I went to visit my good friend – a widow – in her local hospice today. Last October, she collapsed with a stroke. Shortly afterwards, she was diagnosed with an inoperable, malignant, brain tumour. A course of therapy over Christmas failed and had to be aborted.
She had always been intelligent and a brilliant communicator. Now, after only three months, she is bedridden and can’t elucidate the simplest sentence. Her elder daughter is expecting her second child in six months’ time. It is unlikely that my friend will live to see that child.
Would I, a PwP, swap places with my friend?
No, I would not.
I agree with you. There are always people worse off.
I do hope your friend is peaceful and pain free.
I do hope your friend is peaceful and pain free.
Thank you, Skye.
So do I.
So do I.
oh no, Lily, that is dreadful, poor girl. Make you feel very grateful doesn't it. Parkinson's is a horrible disease but it won't kill you. You learn to deal with the symptoms and just get on with life.
I do hope she doesn't suffer. Thinking of you.
Caroline
I do hope she doesn't suffer. Thinking of you.
Caroline
My friend died this morning.
Hi Lily
Really sorry to hear that. Our condolences.
Take care,
Luis
Really sorry to hear that. Our condolences.
Take care,
Luis
My dear Lily,
I hope that you will take this post in the spirit with which it is intended
I am so sorry to hear that you have lost a good friend, who obviously went through a dreadful time.
But another person's suffering does not diminish your own. As my consultant said ( and actually called my O/H in to hear what she had to say) - pd is a horrible condition and she felt constantly amazed at the bravery of those who suffer with it.
It is not a competition as to who has the "worst" illness.
Be kind to youself.
With my best regards
AB
I hope that you will take this post in the spirit with which it is intended
I am so sorry to hear that you have lost a good friend, who obviously went through a dreadful time.
But another person's suffering does not diminish your own. As my consultant said ( and actually called my O/H in to hear what she had to say) - pd is a horrible condition and she felt constantly amazed at the bravery of those who suffer with it.
It is not a competition as to who has the "worst" illness.
Be kind to youself.
With my best regards
AB
Lily so sorry to hear about your dear friend.
Makes you realise how precious life is.....Take care x
Makes you realise how precious life is.....Take care x
Thank you so much for your kindness Caroline, Luis and PB, although it’s thinking about her daughters that makes me so sad. It's all happened so quickly.
AB: Your words make perfect sense and mean a lot to me. Thank you for your understanding.
AB: Your words make perfect sense and mean a lot to me. Thank you for your understanding.
So sorry to hear your sad news Lily 
.
Sincere condolences, Lily.
Caroline, you say that "Parkinson's is a horrible disease but it won't kill you .......... just get on with life". If this genuinely describes your own experiences of PD to date I envy you.
PD may not kill you, but with or without medication it can grab you in its giant claws and virtually squeeze the life out of you. Certainly it leaves folk in despair, unable to perform the simplest functions needed to be able to cope, and sadly unable to retain any dignity.
This frequently results in serious depression and suicidal thoughts, as patients ponder the point of it all. On top of a wide range of awful pains of course. You've no doubt witnessed PD freezing? Many of us wake up in that condition every morning: painfully rigid, speechless and face down into the pillows. Completely unable to use a single muscle anywhere in the body.
I haven't left the house in over 2 years. The only times I now leave my room are when I need the loo/shower (I use my "pee bottle" if we're only talking "number ones"). I haven't even been downstairs since before Christmas. Everything seems so pointless. I know that AB is in a not dissimilar state to my own, so her bravery and strength never cease to amaze me.
Perhaps PD patients should be "graded", according to the pain, discomfort, disruption, immobility, financial problems and psychological downturn the condition causes them.
I'd put myself at about 8 out of 10. How would others score themselves?
.
Sincere condolences, Lily.
Caroline, you say that "Parkinson's is a horrible disease but it won't kill you .......... just get on with life". If this genuinely describes your own experiences of PD to date I envy you.
PD may not kill you, but with or without medication it can grab you in its giant claws and virtually squeeze the life out of you. Certainly it leaves folk in despair, unable to perform the simplest functions needed to be able to cope, and sadly unable to retain any dignity.
This frequently results in serious depression and suicidal thoughts, as patients ponder the point of it all. On top of a wide range of awful pains of course. You've no doubt witnessed PD freezing? Many of us wake up in that condition every morning: painfully rigid, speechless and face down into the pillows. Completely unable to use a single muscle anywhere in the body.
I haven't left the house in over 2 years. The only times I now leave my room are when I need the loo/shower (I use my "pee bottle" if we're only talking "number ones"). I haven't even been downstairs since before Christmas. Everything seems so pointless. I know that AB is in a not dissimilar state to my own, so her bravery and strength never cease to amaze me.
