Being positive about having PD


#1
Dear SNS,

Being unwilling to intrude once again upon your excellent thread re being positive about being diagnosed with Parkinson's Disease , I am replying in yet another thread. I promise you and everybody else that I will refrain from doing so in the future

Your poem was superb.

But I hope that you will appreciate that some of us are far more down the "PD line" than others. Of course I wish everyone diagnosed with any illness/disease/condition to the have the most possible positive attitude.

But , whilst some have enjoyed splendid times post diagnosis, others have had to endure some dreadful times, with which having PD is not particularly helpful.

I wish you all the best for your future

#2
Hi,
I've not visited or posted for quite a while.
It was seeing what you wrote yesterday Abd, that's prompted me.
I'm pleased so many have such a strong attitude to the condition which gets them through.
i'm just demonstrating the other side of the coin.
I hate what PD has done to me. I can't work now. I tried for nearly 3 years, but I'm beaten. There's so much I can't do or plan to do , because of not knowing if i'll be in a fit state to do it.
I am deceiving my family by playing down my symptoms. I can't cope with how they may react. This lack of honesty and the lies I tell, bothers me.
Tonight , I needed help from my husband. I didn't want to ask - I had no choice.
When I said those words that i would love and cherish him , 'In sickness and in health', I don't think I'd seriously thought about what that might eventually mean. Had he ?
I know that from what happened tonight, he is not whom I wish to be cared for by.
Yes, I 'm being blunt. I don't blame him. I shouted at him tonight ' This is going to get worse '
It's an issue I need to plan for. To address what I need to do. I must do it. What positives could anyone possibly find here.
To my friends who post here ( my special ones - I've known a long time, I won't name them, they know) please do not worry about me.
One + I can find is that this Forum is a safe place to deposit our angsts as well as the good things.
Occasionally , the truth is helpful for others to read. Often I read things you've written here and think , yes, I feel like that too.
I've said enough. This will pass.
But Posi.... Park.......
Never.

#3
Good morning
Lorna often wondered where you had gone. I am glad you posted on here but saddened that your not at your best sending you love and hope you visit the forum again, soon.

And AB it is difficult and glad I am not alone with struggling to be positive. There are great people and characters on the forum and some who simply do not post any more. Maybe they are now unable.
Take love PB .

XX

#4
Thank you PB for your understanding.
I am truely sorry if my post appeared to be very negative and caused upset to anybody.
PB, I have often thought about people that I have "met" on the forum over the pest 4 years ( I meant past, but pest will do!) who no longer post. No doubt there as many reasons as people, including as you say the inability or perhaps the disinclination.
For me however it still remains a place to find information that only other pwp can provide, and a safe place for me to be able to say how I am feeling and what I am thinking

#5
My thanks also PB.
'This', has passed. I am grateful there was a place to deposit it, safely.
I'm sure I shall visit again. The source of information for all aspects of the condition is extensive.
I am often amazed at the generosity of those who write about all sorts of difficult issues which arise in their lives. Sometimes , all that's needed ,is to see that someone else has been in the same place as you.
All the best.

#6
Hi,
Nobody should feel bad about posting how they feel.It would make no sense at all to come on here with arms full of pretence.This forum is a vessel to air your honest views,how you really feel at any given time.
I have visited here myself in the past and felt sick with all the positivity.I got to a point were I was self harming,not sleeping,drinking too much and had totally given up.Throwing my life away meant nothing because I didn't feel I had a life.What future is there when you have Parkinsons.Pushing people away who tried to help was easy.
Now I feel entirely different.A change in medication and Anti-depressants and a revised perspective on life has given me hope again.If you are reading Turnip,it certainly is ironic.
Some people want to share that hope,feeling that it may do some good for others struggling on here.Others want to vent their frustration and anger.It is that heady blend and in between that make us all different,plus up and down at any given time.Like you say Lorna,the other side of the coin.I am so grateful to people who were on the positive side of the coin when I was on the negative.They know who they are too.You were one of them Lorna,you always have been.I want people to know this,because posting on here is not the only means of communication.You give so much and ask nothing in return.
Lorna,Annebernadette and Posh bird.You are strong,caring people,caring people tend to get down.Negative is good.We can then appreciate the positive.We all share the same annoying,frustrating condition.This is the place to vent it,don,t ever feel afraid to do so.Everybody here understands.
I am taking my Grand children out for the day now.One of the positives in my life.
Be real,take care
Titan

#7
Hello everyone,

When this forum was first thought of there were concerns from some quarter's including myself to some degree of how it would affect people as it cover's a huge range of time with PD and the many different symptoms and progression people have.
I find it very refreshing and positive that people can say what they want no matter if it's positive or negative if they don't how can we all learn.

My husband and I have always been prepared to be very honest about all the various stages we have been through and we are now in this stage of being separated due to him being in the nursing home which we were hoping would not happen. [u]none is easy[/u] We have many good times but also many very tearful ones.
I have been to see him in the home today where we had a meeting about medication and if there was anything that could help him further, and the answer is don't rock the boat.
The doctor checked his wrist which he damaged playing a bit of rugby all be he spent most of the time on the floor but he had a great time, I took down a boules set to add to the badminton I took the other week. You might say what the hell is he doing in a nursing home but that is where looks and actions deceive as after thirty years of pd he needs 24 hour care I can no longer give him, but his fighting spirit keeps him going even though he makes it very difficult for the carer's sometimes.
Yes we do feel robbed of the life we could have had and still be having and this year it has been very difficult looking back on all our lost years,but we have made the most of our situation and we are the better for it having so many friends in the pd world and out of it who have been very supportive and understanding, I wish I could say the same about some family members but hey ho.
Yes it was difficult when he had to give up work but we managed and so it goes on, where do people find the strength who knows you just do, we all manage in different ways so I hope you all keep up the good fight and sharing is key to this.
My husband will be 69 next week and he is still amazing even if he drives us all mad at times with his making cakes with half the mixture all over his face, so what he is enjoying himself.
best wishes
vivian

#8
Thank you vivian for your sharing with us your story of o/h and his PD. A very moving one at that. Your dear husband Only 69 years old and if not for this cruel disease you could and would, I am sure had many more active years together.

