A quick hello to everyone


#1
I would just like to introduce myself.
I am 44, and all my life i have never really got on with my mum. I was the kinda daughter that was a bit naughty but hey i've grown up now and i,m proud of what i've achieved.
I went to visit my mum & dad last week and was told she had Parkinson's disease, i was brave and told her i guessed she had as she had not been good for a while now and just left in shock.
My grandchildren were born 4 years ago and she could not even bottle feed them cos she couldn't hold the bottle still.
I knew then something was wrong but she was too stubborn to admit it and carried on as though nothing was wrong.
After i was told i went home and i sat and cried and for once in my life i was so scared, i just didn't want to lose my mum even though we have never seen eye to eye and sometimes never spoke from one month to the next it suddenly hit home how much i really do love her and i really don't know what to do or who to talk to.
I just want to know a bit about this disease she has got and i have so many unanswered questions. :-(

#2
A happy hello from a mum to two daughters aged 41 and 44 .

I was diagnosed nearly five years ago and have no intentions of leaving my daughters for a long long time ....

After you recover from the initial shock of realising your mum is not invincible like my daughters did you will realise life goes on ,differently I agree but it does go on......

#3
Welcome Happy lass

I have PD and also a mother of two, a girl who is the eldest 36 and a son 32. No parent can go through life without some disputes with their children. It is life when I was growing up, I pushed the boundaries, girls do.
That does not mean you stop loving your children and your Mum will love you. She may not show it, all I know is a Mothers love for her children is a strong feeling that never dies. And you have children so you will know how that feels. Put those thoughts of the past behind you.
I do hope you are able to spend more time with your mum. Life is to precious for regrets and what might of been.

I wish you and mum all the best wishes regards PB x

#4
Hi Happy Lass,

I'm a mum aged 49 to two daughters age 22 & 20. At times my relationship with my eldest has been 'trying' on occassion for various often valid understandable reasons. We always love each other & regret the blips in the past but have reason for them and sort out/discuss the issues. The one thing i don't want her to do or my other daughter is over compensate just because i have PD. Make sure your mum knows you have always loved her (she probably knows this anyway) despite her diagnosed condition. Have an open & honest conversation about how the past has affected you both, expect tears, embrace hugs and agree to move forward one day at a time together.
There is life after diagnosis, hopefully shared with beautiful grandchildren.:smile:

Best wishes to your renewed bond

Diane

#5
hiya happy lass,love ur choice in forum name:smile::smile:im ali,ive been dx with pd for 11 years,im 42 years old.i have a daughter who is 23 years old,when i was told i had pd me self,i cryed and cryed all the way home from the hospital,so confused ,i new nothing about the disease at all.me and me hubby at the time told beci,and she took it so much beter than me,she put her arms round me said mom,it will be ok,made me a cuppa tea and we had a chat about things.thats wot its all about happy lass,chattin to one another,i no you say u have not had a good relaionship with ur mom,but like you said ur self it shocked you,and u seein things different now.be there for her happy lass as much as you can,talk to one another,havin someone who is there for you is the greatest thing ever,nowin ur loved and will be helped.like i said i had pd for 11 years and im still to this day learnin more things to do with pd,genaly resurch.but you have made the first step here,comin to the forum,cus puk give alot of surport,and there is many friends to be made who will help you.also there is the helpline you can call to find out anymore things that are troubling you or your mom.happy lass,how is your dad taking the news?is he ok:smile:

#6
I am 43 this year.
My mum was diagnosed about 4/5 years ago.
When she first told me it was hard to understand what this meant. It is not like Cancer - do or die.
It did take a while for my mum to accept that she could not refuse help, but always would try to if she could.
Parents can be so independant and to loose that control of your strenght, walking ability is very frightening.
I found it hard, because I just wanted to do everything for her. But I had to learn and wait for her to say she needed me.
Where possible try to go to support groups at the Parkinson's Centre, they really do help and give insight into how things progress or not.
It is not the easiest illness to understand.
I have just made my first contact with the forum, and it does seem as though we are not alone, wether you are a sufferer or a carer.
Try not to get too down.

