Advice for a Newbie ?


#1

Hi everyone, I’m recently diagnosed with PD, and tbh i have no idea what I should do next and I would like some advice.

I only have mild symptoms so far, so obviously want to everything possible to delay more severe symptoms.

I’m only 47, which I believe is quite young to get PD.

Thanks in advance
Steve


#2

Hi im Keith , diagnosed at 52, like you mine is classed as onset, , i have hand tremors, leg shakes and balance but mine only affect my left hand side
The only advice i can give is dont give into your condition it could take along time before condition gets worse, keep to your med , be positive
Some things wont be as easy as they were before but you can still do them and things might take longer but you get them done
NEVER FEEL YOUR ALONE
There is always someone here
We all handle our condition diffrently, you will learn to manage and find you will cope better than you thought
You are among many new friends on here
In the end YOU HAVE PD , BUT PD DOESNT HAVE YOU
There is the free helpline if you need it , but there is also us
Take care my friend
Keith


#3

Hi Steve,
I’ve been detected at 48, and the neurologist did it quite badly (10 min, a Sifrol cure and 73€). The first impression I had was denial. But I took my pils. Then I called my regular doc to support me. I also contacted a local PD association and meet physically other patients. I decided also to educate myself on this affection thanks to training sessions organised by the referenced hospital.
Do not stay on your own, meet other “young” PD patients.
Regarding your professionnal activity, I am not comfortable to help as French laws may drastically be different with UK ones. But I decided very rapidly to inform the medical services as well as my direct manager. I also requested to have the “handicaped employee” status. It’s a protected status.
Finaly, as explained in the previous reply, stay positive, don’t hide the PD, carry on your hobbies and meet others. Medical researches are progressing a lot, I am very close to my neurologist and I am active with my PD.
Hope this helps.


#4

your words do help. It also shows that I am already doing the right things even though this is scaring me silly. The minute I suspected PD I joined a gym to start the exercise, once diagnosed I joined this group, found a local face-2-face group session I can visit and I have started openly discussing with my wife (can’t tell my kids yet as youngest is doing her GCSE and I don’t want her distracted)

I only have a lazy arm, leg tremor, clicking in wrist (all left side) and bit of balance issues. Had sense of smell issues for years, but rest come a month ago. I knew what it was immediately, so faced it head on.

The biggest part that scares me is the unknown, not knowing when more symptoms will hit me, not knowing if I can at least work the next 10 years to at least pay off my mortgage before the worst happens. So I guess I fight each day and do my best to stay positive.

Thank you both.


#5

Hi Steve
SORRY if i ramble on but i have to say a few things
will they help i dont know ?
But it may let you understand me and what this condition can do if you let it

 REMEMBER AT THE END OF IT ALL YOUR STRONGER THAN THE DISEASE
 DONT GIVE IN , FIGHT FOR EVERYTHING THAT IS GOOD ABOUT YOU

The thing i found hard at first was , what happens next when my condition changes
I have spoken to many people with PD and although it is progressive , it doesnt mean instant
Some were diagnosed 10 yrs ago and their symptons have not really got much worse , although it doesnt go away and we have to live with it , in most cases ive been told and read about since my diagnoses its is a very slow progression
My boys are 18 and 23 and when i told them they took it better than i thought , obviously they hate that its happened to me
they threw back at me what i used to say to them which was " DONT worry about things you cant control, AND cross the bridges when you come to them
My movements are a little slower and have to walk with a stick but that doesnt concern me
At the end of the day im still me and still there dad all but a little slower now
I really do understand your hesitency of telling your kids and its not for me or anyone else to tell you what to do in that matter
But kids nowadays are not silly , they would have noticed the diffrence but as like you being scared to tell them they might be afraid to ask
When i first was told and for the first 3 or 4 weeks i put my wife and kids through hell , i was moody , irritable, angry , they walked around on eggshells not wanting to piss me off but most of all the i was the worlds biggest asshole
but they were always there even at times i wanted to be left alone
i lost friends when I told them they acted and treated me like i was contagious but at the same time my true friends stood by me
I will not let this condition take over my life , i will carry it but i will fight it all the way
I can now make jokes about it , i can shake and mix my own paint and make a mean martini shaken not stired , when i make a cup of tea and put sugar in i hold it in my left hand and i dont have to stir it ( we can get away with jokes like that lol )
BUT at the same time it isnt always easy but i will not take it out on the people i care for
What and when you tell your kids is up to you
Believe me they will understand , they wont like it , BUT DONT shut them out
I will always reply to you if you message me
so take care my friend , you are not alone
Keith


#6

Hey Keith, it certainly helps hearing how you have coped. Your boys sound like they have learnt from the best, you must be very proud. I have a 28 & 24 year old daughters and 22 year old son, I know they will take it just like your son’s, be gutted but will encourage me to fight every step of the way. My youngest is 16, she will also be very strong for me, but I can’t tell her until her exams finish in a few weeks. She has worked so hard, she can’t afford any distractions.

As for the humour, my family will have great pleasure in keeping me smiling and of course I’ll be the centre of the jokes as I usually am anyway :slight_smile:

I am surprised some of your friends acted as they did, but I suppose you now know who your real friends are.

