The spirit of a forum


#1
Wouldnt do anyone around any harm to answer this question.I wont go first lol x

#2
sorry about that extra i in my thread title lol perhaps a moderator or the powers that would correct pleeezz

#3
This forum's been a valuable source of support to me this last year and provided me with contort when i've been at my lowest and along the way i've had the privilege of meeting some beautiful people. Its opened my eyes so much more to how Parkinson's can affect us all in such varied ways and i believe this is why its important to have somewhere like this to come to share our views and experiences. I believe the moderators have a tough job of keeping us all happy because Parkinson's can make us a moody bunch sometimes and we get a clash of characters but saying that it wouldn't do for us to be the same because it would certainly make the forum a boring place to be. I know the forum is here to support and provide information but i think the humour and banter that is often displayed on this forum adds to its character creating a place where a lot of us are happy to share part of our day. I think a healthy forum should be open to debate but understand respect for others is a big issue and creates problems for the moderators and often puts a stop to many topics which we would like to openly discuss.

In the last year i've been through a roller coaster of experiences and emotions along with many other forum members who i greatly appreciate the support and friendship that they have shown me. I consider this forum an extension of my friendship with fellow parkinson suffers and even my family and friends are aware of many of your names.

THANK YOU EVERYONE - It comforts me to know that we are not alone!

Cutiepie :smile:

#4
:wink:Cutie well said,not ever easy to put into words,cant add to what your saying so honestly and well and thanks for the depth of your content your insights and compassion into our behaviours and impulses is very true
thanks cutie xx

#5
Hello purpleslipper

The main reason I read the forum is for information, gained from personal experience of the many forum members.

I feel a bit isolated sometimes not being able to talk openly about PD. My friends and work colleagues know about me having it, but rarely talk about it, or ask how I am with regard to PD, despite my tremors being obvious. I don't like to mention it too much, for fear of being seen to be "moaning". I thought that once my colleagues were aware (it took me 2 years to tell them), some would take an interest and ask questions, but that generally has not happened.

Therefore this is also the right place to discuss any issues openly, amongst friends. Having said that, I am still in the "getting to know the forum", and "replying to some posts" phase rather than asking questions yet.
I am glad that you are all here though :smile:

Best regards

Paul

#6
I agree the forum should be a place for people to read, learn, pass on experiences and possibly gain new friendships.

As some of you will know I am lucky in that I do not have PD. What I did not know, however, is that I would meet and fall in love with a lovely girl with PD. That relationship is now nearly 3 years'old.

So for someone like me the forum has been an excellent source of knowledge and information. I constantly sought answers so that I could understand what a person with PD was going through and the effect the various forms of medication could have on a person.

I was totally baffled for so long. Some on the forum called my crediblity into question and several were angry that I should even dare to ask questions. Fortunately I have now gained several friends via the forum who have passed on their experiences, knowledge and advice to me.I am so much wiser now than I was just a year or so ago. Knowledge brings with it power and inner contentment and for this I will always be eternally thankful to this forum and its contributors.

The people who have helped me know who they are and I thank them all for their kindness and patience. My relationship with the person with PD remains solid and I will always be available to love and support her for she has provided me with some of the happiest moments of my life.

As far as I am concerned I would have been totally lost without the forum. Long may it continue.

Kindest regards to all my friends and thank you again,

Gower

#7
For me this forum is somewhere that I can aknowledge all the stresses and worries that are currently in my head. We can't tell the children (ex-husband will rejoice as he hates OH), OH cant tell work (threat of redundancy too great at present), we can't tell any but the closest of friends in case kids/ex/work find out. The forum provides me with a place to seek refuge (even just by reading other people's posting and knowing we are not alone). The posts I have written have all been read and people have responded warmly and with support.
It has also given me a great deal of awareness and knowledge in a short space of time although there will always be plenty to learn I'm sure.
For me this forum is a godsend (not that I'm religious!)
Thanks to all who use it.
Carrot

