new members

First topic message reminder :

I would like to welcome our new members to PAI Forum...welcome and feel free to ask any questions and Admin, myself or members will do our best to answer or help best we can.

Ems

Welcome Marie, It is nice to see someone new posting, please do come back and hopefully some more will follow.

Jb (John) Like you it is my right side that is effected, with my medication my right hand works perfectly until the meds, wear off, and then I can do nothing with it until the meds, kick in again.

My worst symptom is falling, I started falling backwards and then forwards, it is only recently I have realised that every time I did fall I was rushing or turning around too fast, so now everything is done in slow motion and it has less'end the falls.

LAST FALL !!!!!!!!!! HOPEFULLY !!!

On last friday eve, my 3yr old g/son and I were sitting in my car in the car park in town waiting for his dad. He decided he wanted to sit on my knee behind the steering wheel. As it was a beautiful evening, sun shining, I had my door open, he wanted it closed he reached out but was not able to close it, I reached out grabbed the handle lost my grip on the steering wheel and went head first out the door taking my g/son with me, my head got such a bang off the concrete, my glasses smashed, my face, elbow and knee all cut, TG my g/son didn't even get a scratch.

So here I am now with a black eye, 4 stitches in my eyebrow, a knee like a balloon, trying to see with a pair of glasses that should have been in the bin long ago. feeling sorry for myself, ohhhhhhhhhh what the heck it's good to be alive.

Take care all !!!!!!! Patsy !!!

Thanks for the great introduction Marie. Good luck with the fight. Your exercise program will help you a lot. Hope you jump in again with another post again real soon.

okay, who is next..

Hi everybody,
Apologies for having taken so long to introduce myself but here goes. I'm Marie and like Patsy I'm 66. I moved here to Kilkenny from the UK in 2005 to be near my grandchildren and have not looked back since.I love the Irish way of life and couldn't ask for a better environment to live in. Hubby thinks he's in golf heaven and I just love the pace of life and the wall to wall green. We've only been together for twenty years and between us have four children from our previous marriages. In all we have ten grandchildren, three of whom live here and the rest in the UK (when they're not with us!).

I was diagnosed in 2010 but had all the telltale symptoms of tremor, slowness, clumsiness and stiffness for at least seven years beforehand. Being the blockhead I am, I stubbornly refused to give in to it until I ground to a halt (literally). Even after diagnosis I refused meds for about eight months but thats another story. Suffice to say, things are sort of under control...not sure PD allows control over anything for very long but I try to stay positive. I'd describe myself as a realist-neither over optimistic nor too pessimistic. I reluctantly accept that Mr P is here to stay and what matters from now on is how well I manage the challenges facing me. Fortunately, I have wonderful support from family and friends and at the end of the day I can't ask for more.

I try to keep as active as possible with daily yoga/pilates and walking. I also dabble with Tai-chi, zumba, wii-fit and most recently with LSVT BIG which is fairly new for movement but which has been used successfully for voice control. For all the reasons best known to pwp, I often fail to carry out my grand plans but I am convinced that exercise combined with drugs is my best option at this point in time. Other interests include Bridge and gardening. I also enjoy reading when concentration allows and trips to the theatre if I can stay awake long enough! My grandchildren visit everyday so I get all the real exercise and fun that I need from them. I am blessed.

Apologies once again. I do admire you all for keeping the forum going. I'm sure its difficult when so few respond but that doesn't mean people aren't viewing. We need to keep supporting each other in whatever way we can. This is my first step so I hope this encourages someone else to give it a whirl. Please don't be put off by my ramblings. A couple of sentences or even a one liner can be far more succinct.

Hi Patsy,

You have had PD for awhile. What is your worse symptom? if you don't mind me asking. Mine is the clumsiness and bratikinesia of my right hand. I am a right handed carpenter so it sorta sucks but I do what I can. Sometimes I have to position the hammer in my right hand properly using my left hand.

I'm sorry that you lost your husband. You must really appreciate your sons and grandchildren. That is nice that you can babysit your grandchildren for the working couple. Good daycare is such a treasure for working parents.

Do you think there will be anyone introduce themselves today?

Take care Patsy, fight on!

Love and Best wishes from John

Allow me to introduce myself.

I am Patsy, aged 66, would have been married 43 years this year, sadly my husband passed away 5 years ago.
I have got 3 sons, 6 grandhildren ranging from ages 20 down to 3 yrs. I live on my own, look after my 11 year old g/son during the week until his parents get home from work.

I have PD for 17 years, I can still do everything for myself (slower) with the help of my medication.

I am a very positive person, I will not let PD take over my life, I live for today, I do not dwell on what tomorrow might bring, and just get on with my life.

So here I am 17 years down the road, lets hope it gives all you "young parkers" the courage to fight it every step of the way.

"WE DO HAVE PD, BUT IT DOES NOT HAVE US"

God Bless, everyone, hope ye are on a good day. !!!!!!!!!!!!!!!!!


As John (Jb) said "Next Please" No pushing.!!!!!!!!!!!!

Allow me to introduce myself.

I am John, aged 53, married for 33 yrs. I have been a Parky, dxd Parky that is, for 4 yrs. I thought it mut be a pinched nerve but here I am. I am doing pretty good. Under 50 yrs old in Canada makes you young onset. So here I am. Parkinsons sucks big onions but it is doable I guess. I am a carpenter by trade, but it is becoming more difficult. Our kids are grown and married. I have 3 grandsons. I live in Ontario, which is the centre of the universe I think.

OKay, who is next, no pushing now....

Hey everybody, I've been busy. I'm sure that you are too. Take a minute when you can to introduce yourselves to the forum. jb

Hi and welcome to you bhaoillm. Is the b for bob cause I can't type Bhoaillm everytime. Until corrected, I will call you B cause maybe its Betty. I don't know how to check profiles so you will have to correct me.