Been good talking
Steve


#7

Hi Steve
Yes i have coped but it hasnt always been easy , i dont want to steer you wrong ,
You will get days when you will only want your own company but thats normal
i still do
Family is important so dont hold out too long before telling them after your daughters exams
but if any asked , dont lie , that little tiny lie will eat you up , believe i know
just tell them not to say anything to your youngest but as i said you children know you better than you do
especially after many years when mum says no , so they come and ask dad
been there , done it , got the t-shirt and the bruises lol
PD is only controlling if you let it
IS IT LIFE CHANGING ? YES
IS IT LIFE STOPPING ? NO
Imagine a long journey , then you come to a road heavy in traffic
You make a detour
use that same method in life , what you cant do things as normally , find another way
( god i hope that makes sense lol )
we all adjust in diffrent ways , its trial and error , but thats life in general
Be as positive as you can as often as possible
IM NOT AN EXPERT AT THIS , we both have the same problems and we properly use the same excuses
but one thing im sure of , once your family know the fight will be easier BUT in your time only
Im always on here and various times of day and when insomia kicks in at night too

Take care Steve
Keith


#8

Ste, in addition to Keiths excellent comments, live your life as normal as you can. Don’t change anything because you have PD, it is the name of the condition. As Keith said, be positive and face it head on and make fun of yourself when in company, it is a good ice breaker and puts everyone at ease. With PD everyone has different aspects to go with it like mine are forgetfulness, balance issues and I can be snappy at times. When you tell people of your condition, some will react differently to others, those who disassociate with you aren’t worth bothering with. This is when you know who your true friends are and as Keith mentioned you are among friends on here, we’re all in the same boat and will help you any way we can. In the mean time find out where your nearest Parkinsons Nurse is located and establish a rappor with them, they are very helpful and will allay any fears you might have about the condition and the future.
All the best.

Les


#9

Hello Keith. I don’t post on here very much, but I do read a lot, especially your posts. You are so positive, you boost me up for the day ahead.my biggest issue is my walking, balance , this horrible inner tremor and fatigue. I have always been so active, like a whirlwind, as my daughter in law says. Never been a couch potato, but after a bit of gardening or a trip to the supermarket I just have to sit down I HATE IT. all my friends say how much better I look now I am diagnosed and on medication , just over a year and a half now, I may look better bit I feel like shit, I am a bloody good actress. Sorry to moan, I wanted this to be a positive post.anyway thank you for your inspirational posts
Rosie xx


#10

HI Rosie
further to my private message i sent you

balance problems have crept into me too
but now i walk with a stick just in case
i use it in support of my left leg it has stopped me falling over many times ,
but not all , but it gives me a little more confidence and less worry
TAKE all the compliments you get , its surprising how good they make you feel
on my not so good days i get told i look like crap
so if your told you look good on your not so good days is there any chance
they can come visit me and say i look good too lol

i meant what i said in my private message

take care till next time
Keith


#11

Hi Keith

Thanks once again for the positive comments, as someone who is still getting used to my new life your comments does give me hope and encouragement.

Keep up the good work
Steve


#12

Hi Steve
In truth ( in my eyes ) its not just getting used to our new way of life , its how we can adapt and will adapt to changes that may or may not happen , there is always an answer to every problem
and together we can can find them , just one small victory is 2 fingers up at parkinsons
i know you will over come and take charge again
im no expert in this , i fight the same fight as you everyday we are the same which means we have a bond like nothing else
other than love there is nothing stronger than friendship , my friendship and repect i offer you freely and expect nothing in return
i might not say all the right things but at times you need that little push I WILL HAVE YOUR BACK
we are all stronger than we think we are and hope and encouragment comes from those around us
even a stranger you have never met before
but if i can do one small thing that can help another , wether it be offering my hand when they fall not knowing if i will fall on my ass too as my balance is not as good as it was
but at least they will have company
but at 52 nothing is as good or works as it did
but i wont let it worry me
every VICTORY is still a VICTORY
and every VICTORY is 2 fingers up at parkinsons

lets do it together

take care
hope i havent rambled on
Keith


#13

Hi Keith I must have missed these.
You make it sound so easy.
You are really good with words.Sometimes I feel like crying when reading some of your posts they are so heartfelt and I feel like I get lost in them and then i realise you are talking about some one like me as i have PD
Don’t know if this makes sense or just a load of mumble.
Had to go and see nurse today to get my wound looked at she put a couple of butterfly stiches on as some of the stiches were not looking right.
To go back Friday.
My eyes are constantly closing and like you people think I am tierd.I just can’t believe as have never met any one else like this.
My NEurologist said it is quite rare in PD to get this.

Babs x x x


#14

Hi barbara
wasnt on tonight as i thought my son and girlfriend took me and kay out for a chinesse
didnt get home till 10.40
will be on tomorrow
hope your day was a good one
keith


#15

Lucky you that would have been really nice.

On reading a lot of your posts I think you may have to advertise for a secretary LOL with all the emails you must have.
I had meant to say you have a very handsome family.
Will speak soon .Maybe one day we will be on here at the same time.

Babs x x x


#16

Hi babs
Timing has never been a strong suit for me . Even before this
It makes me feel good that i can help even if only in a small way
Makes it easier to understand myself to
Like everyone else im adapting
But friends here share with me their good days and bad days
And its on their bad days that i hope to make it just a little better
A kind word and understanding works wonders
Pity and and sympathy i dont want and i dont give it either
Keith


#17

Hi Keith

Did I say something wrong.?

If I did I did not realise and for that I apologise.
Friend will be friends.

Babs X


#18

Babs im lost
What am i missing

Dont apologise princess


#19

Hi babs
What did you say
What am i taking offence to
I know you wouldnt say anything horrible

THAT I KNOW

FRIENDS ALWAYS AND LONGER
XXXX


#20

Know it was just your post above about pity and that made me think you were annoyed