What do you know now that you wish you knew when newly diagnosed?


#1
Um... what it says on the tin.

#2
That you don't have to start medication immediately if your symptoms are mild. Wait a few years and then get more benefit from the Levodopa later in your P journey than you might have got because you started on it straight away, without any consultation as to whether you wanted to go down this route or not, or whether this was the best course of action, long term.

Guess you can see what I mean in our circumstances. Angry? Yes!

#3
If continuing to work is important to you, then you are likely to need to start meds and also shout and scream for help and support in the other areas of your life.

Bear in mind that no-one on their death bed says they wish they had spent more time at work. (Wen you get to know us we are a right cheerful lot on here!)

#4
the importance of a complete stretching routine.


that many emotions are caused by the drugs and are not 'real'.

#5
. . . . . .that your travel your own unique road and we all react differently to meds, and don't have the same symptoms.
. . . . . . .that some things others experience, we may never have a trace of.
So paddle your own canoe, keep moving every day, and smile often. (It keeps the facial muscles mobile ! )

#6
God grant me the serenity to accept the things I cannot change
Courage to change the things I can
And the wisdom to know the difference.


ie Don't waste time fretting about having parkinsons or worrying about the future, spend time on what can be changed

#7
I wish I had known when I was diagnosed 7 years ago that the progression of the condition would be so much slower than I feared...... that I'd still be fit, active and working now...... that this forum existed

welcome to the forum Katesmum

Elegant Fowl

#8
How troubled I was before pd.Now realising how much of my life has been a waste.How everything leading to now is all my fault.There is now nothing I can do but accept.Before,many years before,I may have had a chance to make something worthwhile with my life.I am responsible for a dark Black void,emptiness,hardship and regrets.I just have to exist the best I can now.With Parkinsons the latest in a long line of excuses.So I soul search and make all the right noises,dislike myself intensely.Knowing that deep inside,acknowledging,that nothing ends in nothing and that is all down to me.I have been ruined and in turn ruin everybody who comes into contact with me.Parkinsons has brought into stark reality the extent of my emptiness.I often wish the end.The end that should have happened years ago.I should have expired back then.When people I have blemished,could have found contentment and happiness elsewhere.Their pain,their sorrow,weighs heavy on my shoulders.I could end it now,but realise I should of done it years ago.I was meant to die years ago.Now it would be an empty gesture.So I endure the pain,a deserved pain.Punishment for being the me I never should have been.If I had realised the extra suffering this condition has added to the burden,I may have bowed out then.My Wife could have,should have,met someone who could support her physically and emotionally in these Three years since diagnosis.Or should I say,in all the years we have been together.That may have at least brought her some happiness later in life to make up for the life I have carried her along on.A huge Tsunami of woe,turmoil and hardship.I realise now that it is all to late,life has gone,and therein lies the answer now.
Titan

#9
Dear Titan,

Goodness me what a burden you carry, I don't know you but I look back on life and realise how much my husband son and myself have missed due to parky even though we have tried to make the best of life. I am sure many people do likewise even without any illness.
When I first got my back injury I was riddled with guilt for not being the wife and mother I should have been (I never want to feel like that again as I too wanted to opt out) I suggested to my husband that he could start a new life with someone else, he got very cross and told me not to be so silly. Who would have thought he would have been diagnosed with PD some six years later.
From your posts I can see you have had some very difficult problems but we are just human beings and when drugs cause more problems it is not something that we can help until the drug company or doctors realise that they have just added to our problems and change things.
I do hope that you can come to terms with some of the situations and move on to some form of peace within yourself, if you need to get some help because you are worthy of some peace in your life.
vivian

#10
I don't know what I know now that I wish I'd known before. Perhaps if I'd known how tired I'd become,I could have devised a plan to deal with it. Now I'm too tired to think up a plan!
Just keep going whatever your symptoms is probably best, as who knows, the worst may never happen. Fingers crossed.