#7
Hi, this is a short introduction to myself.

I was diagnosed with PD in November 2003. I waited two years before I went onto medication and now I take at various times during the day. Madopar to start with
then Requip and Sinamet Plus.

I carried on working until last September when I retired. I have been able at the moment to carry on with things that I like doing I go horse riding I make cards I have just started bowls.

I did start a new tab Sinamet CR just before I go to bed I tried it for 4 weeks and it through my days out so much that my consultant took me off it.

I found I couldnt do all the things that I do during the day. I would much rather put up with problems at night.

It made me feel very low that I was unable to do my usual things.

Anyway that is just a little bit about me. Would love to hear from anybody.
:grin:

#8
Hello Wye123 and welcome
I applaud your determination to continue working until retirement age , and even more so your ability to enjoy horse riding. I am terrified of the things.
Of course pd with it's unpredictable course means that there are things that we find more difficult and may have to ask for assistance. But I suspect that may be true for all people of any age, any disability. I too mourn for the things I can no longer manage, but on the whole I try to be grateful for the things that I CAN do. Difficult sometimes - but I find it best to not look back (which may after all not have been all that great) or to look to the future (who knows?) Maybe it is best to do enjoy what you are able to in the present?

I wish you all the best

#9
.
Hi, and welcome.

I'm Ray, 61, diagnosed in 2000 when I was aged 50.

The first thing you should do is ensure your mind is on the right track. Those unfamiliar with Parkinson's are understandably frightened, confused and unprepared when the first mention of it enters their lives, initiating fears and confusion never before experienced. Previously well-ordered lives with well-defined plans for the future suddenly threaten to be turned upside down and destined for the shredder.

This does not have to be the case at all. Certainly lives will be changed, and usually not for the better, but with proper medication and neurological advice many years of pleasure remain ahead, and in some cases (e.g. with earlier-than-planned retirement) one's quality of life can improve significantly. Since diagnosis nearly 12 years ago I myself have taken up many new interests, and travelled to many destinations I would previously only have dreamed of.

Next, try to stop yourself (and others) referring to our condition as Parkinson's Disease. You'll probably have noticed that this organisation has dropped that word wherever possible from its name and other references. This is because we believe disease to be a very emotive word which conjures up thoughts of physical and mental deterioration so wildly inaccurate as to be laughable. The word disease can lead to some believing it could be contagious; others may incorrectly infer that it is terminal.

So let's get things straight. Parkinson's is NOT a disease; it is a condition, a disorder or a syndrome. Nor is it contagious. Nor has anyone ever died from it. It is a chemical imbalance in the brain which results in instructions from the brain not being actioned properly, if at all. To the outsider the most visible results of such "neurological disobedience" are movement disorders such as dragging feet, stooping, tremors, poor balance and slurred speech.

Appearances can be deceptive, though, and the observer would be foolish to interpret the blank expression, hanging chin and shakiness as reliable indicators of any reduction in intellectual capabilities whilst these symptoms are apparent. Indeed there have been several occasions when I, aware that my symptoms seemed to be causing strangers some distress, have been able to turn the situation to my advantage (e.g. queue-jumping, preferential seating)!

However that's not to deny the seriousness of Parkinson's and the need to get the medication regime exactly right for the individual. Every single Parkinsonian will need an individually-tailored combination of drugs, which can take years to hone, and even then dosages will need to change as time passes, otherwise their effect will inevitably decrease, making mobility and other functions increasingly difficult and dangerous.

On the brighter side this is an excellent forum you've joined, full of valuable experience and advice, as well as being good for just a simple natter 24x7, or for playing our games and quizzes.

I hope to see you around soon!

Ray.
.

#10
hi my name is michael i,ve had pd for three years now [find my pic on newcastle bike ride]at first it was hard to take in and the tears flowed but there is great people out there esp;parkinsons uk team and without their support and of course my family it would have been more difficult,my motto is do what you can and try not to let pd get you down i dont