Parkinson disease
Discussion
Hello PHers !
I tried the search, but found nothing on the parkinson disease.
My mother has been diagnosed with it last week, she is 74.
Over the last years she had some problems with her shoulder and arm,
but it took lots of tests and three different docs to find out what it really is.
I have read a bit about it now, and it seems not nice.
The computer inside the head is still working fine,
but it seems that the cable connectors have corroded,
and the signals to the servo motors (muscles) are delayed and distorted.
(just to keep it somehow motoring connected, this is PH after all)
I think I will have to convince her to go to a support group/self-help group,
so she realizes that she is not alone with this new situation in life,
and to get her started in some gymnastics (which will be sometimes not pleasant).
My mum, as our whole family, has been notoriuosly healthy,
never missed a day at work (pensioner now), and is quite depressed now,
which is also somehow related to Parkinson (as I have read).
So, over to the PH massive now :
Do you have someone with Parkinson in your family, or as a friend,
and how have they -and you- coped with the disease?
Regards,
Benni
I tried the search, but found nothing on the parkinson disease.
My mother has been diagnosed with it last week, she is 74.
Over the last years she had some problems with her shoulder and arm,
but it took lots of tests and three different docs to find out what it really is.
I have read a bit about it now, and it seems not nice.
The computer inside the head is still working fine,
but it seems that the cable connectors have corroded,
and the signals to the servo motors (muscles) are delayed and distorted.
(just to keep it somehow motoring connected, this is PH after all)
I think I will have to convince her to go to a support group/self-help group,
so she realizes that she is not alone with this new situation in life,
and to get her started in some gymnastics (which will be sometimes not pleasant).
My mum, as our whole family, has been notoriuosly healthy,
never missed a day at work (pensioner now), and is quite depressed now,
which is also somehow related to Parkinson (as I have read).
So, over to the PH massive now :
Do you have someone with Parkinson in your family, or as a friend,
and how have they -and you- coped with the disease?
Regards,
Benni
Benni said:
Hello PHers !
I tried the search, but found nothing on the parkinson disease.
My mother has been diagnosed with it last week, she is 74.
There are actually loads of treatments for Parkinsons disease, depending on the type, which can enable people to retain a pretty normal level of functioning, depending on the level of disability she has now. I tried the search, but found nothing on the parkinson disease.
My mother has been diagnosed with it last week, she is 74.
http://www.parkinsons.org.uk/
http://www.patient.co.uk/showdoc/26738865/
Edited by 968 on Thursday 4th December 23:54
Thank you so far.
I searched in PH for an existing thread (there is none?),
and already did my pc homework in google, wiki etc.
As I am german, there is a parkinson association here, too,
and I will try and get my mother to go to their meetings / gymnastics etc.
They also offer help for relatives,
as this is a new, unknown situation also for me.
My mum was always taking care of her own life,
worked self-employed (tourist business), travelled a lot,
and as a pensioner was guiding "senior tourist groups" until 2 years ago,
when the first symptoms showed (but she did not realize or tell).
So now I have to get used to her not being as mobile as before,
not so self-concious, not so strong in body and mind.
There is also the fear -both hers and mine- that the disease
will also affect her mental health ("Alzheimer" lurks in my mind),
although I have read that this must not be the case...hoping.
With many PHers in the 40s/50s (47 myself), and their parents around/over 70,
maybe there are more around to share their experiences in the next days.
Regards,
Benni
I searched in PH for an existing thread (there is none?),
and already did my pc homework in google, wiki etc.
As I am german, there is a parkinson association here, too,
and I will try and get my mother to go to their meetings / gymnastics etc.
They also offer help for relatives,
as this is a new, unknown situation also for me.
My mum was always taking care of her own life,
worked self-employed (tourist business), travelled a lot,
and as a pensioner was guiding "senior tourist groups" until 2 years ago,
when the first symptoms showed (but she did not realize or tell).
So now I have to get used to her not being as mobile as before,
not so self-concious, not so strong in body and mind.
There is also the fear -both hers and mine- that the disease
will also affect her mental health ("Alzheimer" lurks in my mind),
although I have read that this must not be the case...hoping.
With many PHers in the 40s/50s (47 myself), and their parents around/over 70,
maybe there are more around to share their experiences in the next days.
