Madopar 125mg slow release once at night

I also take (with the knowledge of my neuro):-

Iron (low dose) once daily, for RLS
Vitamin C soluble 1000mg once a day
Omeprazole 20mg daily (for a hiatus hernia)

My main reasons for joining the forum are a)to get tips to help my meds work their best, and b)to share some of my own tips and exeriences with others.

I have pretty bad Restless Legs and insomnia, and I suffered enormously with all of the symptoms of Obsessive Compulsive Disorder between 1998 and Dec 2006, when I stumbled upon an article in a magazine and saw the link between Dopamine Agonists (Cabergoline, a PD treatment) and OCD. Nowadays I have a far more stable life with a long-term girlfriend, a car to drive, and money in the bank.

I have two fantastic teenage kids, 14 and 16 (one of each).

Looking forward to making some good relationships here!

8^)

#2
Hi wobla
I've been dx since nov last year and at the moment I don't know wether I'm coming or going.before I got dx I looked on the net and found that I'd got all the symptoms of pd but I'd had them years ago 15-20.im 52 so I'm thinking it's young onset Parkinson's..but I was dx at stage 2 which was a shock.
I'm on .52mg of mirapexin which isn't doing anything.all the best

#3
Hi chap seems you been thru it I am only four yrs since dx and although on DA's not too compulsive yet, I hope life is good to you and you make good friens I'm sure you will:grin:

#4
Hello Wobia
I was dx 2010 age 47 I take 200 stalevo 10 amitrip, neupro patches ,sertreline mostly Im ok apart
from drinking and smoking like a chimney (which was not me b4 pd) I alway liked a drink but hated smoking
I am not sure what to say about your meds but like me I know your kids and girlfriend will keep you positive and focused
My wife and I have a 26 yr son still at home :imp:and a fantastic 11yr Miili who really keeps me going
:grin:

#5
hiya welcome to the forum ,im ali been dx for 11 years,im 42 years old:smile:there is lots of surport on puk,and many freinds to be made.sorry you had to go throuth the compulsive probs with ur meds,i no its not much fun,im goin through probs me self at the mo:disappointed:but as far as your meds are concerded,all i no is wot ive been on and can tell you how i got on with them,the only 2 ive been on is stavelo,which was me very first one,11 years ago,was on it for about 3 years,i remeber they used to make me very constipated which no fun,but apart from that i felt the drug was good enough for me at the time,i had not tryed nothin else so was unaware of other drugs out there,the other one ur on ,im on now at nite time is amitriptyline,i find this drug helps me durinin my sleep.im also on sinemet and mirapexon for my pd.ino imay not be much help to talk of the drugs to you but im sure there is others that no bout them who can help.anyway ,i have one daughter she is 23 in april,dont no were the time has flown by,we more like sisters to one another:smile:it be nice to see more of you around the forum,if u passin the social club,pop in to the diner i make u a cuppa,bit of fun in the there,and chats:wink:

#6
Hi everyone, i am returning to the forum after a two year absence.The last time i posted my mum was very ill, i had also lost my lovely mum-in-law and my dad had terminal cancer. Sadley, my mum died after a long time in hospital and dad died 6 weeks later.Thankyou to members who gave me their good wishes at that time . I have been diagnosed for 12 years and like everyone i have good and bad days.My meds at the moment are Requip xl,Sinemet cr,Sinemet plus,Selegeline, Madopar and as much paracetamol i can take in a day.I am unable to tolerate 3 other parkinsons meds and my consultant has suggested DBS,i am undecided at the moment .Perhaps some input on the forum may help ,hoping to meet some old friends.:grin:

#7
hi smiler,lovley to have you back among freinds:smile:as you can see the forum looks different now than it did 2 years back,things are moving forward,and moderaters have been askin us for any ideas,and also they join in with posts to as well:smile:,just an update:wink:dbs was memntioned to me self by neuro while back,we just talked about it,but me personally got scared of things,as normal:rolling_eyes:and nothin else was mentioned,im waitin for another brain scan in feb ,so who nows wot happins then after:smile:im sure you have done plenty of resurch on dbs smiler,there will be plenty of folk here to give advice and surport to you about it,which i hope it helps you work out wot is best for your self:smile:ive had pd for 11 years,and im 42 years old,i dont no were the time has past.i wish you all the best,and im very very sorry about your family,hugs x:smile:hope to see more of you around the forum x:smile:

#8
Hi ali j,thankyou for the update on the forum,interesting news.Thanks for the hugs everyone should have at least one hug a day.:grin:

#9
here's a hug from me as well ..

#10
Hi johnnie thanks for the hug:smile:i remember you from 2 years ago, is nonname still on the forum ?(hope i am spelling names properly.)i hope pd is treating you all with respect. :smile:

#11
Hello There

My hubby has PD DX 15 years ago although he was getting treated for arthritis for
2 years.
He had DBS and this reduced his meds by half although the DBS was Successful
we were looking for a miracle for cure I guess.
When he was on high doses of Ripinirole he he was gambling really badly also the other things that go with it :frowning:and sadly the demons came back again over the last year and his Ripinirole was reduced again.
He is now on
morning
1 selegiline
2mg ripinirole
2 madapar 125/25 mg
1 metformin (diabetes)
1 frusimide (water retention)

lunch time
2mg ripinirole
2 madapar 125/25
1 sitagliptin (diabetes)

tea time
2mg ripinirole
1 madapar 100/25
1 metformin (diabetes)

bed time
1 stalevo 50mg+12.5mg+200mg
1 simvastatin 40 mg ( high cholesterol )

he is also on salamol and seritide inhalers for asthma
and co codamol for pain when needed
so quite a cocktail of drugs

we are in Scotland and we don't have to pay for or medication so it does help us
a lot although on saying that I think it should apply to all people that have PD

Welcome to the forum I hope it helps you
Heather

#12
Hi Heather,i am interested to know more about DBS.How long ago did your husband have the op,did it work as well as you hoped,how long was his recovery.I have heard the patient can feel pretty awful for the first few weeks .What were the symptoms your husband was hoping to improve by having dbs. I hope you dont mind me asking all these questions Heather ,it is such a big decision to make. My consultant is keen for me to have the op because i am allergic to several parkinsons meds and i also have skin cancer which has a link with l-dopa .I look forward to any info you can give me .:smile:

#13
Hello Smiler
I have sent you a private message as it's a rather a long post hope you don't mind :)
regards heather x:grin: