Friendship can come out of being dx with PD


#1

I have had an article wrote about me by a member of the Bristol support group I can honestly say It had me close to tears as the article is very complimentary. This will at first go in the Bristol branch news letter there in after I will copy it on to this forum.

When I was dx almost three years ago if someone had suggested to me that having this condition would find me some very special friends such as the author of the article I would have said don't be ridiculous. But I now know this to be true, we met at my branch in Lincoln and now we are very close friends she an ex school teacher and me the school girl from hell (I hated school with a vengeance) I freely admit to being the biggest pain in the butt in both my secondary schools so who would have though that over 30 years later I would find the deepest respect for a ex teacher and all this has come about because we both have the bad luck to be dx with pd.

I will post as said for all who chose to to read this post as it proves as we all grow older and hopefully wiser we can all grow and learn.

Happy new year to all of you.


#2

As promised This is Dawn's Article.

What’s it like for members elsewhere in the country? . . . Where’s Betty Blue?                         By Dawn May Do you ever explore the Parkinson’s U.K. website?  Have you ever been on the “forum?”  Must say, it’s a bit . .  lively. And it feels very raw, with desperate pleas from fellow People with Parkinson’s and other PwPs trying to advise them. There is one voice which rings out above the rest.That of Betty Blue.  She is compassionate, comforting and . . .  well . . . cool. 
I first met her when I was in Lincoln visiting my sick father and I had earlier contacted the Lincoln branch of PUK, offering to come and talk about my children’s books. Rather scarily, they accepted straight away.  So now I found myself standing in front of a large audience of expectant PwPs, with a pile of books on the table beside me and very wobbly legs.  
At that time, I was very emotional about my diagnosis, about how I was going to fight back and about my grandson Luca, who definitely wasn’t going to see me as a fragile and sick old lady, but as a normal, energetic Granny. So, inevitably, as I began my talk, those waves of emotion swept over me and all I could do was swallow hard and let the tears flow until I could compose myself again. 
Karen, her real name, was sitting at the front. She came up out of her chair, stick in hand, touched my arm and stood beside me for the rest of the talk. Just that little act of kindness and solidarity made it all seem less daunting. And so it has been since. 
Karen organised school visits for me every time I went to Lincoln, where we both went to talk about Parkinson’s to junior school children. Their interest and enthusiasm were overwhelming. Often pupils said to us “People knew about it 200 years ago and still there isn’t a cure? Don’t worry, Miss. I will find a cure for you”. Oh, the optimism of youth! 
Karen is only 50. She is a wild child, changing her hair colour every time I see her, mad about her nails, making crazy jewellery to sell in aid of PUK *- jewellery more muted and discreet for me, respectful of the 13 years I have over her - oh, and she is also “a biker chick”.  She and her husband ride a Triumph Bonneville T100 bike, attend rallies all over the country and, most recently, participated in a “Santa Run” raising funds for underprivileged children in the Lincoln area and delivering presents.  http://www.lincolnshireecho.co.uk/pictures/Halfway-Heroes-M-C-C-Christmas-ToyRun-Gallery/pictures-28397429-detail/pictures.html 
I missed the Bristol branch Christmas lunch, because of another visit to Lincoln hospital, but guess who came to my rescue? No lunch? No problem! A spare ticket for the Lincoln branch lunch, which happened to be on the following Monday, appeared without fuss. 
We don’t talk politics. I don’t do disco. I have never sat pillion on a motorbike, let alone on a vintage bike like hers. My nails are short and stubby, my make-up … “natural”. My hair colour stays more or less the same . . . . But do these differences matter? What is a “friend?”  Karen, you are a gem and I am so grateful to you for your kindness and your friendship. 
Oh, and by the way, the Christmas lunch at The Bentley was a magnificent affair, chandeliers, beautifully decorated tables, many guests dressed in evening dress - well, Karen was! In a home made “pashmina” she called it, but more of a full length robe really, in Parkinson’s UK cyan blue, with hair dyed blue to match! No one took photos, it would seem. What a pity. But you will get a taste of who Betty Blue is from these photos. So a very big thank you to you, Karen, and to the Lincoln branch for making me feel so welcome.  I sincerely hope 2016 goes well, for all of us.      * for Karen’s jewellery, please visit her Facebook page “Exclusive Hand Made Jewellery.” 


#3

What a lovely article. You obviously care a lot for people and your support is appreciated.  x


#4

I do Twinks I have always been a big softy but others tell me I give a pretty hard look at times and it makes them very wary, I don't let people see that often, being raised by my violent drunken farther I have a wall around me but when I care for someone in a none sexual relationship, I have what I call my chosen sisters and brothers, this title does not get handed out without a lot of forethought, As I have been fooled before. But Dawn I just knew was special I hated French at school and to find out Dawn was an ex french teacher did rather tickle me and her, I told her on Saturday I loved her ( In french of course )

And In April I am going to Visit her branch in Bristol to talk about our friendship and why I do what I do on this Forum. 
I just do what I can to try and help us all, big soft tart with a soft heart. I don;t admit the tart part.

Take care hun xxx

 


#5

 

Hahaha, I feel as though I know you already. Good to keep a sense of, humour too!

Are you a Cancerian, by any chance?

You mention that you live near Lincoln, in a previous post. Well, I lived in Lincolnshire for 17yrs., but have lived in a village, just outside York, for the past 18yrs. Good northern stock are usually kindhearted!

What a lovely thing to be doing in April. I tried going to my local group, but not a good experience. Felt patronised by the lady giving a dance class, that particular day. Maybe not a fair summary of the group, as I'm sure the people who go are friendly. I tend to do stuff with my 2 friends with PD. Also have lots of friends I socialise with, who don't have PD, as well. Keeping busy and happy are a must, I find.

