It,s not just parkinsons,is it


#1
Hi,
Everybody who visits this forum,whether a carer or diagnosed with pd,does so for a variety of reaons.Some are straight forward.Why me,what meds,why is my tremor so bad,why can,t I sleep?.All these questions and more, are surface noise!!.All the Pd knowledge in the world does not change who you are as a person.
Before Parkinsons raises its ugly head,our character,experiences,upbringing,sense of self, have all been firmly fixed.The person we are is almost set in stone.Oh!you can tweak and alter here and there,but some things run much too deep.
All the happy scenarios,all the sad heartbreaks ,the Parkinsons ups and downs .Well they are important,but it is how we perceive ourselves as a person,which truely dictates how we deal with Parkinsons.
Parkinsons is here,reality,never going to go away.So are all the nasty,evil things in life.Coping depends on one's state of mind,because sometimes pd is just the skin on a body already fading and in turmoil.
So how are lines drawn,where does pd end and other problems begin.Was your depression obvious before pd,or did pd cause the depression.Where you obsessive/compulsive way before pd,is then pd blamed off hand.Sex,we all have desires,needs,animal lust.With pd,you can feel time running out,one last grasp at life ,sod it,go for it.How much is this mind set down to pd,how much is due to medication,how much to the crucial nurture and upbringing from babe to adult.The adult yearning and mourning for that lost,but also reflecting on a life left behind.The mistakes the things gone and can,t be changed.
Well it,s everything,sometimes normal rules don,t apply and try as one might,some things,actions, are beyond our control.It,s not just pd that's the issue here,it's the heavy skip load of extras dragged along too.
Some people see Black and White,are quick to judge,criticise,ridicule,pigeon hole.It can,t be done,we are all different,all have trodden different paths and each have their own personal fate.
So what is pd.Parkinsons is that condition that is the catalyst,but dig deeper,sometimes there is a lot more to worry about.
Titan

#2
Dearest Titan
It is impossible to read your post and not see that you are in tremendous pain.
You are right that your character is formed long before Parkinson's arrives as an unwanted guest.
So if you are fixed in your lifelong persona as an honest, kind, loving person who cares for his family,any massive change into a dishonest,self-obsessed,sex-crazed liar must be down to the newcomer --- the condition or the drugs used to treat it.
This happened to my husband who is now off the Dopamine Agonists and back to his previous loving nature,
Please speak to someone. The Parkinson's nurse. the helpline, your GP, you do not have to suffer any longer.
Love GG

#3
Titan,
There is a lot in your post but I think you have summarised a lot of the turmoil I am going through at the moment. You have written it more succinctly than I could - and I have tried several times to get a clear handle on what is happening to me.

My experience supports the idea that you express - that the urges you experience are an innate part of you, they were there before Parkinson's caught up with you. But there is more to it than that.

Life is full of choices and it is in the choices we make that we express ourselves. In recent years I have found myself making different choices than I used to. I think that Parkinsons or the medication for it has caused part of the change.

Golden Girl is right, you can get help, its not easy but it is possible. I hope I have understood at least part of your post.

Elegant Fowl

#4
Hi,
Thanks,I am really sorry.Take everything on board.Discussions,big time tonight.
Appointment tomorrow
appreciate all kind words and advice
Titan x

#5
Dearest Titan, Dont say sorry . You're thoughts are deep. It is my very strong belief that whatever happens to us and whatever we say and do that deep down inside of us all , each person has a very special peaceful potential, it just sometimes gets buried . I will send you lots of loving thoughts tonight. Hope Appointment does something a bit to help tommorow. Let us all know how you are getting on.Please do keep in touch love Sunray

#6
the very very best of luck.
forgive yourself as you would forgive others.
st francis of assisi can be turned into jack the ripper with the wrong medication.
you [u]can[/u] be your old self again

#7
Be strong Titan.
You are in a very bad place but with professional help and love from friends and family you will find your way into the light again.
You have many friends on the forum too who are sending their love.
I am one.
GG
X

#8
I hope Titan that your appointment went well and that it has helped you plan a course for recovery.
Like everyone else that has written here, I wish you well.

Radz

#9
hope all goes well for you titan ,you be in me thoughts x:smile:

#10
Hi,
I suppose Five hours of discussions and Soul searching leave it impossible for me to elaborate deeply or fully on all that was said last night.Indeed some things should remain private and it would be wrong for me to divulge too openly here.
A lot was said,hurtful things,caring things,topics covered spanning all our life.My Wife reiterated what many here have said.Everything was covered,our ups and downs,hopes and dreams,Parkinsons,the future,my stubborness,reality,life,death.
Many home truths were hard to hear.Not just recent,but going back through all our years together.What is clear is,it is so easy for anybody,not only pwp,to get so wrapped up in their own frustrations,that those of their loved ones are so commonly overlooked.
Frustration,hopelessness,anger,sadness and loss.All build up over time in those who care for us with Parkinsons.Not once did my Wife question my love for her.Although,there I was discussing all the negatives and reasons why she should give up on me.Why?,i asked,I am useless,redundant,flawed and empty."Because I Love you"she said.Did I want to hear that?,well I was relieved,so must have.
So we move forward,try to make the best of things.There will be many more ups and downs,but with things discussed with Neuro today and hopefully a clearer outlook.I realise that,for now,the past cannot be changed,I think to much.I also need to wake up and regain some respect from the woman who loves me.The woman who has stood by me,even when I have continuously messed up.
We have not been together 27 years for nothing.That I think, is worth holding on to,a guiding light in the darkness.Yes,I will utter those words,of course,"I love her".
There is nothing like a good talk to clear the air,and to all those who took time to listen and respond to my inner turmoil.Helping me realise many things.I thank you from the bottom of my heart.
Titan x

#11
Dear Titan and Mrs Titan. Fantastic, great, grand, well done - just words on a screen for you to read I know but they are the only way I can express my admiration for you both. Your wife loves you Titan and you love her and that is why, despite all the upheaval that PD has brought into your lives, you have both been able to put your fears and frustrations into words (even the ones nobody likes or wants to hear) and reach an understanding.

Onwards and upwards now , although it won't always be easy. I truely hope you will have many, many more years to add to your 27 years of togetherness.

#12
Hi Titan

Everybody on the community moderation team sends their best wishes. We have been thinking of you and it has been great to see how supportive the community has been during a difficult time for you

regards

#13
hi titan,i would aslo like to add my thoughts,u have both been in me thoughts for the last few weeks,and i feel for both of you as your aware,but i would like to wish you both love and freindship for 2012,this is your year,hold on to it tite,both of you x hugs x:smile:

#14
Hi Titan

I read your blog and it has really affected me and my husband, i`m so pleased you are seeking help and your recent blogs you sound much better. Please don`t give up on your marriage you have been together for a long time. We all have down days but we are all here to listen to and share our thoughts with. I just hope you can come out of that big black hole and celebrate all thats good in your life.

Please take care

we are all here to support you

Big C

#15
Titan, If someone loves you so much that they stay with you for 27 years, you will have done quite a lot to earn this love.

As a carer for my husband I believe he deserves to be looked after by me and althought its not always easy its what I want to do . May be you're wife is the same

Just accept and let someone care for you, maybe you do deserve it

lots and lots love sunray