Regards,
Benni
Benni,
Sorry to hear that. I too have been touched by this disease of late with a fmaily member being diagnosed. To be as succinct as I can, from what I have leanrt so far, this is a life sentence, not a death sentence.
It is something that you have to be aware of and you can medicate for, but will never cure. It is something that affect different people in different ways.
I am still on the very steep learning curve with PD (the lingo for Parkinsons Disease) and will learn as much as I can to helpy the PWP (person with Parkinsons) in my life.
Read all you can, but try to make sure it is from a relaible source, not from a source trying to sell you the dream!
Good luck
Pork
Sorry to hear that. I too have been touched by this disease of late with a fmaily member being diagnosed. To be as succinct as I can, from what I have leanrt so far, this is a life sentence, not a death sentence.
It is something that you have to be aware of and you can medicate for, but will never cure. It is something that affect different people in different ways.
I am still on the very steep learning curve with PD (the lingo for Parkinsons Disease) and will learn as much as I can to helpy the PWP (person with Parkinsons) in my life.
Read all you can, but try to make sure it is from a relaible source, not from a source trying to sell you the dream!
Good luck
Pork
I sympathise, Benni. I'm in a similar kind of situation - my Dad was diagnosed as being in the early stages of it a few months ago. This followed over a year of problems with his wrist and motor control in his fingers, and several consultant appointments before anyone twigged.
He's on Roniparol and it does seem to help - his gait has improved and he's generally better in himself than before he started taking it. Some days are still better than others though, and the drug has plenty of side effects of its own - dizziness and nausea have been a problem for Dad.
I do worry about what the next few years hold, especially having seen a family friend with Parkinson's degenerate over the years. To be honest though, I worry more for Mum than for Dad and how she will cope.
Best wishes to you and your mum.
He's on Roniparol and it does seem to help - his gait has improved and he's generally better in himself than before he started taking it. Some days are still better than others though, and the drug has plenty of side effects of its own - dizziness and nausea have been a problem for Dad.
I do worry about what the next few years hold, especially having seen a family friend with Parkinson's degenerate over the years. To be honest though, I worry more for Mum than for Dad and how she will cope.
Best wishes to you and your mum.
No one had Parkinsons but my Grandad died from MND which is a bit similar in that the brain stops working so the muscles get messed up (with MND I think something stops the electric signals getting through, or the neurones in the brain stop sending them properly).
Changes are social services will get involved. They refused to help my Grandparents with costs due to them having savings, but then tried to persuade my Nan to put my Grandad in a care home (something that would have killed him a lot quicker in my opinion). When my Nan really couldn't cope they finally stepped in and offered a carer to help my Grandad in the mornings and evenings and the MND Association offered a carer to come in for 2 afternoons a week so my Nan could do the shopping and continue her volunteering at the local school, and my Nan had a weeks holiday in Italy while my aunt and Dad looked after my Grandad.
Charities will be invaluable to you and her, they can put her in touch with community centres, carers, the right hospital departments to contact etc etc. If she worked in the past then there may be some charities that will help her depending on what type of work she did (my Grandad was in the army for a few years and some army charities were fantastic with helping them out with costs for things like a stairlift and getting the bathroom refitted with hand rails, etc etc).
If she isn't living in a bungalow then she will probably need a stairlift eventually so start investigating companies now, and contact the main charity for Parkinsons to see what support they will offer as things progress.
Changes are social services will get involved. They refused to help my Grandparents with costs due to them having savings, but then tried to persuade my Nan to put my Grandad in a care home (something that would have killed him a lot quicker in my opinion). When my Nan really couldn't cope they finally stepped in and offered a carer to help my Grandad in the mornings and evenings and the MND Association offered a carer to come in for 2 afternoons a week so my Nan could do the shopping and continue her volunteering at the local school, and my Nan had a weeks holiday in Italy while my aunt and Dad looked after my Grandad.
Charities will be invaluable to you and her, they can put her in touch with community centres, carers, the right hospital departments to contact etc etc. If she worked in the past then there may be some charities that will help her depending on what type of work she did (my Grandad was in the army for a few years and some army charities were fantastic with helping them out with costs for things like a stairlift and getting the bathroom refitted with hand rails, etc etc).
If she isn't living in a bungalow then she will probably need a stairlift eventually so start investigating companies now, and contact the main charity for Parkinsons to see what support they will offer as things progress.
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