Keep up the good work and I hope you have more good days than bad.  xx

 

 

 


#6

no hon i am a fire sign a Sagittarius and i am London born and bread xx

 


#7

Today I had a meeting arranged with Karl McCartney Lincoln area MP, this was arranged by Parkinson's UK after a long Journey down from home to London I stupidly lost my train tickets. Got to Victoria Station underground nice chap just let me through gate, I found my good friend Orin at work in Victoria mail line station after a couple of calls my hero Orin comes to my rescue again(this guy is my chosen brother).

He contacted PUK Phil as I suggested he should and not only were return tickets sorted out for me he even walked with me to London central office, at there I was then looked after by Phil ,Tash, and generally the PUK team all together. This visit was arranged due to clause 13 of the work reforms bill intention to reduce benefits for anyone whom is NOT FIT FOR WORK, as it has been suggested that some of us just need a bigger push to get us back to working. Our government including one MP who initials are IDS (tory) think progressive conditions such as pd do get better as some people have been asked the question " so what will you do when you are better" quite frankly I'm not surprised this is as stupid as some so called professionals can get I really hope no one is stupid enough to asked me that as I would possibly hit them talk about insulting. Anyway enough of that I'm getting annoyed now, my thanks to Phil and Tash and PUK team for helping me I was so distressed my distonia kicked in.They and Orin calmed me down gave me a tour and then we went to parliament to see my MP who with his aid seemed to listen here's hoping............

We will find out soon enough I then had the journey home via taxi to Kings X then the train to Lincoln the hubby picking me up as arranged I think it was worth it My thought process was tell my story and explain how concerned I am for all of us in this position Tash said I was great I hope so my tears were genuine even though that was not how I thought I would play this raw emotion is not easy for me to fake so we will wait and see what happens now I will report back as soon as I know.......................................................................

 

BB xxxxxxxxxxxxx


#8

BB

Dawn's words explaining how you simply got up, touched her arm and stood by her, brought a lump to my throat and tears to my eyes.

That's what friends are for, to stand by you and you for them, ones you've just met or those that stay and stay and.....

K

 

 


#9

Thank you for fighting our cause, Karen. We need more people like you!

Ruth  xx


#10

I had two questions asked the other day by someone who knew nothing about parkinsons much like mps who only see and decide on the statistic and not the person or the  humanity.

"Don't you get bored all day", How could i be bored? in all honesty this is as Good as life is likely going to be why wouldn't i be making the most of what is today knowing trmw might not be.

And

"Cant you just go back to work"??, On which day would i ''just go back too work'' and on which hour and how long for or which week or month??, what would i be able too do, what would i be allowed to do,when i finished work because i could no longer do it, if  i ''just go back to work", would their insurance covering me and them be void with all the possible risks? what if i make a mistake and someone gets hurt? from my actions or theirs, what if its not even permissible too bring my medication into work?? which it isn't. and how would it be beneficial for them as a business, should i wear a badge to tick a box saying 'i'm their disabled person' aint it great we've got one!!. like a pet monkey.

Anyway a friend on DX..

I was lucky i already had a friend, but , she took time to find out all about PD before i got to telling her i had it,so i had too explain nothing and have never had too, she knows about as much about PD as any Gp if not more so not just the technical in's and outs of it but 'how i'm feeling' from it I call her my PD expert. how lucky am i to have her friendship!!.


#11

Thanks Kendo & Twinks,

As I have said before I am a big softy although I don't like to show it all the time. And when I care for someone I do so quite deeply.

hope you are all well xx bb 


#12

that was great what you done ,it takes people like you to get answers ,you have got determination and drive thanks bb


#13

I agree wholeheartedly with Gus.  If that MP you spoke to has any understanding of the energy and determination it took for you just to get there for the appointment, he should believe every word you said and act upon it.

Wishing you continued stamina,

J


#14

Just to say Ive bee off thr forum this last few weeks as just had shoulder replacement op. Sorry about typing as trying to do things left handed at mo. Hoping to also start my PD meds once I know they won't clash with painkillers. Nervous about it but know it has to start somewhere.  Sue


#15

Pain killers can but not always react with PD meds I tale Paracetomal 500mg x2 twice daily with a 30mg Dihydrcodeine. Morning and evening This morning when I woke I realised how effective they are as I ran out of the Paracetomal's so have not taken any for two days talk about stiff as a board an my knees were really bad ( coming off my electric bike twice my knees are shot).

I find theses two meds do not interfere with any of my other meds and as I am on pd, hypertension and antihistamines and vertigo tablets in total 34 per day I think that is pretty good going. So I recommend you just double check with either your GP or pharmacy before you commence pd meds.

Take care hun xx

BB. 


#16

Thanks bb,

will do. Have left msg with neuro nurse. on tramadol and paracetamol so thought best to check.dont want to start off with medicine problems.

sue x


#17

hi lexi

                    iam on gabapentin,amitriyline,tramadol,diclofenac & parkinsons meds are sinemet,entacaphone,aziliect .i used to be on paracetomol & co-codomol but became immune to them.so i would say your be ok but all ways worth checking.


#18

Will do gus and thank you for that. Hoping they will ring today!


#19

Hi twinks how are you getting on with the manacua thingeymebob stuff?

BB x


#20

Hi Karen

I've been taking it for almost a week now.....just one capsule a day with a strong cup of green tea, half an hour before breakfast. Thought I'd introduce it slowly and see how I get on. Also taking Elderpryl still.

Not sure if it's doing any good yet. My head feels clearer, but movements are just as slow.

Early days yet I suppose. Hope you're OK? Thanks for asking.

Twinks. x