Perhaps PD patients should be "graded", according to the pain, discomfort, disruption, immobility, financial problems and psychological downturn the condition causes them.
I'd put myself at about 8 out of 10. How would others score themselves?
.
Thank you Ray.
I’m truly sorry you’re suffering so badly. However, I'm not sure it’s entirely fair to criticise Caroline as she is probably at a relatively early stage in her diagnosis. I suppose it all depends on that, combined with how well you are tolerating the medication. I was diagnosed nearly two years ago, but diagnosed myself three years earlier. At present, I would score myself 2-3 although I know this will rise as time goes on. I realise I am fortunate not to have any financial problems.
I think what I meant when I started this thread is that, because this condition is slow to develop, we always have the glimmer of a hope that a cure will be found, whereas someone with an aggressive tumour doesn’t. I’m sure I’m not the only person on this site who Googles ‘Parkinson’s News’ every day and gets excited at every new development.
In other words, we can only hope, but at least we can hope.
I’m truly sorry you’re suffering so badly. However, I'm not sure it’s entirely fair to criticise Caroline as she is probably at a relatively early stage in her diagnosis. I suppose it all depends on that, combined with how well you are tolerating the medication. I was diagnosed nearly two years ago, but diagnosed myself three years earlier. At present, I would score myself 2-3 although I know this will rise as time goes on. I realise I am fortunate not to have any financial problems.
I think what I meant when I started this thread is that, because this condition is slow to develop, we always have the glimmer of a hope that a cure will be found, whereas someone with an aggressive tumour doesn’t. I’m sure I’m not the only person on this site who Googles ‘Parkinson’s News’ every day and gets excited at every new development.
In other words, we can only hope, but at least we can hope.
Thank you Kyloe also.
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Thanks, Lily, you're quite right; apologies for the self-indulgence.
I was dx myself over 11 years ago, and with hindsight can now spot symptoms going back 30 years before that. My financial straits are due to the DAs I was given, and the resultant 7 years of OCDs - hardly something I can blame on you or Caroline!
Take care.
Ray.
.
Thanks, Lily, you're quite right; apologies for the self-indulgence.
I was dx myself over 11 years ago, and with hindsight can now spot symptoms going back 30 years before that. My financial straits are due to the DAs I was given, and the resultant 7 years of OCDs - hardly something I can blame on you or Caroline!
Take care.
Ray.
.
No need to apologise Ray: a little bit of self-indulgence does you good! (Well, that's what I reckon anyway.)
I have always found this "grading system" rather difficult to have any faith in. One person's 1 is anothers 10. Several years ago, I had an operation. I was in agony. Asked by a nurse to rate my pain level on a scale of 1 -10, I (not wanting to seem that I was over-reacting, replied something like 7/8. I sneeked a look at my notes which were at the bottom of the bed. She had recorded a subjective level of the pain that I felt as 4!
Every Parkinsonian is different and at different stages and ages .
I have been married to my husband for 54 years , he was diagnosed EVENTUALLY ABOUT 5 years ago .
Parkinsons was something that I knew very little of . I certainly didn't think it was something my husband has been living with at different stages for all those years . But looking back he had been living with so many of the symptons ,
I used to joke with him saying that he was mechanically dyslexic . Fortunately I have been able to do some of the manual things he found so difficult .
They do say that you do not die from Parkinsons but the stages you can go through can be very frightening especially if you happen to have other problems as well .
The stress of the other illness obviously makes it harder to cope with the Parkinsons and visa versa .
As it happens three years before my husband was diagnosed my mother was struck with a very very bad stroke .Please don't think I am comparing your friend with my mother , she was an old lady but life is sweet at any age . In some ways going through that experience has in some ways helped me to recognise and cope with some of my husband symptons .
It can be a living death for some sufferers and their families who live with it .
I think we are all very brave . we have no other choice do we
.
I have been married to my husband for 54 years , he was diagnosed EVENTUALLY ABOUT 5 years ago .
Parkinsons was something that I knew very little of . I certainly didn't think it was something my husband has been living with at different stages for all those years . But looking back he had been living with so many of the symptons ,
I used to joke with him saying that he was mechanically dyslexic . Fortunately I have been able to do some of the manual things he found so difficult .
They do say that you do not die from Parkinsons but the stages you can go through can be very frightening especially if you happen to have other problems as well .
The stress of the other illness obviously makes it harder to cope with the Parkinsons and visa versa .
As it happens three years before my husband was diagnosed my mother was struck with a very very bad stroke .Please don't think I am comparing your friend with my mother , she was an old lady but life is sweet at any age . In some ways going through that experience has in some ways helped me to recognise and cope with some of my husband symptons .
It can be a living death for some sufferers and their families who live with it .
I think we are all very brave . we have no other choice do we
.