Being diagnosed with Parkinson’s is like sitting down and eating a big plate of pain. It has a grainy texture that sticks to your teeth and a sour, rotten taste that sometimes makes you vomit on yourself. The pain lays heavy like concrete on your stomach and the emotional wind that erupts from you is constant and powerful.
Parkinson’s has given me the pain but it has also given me a new perspective and a new means to appreciate and deal with life.
dr jonny
My world changed in two days. I had consecutive appointments on Wed and Thurs 2 months ago. I see the Urology consultant on Wed next for his conclusion. There is a faint glimmer of hope on this one. I was given this by J of grey cottage. I'm not building up my hopes, but the respite was useful and very much appreciated. Dealing with PD was enough to start with. I am now rebuilding.
It does focus the mind though. Previously there was always tomorrow. Now its get on with it before its too late.
Things have had to be toned down a bit. With planning and consideration (which my wife excels at) I still do interesting things. I may pay the price the following day, but if that's the way it has to be then so be it.
I have been in pain for 8 years. It has become part of daily life. I refuse to let it dull my sense of humour.
I applaud your attitude. I worked in areas which required a basic knowledge of psychology. One thing was stressed time and again......you will only change if you want change. You display this desire. Consequently you should achieve it. Below are some bullet points for basic requirements.
Security – safe territory and an environment which allows full maturity and development
Attention (to give and receive it) – a form of "mental nutrition"
Sense of autonomy and control – having volition to make responsible choices
Being emotionally connected to others
Feeling part of a wider community
Friendship and intimacy with someone who is accepting of the total person, flaws included
Privacy – opportunity to reflect and consolidate experience
Sense of status within social groupings
Sense of competence and achievement
Meaning and purpose
These relate to a therapy known as Human Givens. We used this at the last place I worked. Previously I worked with a system known as Solution Focused Therapy.
S.F.T. had a novel little trick for self analysis. Scale your self 1-10 with 1 being dreadful 10 being superb.
No one is a 10. You'd have to be the archangel Gabriel.
I'll do it for an example using today....... I rate myself as 5 today on getting up. I needed to think of ways to get to 6 if possible.
What will put me up to 6. Communication helps. Send my wife a silly text to make her smile. Give the kids next door the left over sweets from Halloween. Have a chat to their mum. Have a pint of coffee made with milk and read a while. Listen to some music. I could go on but you get the idea. I'm at 6-7 now. This will drop back tomorrow, but that's another day and I will deal with that when it comes.
In your post you display all the resolve to achieve your goals. If every one did the same we would all be smiling a little more. I know it's not easy but another thing mentioned regularly at our training sessions was.....you can talk yourself up or you can talk yourself down.
If you are in a group of people who are always looking for negatives you will become negative. Like wise the reverse applies.
I have found on here people are generally positive and very supportive. Distractions are provided, humour is used and information shared. It is a good forum.
The mind is a very powerful tool. If we use it correctly and channel it we can make ourselves feel a whole lot better. Not cured, that is beyond medical science at the moment.
We could all go down the bitter road and moan and groan. If we did we would slip into depression.
I love reading a post like yours which says to hell with PD I'm getting on with my life. It's hard road to travel, but we can do it. If we don't no one else will do it for us.
If it was easy everyone would be smiling, being difficult just makes the outcome more valuable and worth the effort. Even if we only get half way, we are half way nearer than we were.
This post is not meant to be patronising. It is based on things I have seen work for others and personal experience.
Good luck Doc you go for it. Orpheus.
Thanks Orpheus. You speak wise words indeed!
We can shape our world by thinking. Parkinson's wants to pretend it knows all the answers but it only knows the negative ones. Its true, thinking can't cure you but it does enable you to have a healthier relationship with your disease, which enables you to live some sort of life alongside PD
dr jonny
Very true Doc.
Hello Doc and Orpheus I enjoy your postings especially now I seem to be losing my way your words seem to steer me away from the Abyss which is becoming larger day by day ,now that I appear to have alienated my family through a completely stupid selfish act I cannot bear this empty feeling I fear it more than death itself surely this the worst weapon in BLACKHEARTS box of tricks, I am pushing back with all my mental strength but I am sliding and need to get a grip.