Best wishes to you both from PB x

#9
The whole point of this forum must be to air one's feelings and do it honestly. This is not at all easy but if this forum is to be of any help at all, people must be allowed to be honest. The trouble with this is that honesty can become a byword for anything goes:

"I was just being honest."

I should've thought that we must trust each other and build up a strong relationship in order to do this. The trouble is when we are at most hurting both emotionally and physically is when we most want to post. I am torn between using the post as an outlet and calmly contributing when I am chilled.
Amazingly therefore I commented on wanting to share my Olympic joy which no one replied to and having to share the news about my snapped humerus bone which was immediately replied to.
Maybe I just have to accept human nature for what it is.

#10
Isn't it wonderful tho, that there are always 'strong arms' to pick one up
when that is needed most.
As Titan ended his piece a few days ago,
Take care.
Be real.

#11
I am sorry mrs t but for some reason I am not understanding what your point is?

#12
I haven't posted for quite a while but this thread has given me hope that once again there is a reason to 'join in'. In the main I have found the pwp and carers on this forum helpful, friendly. supportive and honest with their own thoughts and views on PD and its effects on them. I may not have always agreed with them but it has been an insight into the many and varied symptoms that we share.

As has already been commented, it is difficult to remain positive and cheerful all the time and although I am surrounded by a very loving and caring family it has been this forum that I have turned to in the wee small hours always to find someone who understands how and what I am feeling.

Thank you AB for opening this thread (and everyone else who has commented) it is good to have somewhere that I feel comfortable to post my thoughts.

#13
PB,

Good point well made. I don't really think that I know what I want to say, or else I know what I want to say but don't know how to say it. Either way, given the nature of our condition, I think I shall shut up and enjoy the fact that a great many sane and supportive people are prepared to reply at all. Thank you as ever for listening to my painful ranting.

#14
Hello mrs t I do hope your not in to much pain today. x

#15
i try to keep positive now adays,but it can be quite difficult at times,when you having a bad day with pain etc.i found the puk forum has givern me hope and some how a future to,cus ive made many friends on here,and its nice to be able to switch on lap top and some ones always about to chat with.quite a few members have seemed to of disapeared off the forum,which is a huge shame,i just wish they are all ok,but its lovley also to see others returning to the forum.:smile:

#16
:cry:Hi It has been over 1 week since I posted i am possibly the irritating person that was positive, positive, positive and i am still trying to be positive because since my last post i have been in hospital AHH at 53yrs old last Wednesday I became unwell and blacked out no not only blacked out but became so unwell they told my family I had suffered a major Brain Haemorrhage and to fear the worse my Daughters were told by there distraught father and my siblings were also told my sister in Texas was about to try and get a flight to England but after 2 days i was talking and able to move my limbs. Confused well hell yes apparently the Doc's blamed by parky meds and also the stress in my life over the years ?? but I am here 1 week later so as you all read this positive babe was not very positive this week my family went through hell and back, I feel guilty that this s**ty disease has stressed me and my family so yes there is a down side and we all will have them and we will all live them and hopefully write another day.

#17
Morning all and thank you Posh bird,

It is lovely to see such a lot of replies on this thread, it has certainly stimulated a good discussion which is the purpose of the forum.
As everyone has their up's and down's it is good to be able to come on here and know that forum members understand, so that when you are down someone will be there to pick you up.
Yes the condition does put you and family members through the mill and it is quite natural to be angry about it but there are only two choices here and my husband went through the thinking of opting out many years ago but decided to fight the dam thing and he will fight to the end bless him.
Life has been hard but we try to think that at least we had some life before PD and a changed life after, but all the children who don't even get into adulthood are so brave it kind of puts things into prospective I know some people can't think like that but it does make you think.

My husband has made life harder because he has still got all this anger in him instead of trying to come to terms with it which is difficult I know from my own condition, but please pwp's try, as life will be so much better if you can turn a negative into a positive, ( I hope I don't get my head bitten off here I didn't say it was easy)you are all so brave I am sure you are doing your best.

Being able to talk to others in the parky family is so important and the people who really suffer are the ones who feel they can't because it not only affects them it also isolates spouses and we all need to be able to talk. Over the years I was involved with different groups it has saddened me to hear that the person with PD will shut themselves off and won't let their spouses join anything either, and one particular person I met hadn't been out for 6 years and only let his wife out for shopping so she suffered to, how sad is that.
As for carer's I know how difficult it is when you just need to talk and can't get out or even phone a friend for fear of upsetting your O/H so everyone please keep posting whatever you wish and remember we are all in this together.
best wishes
vivian

#18
mommah,well it is great to have you back with us on puk forum,wot a terrible experice you have been through.big hugs to you from me:smile:

#19
I shall seize Fate by the throat; it shall certainly not bend and crush me completely. --
Ludwig van Beethoven.


Upon being told of his impending deafness.

#20
Dear Compost,

I take your point. Full credit to Beethoven, his talent and his courage.

My understanding is that statement that he made refers to his conviciction that music is the one and only way of gaining "higher knowledge""

I rather think that his remarks have something to do with his passion for music and an innate sense of bodily vibration and the sense of satisfaction that accompanies it .

Something that which PWP tend to lose but apparently are able to regain ( I mean in terms of movement, not the higher knowledge thing!)