New and nervous.


#1

It’s my first time here so I’m feeling a bit nervous.
Had a bad night with little sleep and cramping.
I have been diagnosed with Parkinson’s for about a year and it has changed my life.
I’m not bitter or depressed.
A bit angry if anything .
I think I knew about three years ago but was in denial.
I am male,57,and a sports teacher in Spain,where I have lived for 15 years with my wife and family.
I am looking forward to using this forum.
Hubby


#2

Hi hubby,
Don’t be nervous, just find subjects you’re interested in and join in. You may or may not get a reply but dont worry.
I can understand the anger about diagnosis but we go through all sorts of emotions over time. It must be hard with your work but maybe you can channel some of the anger into exercise. Easier said than done though. Keep fighting!


#3

Thanks Divine 1.
I’m really hoping this will help me and I may be able to help others.
For 40+ years I have been an athlete. Now my body is letting me down.
It’s not easy to deal with.
My bosses aren’t very sympathetic and I could easily lose my job.
I’ve always been a fighter,but with this illness what is there to win?


#4

Hi again,
I understand the body letting you down. I look in the mirror sometimes and can see the person i was fading away. I feel guilt for bringing this on my family. Not my fault i know but these are thoughts that fo through your head.
BUT on the other hand, a diagnosis like this makes you realise life is short. Cherish every moment with family and friends. Maybe its an incentive to make a change of career, do something different. Im trying to be positive here. I know it’s not always that way but its all I’ve got tonight!


#5

Thanks again Divine 1.
I feel like I’m at war with this disease at the moment.
Today my legs and feet are swollen to double their proper size.
Maybe its the drugs.
I am taking one Azilect.One Miraprexin and three sinemet per day.
Anybody on similar?
I was painting today.
I dropped a tin of hammerite​:grinning::smile:


#6

Hi there You said you were painting maybe you.are doing too much.
As with every move your body is fighting against the PD. Very tiring just in a normal day without doing a lot of activities.
Be Happy my friend and take each day as it comes but most of all enjoy life. :blush:

BabsX


#7

You could be right Babs.
I have never had to slow down before, but I am trying to be as “normal” as possible.
My family are having trouble coming to terms with the illness and expect me to be able to do the same things as I have always done.
I already feel like I have let them down. So I try to carry on as best I can.
I have always excercised vigourously.
I now can’t and I’ve put on a lot of weight.
Unthinkable for me and quite shocking for others who know me
Although it isn’t really me.
I’m different now.
There’s no going back.


#8

Hi Hubby,
Babswood is right, you’re probably doing too much. Exercise is recommended highly for PD but maybe you have to find a different form of exercise. Yoga, boxing, PD warrior movements. Sorry if teaching you to suck eggs! Mediterranean diet is also recommended but you will find your happy medium.
It is a mindshift really for you and your family. The stress of trying to be the same as before cant help your symptoms either.


#9

Sometimes you need to hear things from other people so please keep the advice coming.
I haven’t mentioned up to now that my daughter has split with her partner so she has moved in with us and my 18 month old grandson.
I already have my 87 year old mother in law living with us as well as my wife and son.
My daughter isn’t working and gets no
money from the ex partner.
Normally I would have just taken on more work but my boss has already cut my hours because of the Parkinson’s.
It’s all a bit of a mess.
I know this all sounds a bit self pitying but I would never talk like this in front of my family.
I lost my mum to Alzheimer’s at Christmas which hasn’t helped.


#10

Hi again,
This forum is a good place to vent. There’s always someone with alternative advice.
You certainly have alot on your plate and no wonder your symptoms are all over the place.
I’m certainly not qualified to dish out advice but i would say that maybe a sit down talk with the family might be an idea. Its not easy but sometimes opening up means you can all work through this together.
Actually I probably need to take my own advice there!


#11

It’s good to talk to people who understand


#12

Hi Hubby

Yesterday I actually said to someone oh I’ve put on weight so will need to try to lose it and that person just said to me who cares just enjoy life.Does it actually.really matter. The answer is no.
My bad part of the day is usually about 4 till 7 when I really shake and feel as though I’m frozen to the spot. My family now realise that it’s still me I can hear them. Although most of the time between then my speech is really bad and no one seems to know what I’m saying. It always passes. I realise that further down the line it may not. So for now I live for today. I’m here and I can sit in the living room looking outside to the garden. and all the shoots starting to come through.

I lnow I’ve rambled on so take care x Babs x


#13

hi Babs
i dont know how old you are and i wont even ask
not polite to ask a lady her age
you properly look forever young anyway
unlike me ugly as sin lol
all i will say is cross tomorrows bridges when you get to them
worry about tomorrows when tomorrows come
theres no such thing as tomorrow
every tomorrow becomes today
my stutter is more pronounced now but who cares , i did , but no more
i eventually get to say what i want
i used to be uncomfortable around people i didnt know and hardly talk
but now , what the hell
im not wasting what time i have feeling sorry
or what others think
just be you , thats all you can be

take care young lady
keith


#14

You guys are great.
Already I am feeling like it’s ok to be me.
No going back.
No planning too far forward.
Just living for now.
I’m so glad that I found this forum.


#15

its always good to be yourself
in the end thats all you can be
dont change just to please others
its better to be surrounded by people who see through
our condition
than to change just to fit in
id rather have 2 friends who take me as i am in bad days and good
than pretend to be normal and hide my pd
why should i hide it, its nothing to be ashamed of

take care
keith


#16

Too true Keith!


#17

Hi Keith
What you have written is so true.
(Not that I’m forever young) ha ha .
I am 59 years of age and I am the big 60 this year.
Where oh where has the time gone. I took rheumatoid arthritis when I was 40 and PD when I was 55…
I was told that I will Not see a cure in my life time.
So I will carry on trying to still be me.
Take Care
Babs x


#18

Being you is all i ask of you

Sounds strange but since diagnosed i found friends True friends
Almost as good as a cure that we wont see
I’ll send you my address to send some cake

Take care
Keith xx