As a new one on this forum, feel free to tell us all about yourself, not a requirement of course but it would be nice to read. I myself am from Canada. Many people as you know emigrated from Ireland to Canada years ago. Tomorrow is Canada Day. Its a good holiday to celebrate in a wonderful country. Much of Canada was built with the efforts of your forefathers and foremothers if the latter is a word, why not?

So I will watch for a reply B, have a good day, jb

PS. I sometimes run on at the mouth and so don't take me too seriously, ok. But I am sincere, maybe just different.

Welcome bhaoillm to PAI..

Hi Patsy,
I was on the patch about 5 years ago and it dident agree with me atal. At that time there were 4 different strengths. I started on the lowest after a few days I felt terrible neuro said stay on you will feel better on the next dose and so this continued until I reached the highest dose by this time I couldnt leave the house at the end up I insisted that I come off the patch and that took another 4 weeks. Everyone is different and the patch is probably a lifesaver for many people

Hi Ems, Ann, JB, lucy & Katie
It is so sad, we have 70+ members registered in this forum and only a few contribute. We are all in the same boat here, whether we like it or not, but we must get on with life.
Wouldn't it be nice to hear from others, on how they are coping with PD, what medication they are on, how is the meds, workng for them, etc.etc.
For instance I am on the NEUPRO PATCH, I would love to hear from somebody who is also on it, is it working for them,? are they allergic to it,? do they think it is a nuisance trying to remember it every night. what works for one may not work for others.

Lets start a section for MEDICATION, hopefully someone, somewhere, will tell us about their meds, or ask a question, (they can if they wish tell me to mind my own business).

Hope ye are all on a good day, forget about the bad days.
God Bless, take care.

Patsy !!!!!!!!!!!!!!!!!!!!!!!

Welcome a.john to the forum..feel free to browse or ask questions we're not a bad group here..
Ems

berni wrote:Hi all,
This is the first time have signed up to an online association. I am a 39 year old stay-at-home mother of three.My Dad has PD and I am hoping to contribute soon- chat(also on my Dads behalf). We are involved with our local branch and we hope that the same type of camaraderie as we have found in our brancw is he h will thrive on line.

Hi Berni nice to see somebody new posting.

My name is Patsy I have PD 11 yrs diagnosed, symptoms started 7 yrs previously. With medication I am doing fine, how long has your dad got it, and how is he coping.
Hope to hear some more from you.
And
to the forum.

Hi Ann
I do agree with every thing you have said, we are all here with one thing in common, we know and understand what every one of us is going through. We have our good days and our bad days, but we must get on with life and be "positive"

"I do have PD" but it does not "Have Me".

Ems!!! Here is a Big THANK YOU for a job well done.

Patsy !!!!!!!!!!!

We may not have had anything in common before this but we do now, and in my 14 years with Parkinson's it has been those people with Parkinson's that I have met, either in person or online, many of whom have become friends, that have been of enormous help to me in coping.

I can quite honestly say that it has been a privilege to have been their friends, and I hope that every person joining this forum finds a comfortable spot here, whether in the chat room or on the topic pages or the photo gallery, and gains encouragement from hearing how others cope, because cope we do.

We could well do with some input from carers like Bernie too (Welcome to Bernie and her Dad) - Parkinson's casts a wide net and it covers people with the condition and their families and partners and spouses, and all are welcome to contribute, and encouraged to do so without negativity towards any other member. Ems deserves great praise for the way she has encouraged respect. She deserves our thanks too for the work she does here!

If any of our members are able, why not come to our AGM - in the Rochestown Park Hotel in Cork City, 12 noon on May 28th (Saturday), and come up and say hello!

AND, on our front page, the EPDA Move for Change Survey, an opportunity for you to have your say. Why not go to www.parkinsons.ie and click on the link...

AND AND, have you seen the beautiful pendants and pins that are on sale in the National Offce - Newbridge Silver took our symbol, the Aspen leaf, and made it into a real work of art, and it is on sale at €35 for the pendant and €20 for the pin, in a lovely presentation box. The aspen leaf is our symbol because the leaves of the aspen tree shake, even on a calm day, but its trunk and branches are strong and enduring, and a fitting metaphor for our organisation, branches and members.

Hi Bernie and Bernie's Dad..Wishing you a warm welcome to PAI..
and look forward to hearing from you.
Ems

Hi all,
This is the first time have signed up to an online association. I am a 39 year old stay-at-home mother of three.My Dad has PD and I am hoping to contribute soon- chat(also on my Dads behalf). We are involved with our local branch and we hope that the same type of camaraderie as we have found in our branch will thrive on line.

And another warm welcome to Rathlead..welcome to PAI..
Ems

A warm welcome to Berni.. our new member..Hi Berni our chat room is open from 8 to 10pm feel free to join us..
Em

A warm welcome to Pearl 123..hi pearl feel free to join in our forum chatroom, post topics or browse..

Hi Peral123 you are very welcome to the forum. There is someone in the chatbox most nights if you feel like joining in you would be most welcome

Patsy !!!!!!!!!!!!

Also a warm welcome to Ted..look forward to chatting sometime..
Ems

Katie. Michael, Geraldine, you are all welcome. Many of those who join check us out first before posting, but we are a nice bunch and we will help you if we can. Most of us have Parkinson's for some years but we are still living life and enjoying it. And as Lucy said, the chat room is the place to be between 8pm and 10pm.

Ann

Hi Katie and welcome to the forum there is usually someone here most nights between 8 and 10 so feel free to join us looking forward to chatting to you.

Welcome Katie and sorry for your diagnosis..we're not a bad lot here so feel free to join in..
Em