Kindest Regards Fed
fedexlike --
I've been reading and sometimes responding to your posts ever since I joined this forum. In fact, I think you were one of the first participants to impress me with your way with words and your sense of humour. I am terribly distressed to hear that you feel you are losing the strength to fight the awful depression that PD can cause. I don't know how I can be of help, but I sincerely want to be.
Others have referred to that "empty feeling" that comes when PD gains strength. But yours is probably magnified by the regret of having lost family support. Can it really be too late to appeal to at least one loved one for help? In such a painful time, it might let you regain confidence.
Please post again soon. I'm sure I will not be the only forum member worrying about your well-being.
Fed,
I think I know about the empty feeling. I referred to it as my lost feeling when talking to my nurse. I see my nurse in a couple of weeks again.
This is my way of fighting back......please be aware I only speak for me.....we are all different.....
I am scared to death this thing will alter my personality.
The human being is designed for two courses of action in situations of danger.....fight or flight. This is our heritage from the old days when we were eaten by other animals. Now it's just the wife we have to beware of.
So.......
I adapt this theory to my fear. I choose to fight. I do this in several ways. I force my self to do kind things for my wife and others. They may only be little things....a text.....make a sandwich or a drink for her....make sure she doesn't suffer because I can't do all the things I would like to do. It would be easy to slip into letting her do everything for me, but I refuse to let this be the case.
I write on here. I make it light hearted whenever possible. I try to do this so others might smile. I do not belittle problems. I do try to shrink them, like you would do to a tumour. This is a nasty disease......we are not nasty people.
In the case of your family may I suggest....and it is only a suggestion....apologise unreservedly for the selfish act.....if you get grief, reply with humility, don't sink to the level of the disease. It's the problem, not you.
Get them back onside if at all humanly possible.
Then if you can achieve this, really rage against this sh*t bag of a disease and make a conscious effort to be pleasant with your loved ones. To do this stop and think before acting. Take a little time to reply. Before doing so, say mentally to yourself, this little sh*t is not going to beat me. Sorry about the bad language but you must let your brain know how much you abhor this horrible thing.....choose your own wording.
I'm not going to say this will work, but it does for me most of the time. I am not going to be a nasty person.....I am not......no bl**dy way and that's that, in a nut shell.PD can take a running jump it is not going to beat me. I am nice (the cat next door told me last time I gave her a saucer of milk) and if I keep telling myself that, I will win.
I have already had support on here and some advice which I have taken on board. It's a lifeline Fed.
I'll take anything I can get if it helps.
“The only time you fail is when you fall down and stay down.”(Stephen Richards)
We all fall at some point Fed, getting up is hard, that's why sometimes we might need a little help.
Orpheus
Hello J and Orpheus, after I sent my SOS I decided to try and catch up on my some sleep I quickly almost as soon as I closed my eyes went into a black dreamless void , not scarey , just as I would Imagine deep space would be like , I could hear a voice calling me then a small star appeared becoming closer and closer, I was intensely curious and eager to investigate I was just about to alight upon this strange world ,when the phone awoke me" sods law" I thinks, B2££rd@~s ,I struggled to make my brain cell reactivate and was I glad to hear the voice of my daughter ,all was well and there was no a nimosity , I kept asking if everything was OK and she reassured me it was and appologised for not keeping in touch ,she explained she had been very busy preparing for her new job starting tommorow , she begins training to be a nurse,well to say a huge burden has been lifted is a bit of a understatement the lack of contact plus my ever active Imagination put two and two together and made 10,I cant tell you how much that phone call made to me , so on we go back into the fight re armed and refreshed, thankyou both for your kindness I shall sleep well tonight.
Kindest Regards Fed
Good news, fedex! Thanks for sharing with us your successful comeback. It takes a lot to estrange a daughter from her dear old dad! Best to both of you -- J