#8
Thanks Pauli for your reply,
I understand those feelings of isolation,im sure most here do also.I wonder by putting up-- the dont want to tell people barrier -- if we perhaps make our symptoms worse and we are damaging ourselves a little more.
It seems to take most of us a year plus to 'come out' and even then more time to feel comfortable with that.
Its percieved still to be an illness old people get,it effects our self esteem,ruins our confidence,and the treatment we have to take to restore funtionality can make us sick.Its little wonder we vent our frustrations at one another on the forum at times.Its a place to observe a great resource of information on anything and everything,use it as is your need.
The issue of medication is a complex one,some meds are better at suppressing specific features of the illness like balance or tremor,has your tremor been helped at all do you feel,stress and discomfit influence majorly to i think.
Public perception is the difficult one when the meds work im fantastic,when they dont its difficult,people dont understand this at all.
Im a drunk or a mad woman,when I jump over my handbag to get moving again,and dissapear into the distance.I confirm there fears. Fear it they do, I have been asked if you can catch it. Hope you continue to get to know the forum and it helps your PD.
BFN and if you need a good moan have one here we all do,after all wehave a lot to deal with day in day out,good luck

#9
Gower love your story,romance and roses,but I have to correct you,lol
your romance is 3yrs young not 3yrs old:smile:

#10
hi,

i have found the foruum to be very helpful. when i was first diagnosed with PD i didn't know a thing about it, so i searched the internet and come by this forum.
my questions were answered, i would like to think i hsve met some nice people who i shall call friends.
the forum is place full of information, especially to those who have just joined, so if i can help i will.
i think i have become a stronger person because of it.

thank you to all of those people who helped me when i first joined.
goldi.....

#11
Although I don't post very often, I too have received support on here and had questions answered.

Than you, long may this continue.

#12
Just been reading through some old posts. I think it's nice to reflect on old posts and see where and how you was at that time in your life and how you are now. Once again forum friends, i'd like to say i'm enjoying your company. I hope people that haven't posted for a while are in good spirits. Best wishes to you all.

QT

#13
I read every page of the old forum before it disappeared. I was after answers to medical questions from people who had experienced the theory I was reading elsewhere. At the time it was invaluable.

#14
Hi, To all.I am a carer to Alan who has mild PDS for last 2 years
His problem is poor co-ordination and slowness.My problem is trying
to be patient.Time now 1.30--he's just getting washed and dressed!
Pleased I've found this page.I am 71,he is 72 and willnot touch a computer At least I've found some understanding people to chat to.

#15
I've just joined the forum although I've had PD for 6 years (or more!!??) Thanks to everyone who takes the time to be supportive, honest and kind!! It's the one place I won't be told ...never mind dear there's probably a cure around the corner........ I know they are only trying to help but it's the one phrase that makes me MMMAAADDD!!!

#16
Hi Kay

Welcome to the forum. I hear your frustration. I'm 42 and have been diagnosed for about 5 yrs but to my knowledge had Parkinson's for probably 11/12 years, maybe more.

I can truly appreciate and understand how frustrating it must be for you, especially to see a disease dictates your day. Parkinson's as you well know is so unpredictable and can sometimes make life complicated and throw our plans out. You mention your husbands had pd for two years and it is mild in the way the symptoms present themselves..... am wondering if he is on any medication and depression may even be influencing his symptoms. Depression can be a dominant feature of parkinson's causing low motivation and mood swings due to the chemical changes in the brain affecting serotonin levels.

I think it would be a good idea to chat with your husbands pd specialist/nurse or GP. If your husband is on medication it probably needs reviewing. Sometimes medication used to treat Parkinson's can cause mood swings, excessive tiredness, depression and make stiffness or tremor worse. Getting the right drug and dosage is vital because if you're not taking strong enough dosage or too much, both can have similar effects. It could also be you husband may need another drug to help the low mood or help the other drug work more effectively. It's trial and error and needs careful monitoring. You could help by keeping a drugs diary(see 'KEEPING A DRUGS DIARY' information sheet via home page, publications)

The pds helpline is very useful and is for anyone's who life's been effected by Parkinson's. You can speak to a trained PD nurse in confidence. The number is on the home page of this site, you can click onto it by choosing home on the site menu bar situated at the top left hand corner of this page. On the home page click on publications and you will see lots of information sheets and booklets which are all available on request from the pds helpline.

Best wishes
Cutiepie:smile:

#17
Hi Kay,

forgot to mention, if your hubby isnt on any medication i think now maybe the time to introduce it. Prior to medication my movement was very slow and so was my mood because your body feels so out of control. Either way your hubby needs his pd reviewing.

Please keep in touch with us, look forward to hearing how both you and your husband are.

Cutiepie