#11
I wish that I had kown just exactly what "the the progession Of the disease" might mean for me.

#12
I wish that I had known just what the"progession of my PD" might mean tome , and so be able to plan accordingly. And I wish that I had been warned about possible pain.

#13
When my consultant held my hands tight and said to me "I am so sad to say but you have Parkinson's Disease" That is when I realised this is not good!!
I was given an A4 file on Parkinson's to read. Info which frightened me to death, did not expect the diagnosis of PD.
I cried for days and only wish I had been better prepared and informed instead of been ignorant to it.
Also told by the nurse that I would be of an old age before it took hold of me,that was 7 years ago, now 55 and is that classed as old, well maybe.. PD is cruel what ever age we are. HATE HOW IT MAKES ME FEEL..

pb X

#14
Have great sympathy and empathy with you P.B.
On another thread, I said how frustrated I was because of having to give up a job i liked.
Six months down the line, I can honestly say that I don't miss it as much a I thought I would.
If there's any chance of reducing your hours, could you consider it ?
It's good not to have to spend so much time and effort to get myself fit enough for work each day. And then spend the whole evening recovering.
I love the freedom I have now to be spontaneous in what i'm going to do with my day.
Of course, money comes into the equation and I am a little older than you , so do have some perks, like the Ancient Britain Bus and Rail cards.
When I feel strong, I use these a lot. Recently, my meds. were not working well at all and I hardly went anywhere. This has been tweaked just a little and has made all the difference. Maybe worth looking into for you.
I wish you all the best, and better times around the corner.

#15
I was diagnosed a year ago. I was lucky that this forum existed to find information so there is nothing I didnt know thank goodness.I am glad I soon learnt off this site and others that exercising and stretching are important. Im also glad I learnt the importance of keeping away from bad stress as this can hasten progression.

I found other websites by PD folk which I found via google very interesting and helpful.

I think the thing I have come to realise is that medication can be so variable from a lifesaver to being like poison.

#16
Hi
Not to worry because what's going to happen will and if you can do something about it do it.
Will worrying make it better no it will make it worse.
Hard I know.when it's hard o concentrate on your family when your in so much pain.
Good advice but I've yet to achieve it.
John

#17
Good Morning everyone,

I hope you don't mind me chipping in here again but when my husband was diagnosed we didn't know anything about pd and at his age it was quite a shock and you all know that feeling. I was already disabled with a chronic back problem so we had started to make changes around the house such as a shower instead of a bath, changes to furniture beds etc so that I could manage. This helped us when parky came along and then we decided to move to a bungalow as when I was really bad I spent months in bed upstairs not much fun and quite isolating and I worried about my husband falling downstairs. We tried to look a few years ahead and planned our bungalow and garden to suit us for the present and the future so that when the time came we could just enjoy it without doing it when we were perhaps unable ourselves. Planning is key
Our garden is mainly paved with some borders an apple tree which the birds love and a summer house which is great when you want some quiet place to go to. We have had many parties in the garden and it really does feel like an extension to the home.
As someone once said to us you have joined the slow lane in life time to smell the roses enjoy it, not everyone's idea but quite true really so I hope you all enjoy whatever is your wish.
best wishes
vivian

#18
What I have learnt,I may have learnt eventually without Parkinson's coming into our lives nine years ago and that is that life can tough and it. Is how one decides to face each challenge that is important. My husband (pwp) says that it is important that one concentrates on what one can do and not on what one cannot do. Live life in the here and now.
Parkinson's is a very individual condition and each person is different so do not expect to get all of the things Parkinson's can throw at you or progress at the same rate as someone else.
The importance of exercising and looking after ones general health.

#19
:cry: Well Titan , my feeings exactly until i read Vivians reply . Thanks Vivian , i don't feel so bad now , and i've stopped kicking myself .

#20
Not to expect anything,then you are not disappointed when you don't get it,