Discussion
Dad was diagnosed recently.
He's been slowing down physically for a while and has had a tremor in one arm / hand for quite a while - getting seen on the NHS was impossible and taking forever, they've eventually gone private and got a pretty much immediate diagnosis.
Prescribed Dopamine and advised he'll see an improvement in the next couple of weeks but not to expect miracles.
Understand there's no cure and it'll be a gradual decline but what are people's real world experiences?
He's been slowing down physically for a while and has had a tremor in one arm / hand for quite a while - getting seen on the NHS was impossible and taking forever, they've eventually gone private and got a pretty much immediate diagnosis.
Prescribed Dopamine and advised he'll see an improvement in the next couple of weeks but not to expect miracles.
Understand there's no cure and it'll be a gradual decline but what are people's real world experiences?
Sorry to hear that OP.
My father had Parkinsons, post death I've been questioning if it was undiagnosed Parkinsons Plus. Indeed his Parkinsons meant cancer was missed, which unfortunately he died from and very rapidly too.
Knowing what I do now my number one piece of advice is to keep tabs on behaviour, better still keep a diary and even better ask him to. Keeping a record of week by week helps track the illness, and an intraday diary can help follow response to medication (e.g. 09:00 took 1 Xmg tablet, 10:00 increased mobility, 14:00 hugely decreased mobility and felt very low, 17;00 took Xmg etc.)
Do be prepared for mood swings and big highs/lows off the drugs, the lows seemed lower than baseline looking back, and watching someone sitting slumped barely moving for an hour on the biggest lows was crushing.
Encourage exercise, as much as he can take without ramping up too hard. Something with co-ordination like cycling (even static bike) is really good. Anything like that massively boosts moods both short and long term.
Stop drink, stop anything that gives a false buzz and focus on anything natural.
My father had Parkinsons, post death I've been questioning if it was undiagnosed Parkinsons Plus. Indeed his Parkinsons meant cancer was missed, which unfortunately he died from and very rapidly too.
Knowing what I do now my number one piece of advice is to keep tabs on behaviour, better still keep a diary and even better ask him to. Keeping a record of week by week helps track the illness, and an intraday diary can help follow response to medication (e.g. 09:00 took 1 Xmg tablet, 10:00 increased mobility, 14:00 hugely decreased mobility and felt very low, 17;00 took Xmg etc.)
Do be prepared for mood swings and big highs/lows off the drugs, the lows seemed lower than baseline looking back, and watching someone sitting slumped barely moving for an hour on the biggest lows was crushing.
Encourage exercise, as much as he can take without ramping up too hard. Something with co-ordination like cycling (even static bike) is really good. Anything like that massively boosts moods both short and long term.
Stop drink, stop anything that gives a false buzz and focus on anything natural.
Have a good friend who was diagnosed about 12yrs ago, he's now 65, 6yrs ago we cycled across the Pyrenees from Atlantic coast to Med coast, he still bikes around 500km a week despite a very bad tremor, his speech has got progressively worse too, one thing he has got apart from huge physical strength is the most unbending mindset I have ever seen from anyone, his doctors are astonished at how he has kept the Parkinsons at bay.
Three years in and Dad has shown a fiar level of decline - particularly in the last 6 months & showing symptoms of dementia also.
He seems to keep getting UTI's - when this happens it seems to increase the symptoms of the parkinsons.
He's been particularly bad this last couple of weeks, nos ign of a UTI in local testing, only when the bloods / urine samples are sent off for lab testing.
Anti biotics don't seem to be working this time round.
Getting support from the GP is proving tricky at the moment, with very little action being taken.
He's in the last week started getting up in the middle of the night, getting dressed. He made a cup of coffee with a tea bag in the kettle. Mum found him sat outside one night at 2am in the pouring rain.
He's very confused, yesterday grabbed a note pad and started writing engineering specs for a supplier to provide work and then wanted an envelope to post it (he was an engineer when working)
The last couple of weeks has seen such a sharp change I suspect it's more related to an infection rather than a sudden decline in his core illness.
Any advice or tips or where to look for help?
He had his annual consultant appointment for parkinsons the other day, they just advised he should attend the memory clinic.
Parkinsons nurse support is limited also.
He seems to keep getting UTI's - when this happens it seems to increase the symptoms of the parkinsons.
He's been particularly bad this last couple of weeks, nos ign of a UTI in local testing, only when the bloods / urine samples are sent off for lab testing.
Anti biotics don't seem to be working this time round.
Getting support from the GP is proving tricky at the moment, with very little action being taken.
He's in the last week started getting up in the middle of the night, getting dressed. He made a cup of coffee with a tea bag in the kettle. Mum found him sat outside one night at 2am in the pouring rain.
He's very confused, yesterday grabbed a note pad and started writing engineering specs for a supplier to provide work and then wanted an envelope to post it (he was an engineer when working)
The last couple of weeks has seen such a sharp change I suspect it's more related to an infection rather than a sudden decline in his core illness.
Any advice or tips or where to look for help?
He had his annual consultant appointment for parkinsons the other day, they just advised he should attend the memory clinic.
Parkinsons nurse support is limited also.
Feel for you on this.
We've got both in our family, but luckily on opposite sides, and with very different levels of support.
My mum was diagnosed with Parkinson's 3 years ago. She took around 4months for the medication to be titrated, but is now doing really well. Hardly a tremor.
Her GP has been amazing, loads of support.
Meanwhile, my MiL has vascular dementia and Alzheimer's. She's f*cked. Declining badly, living in denial, getting quite angry, doesn't want to do anything.
Her GP is useless. My wife must spend upwards of 10 hours per week ringing, chasing, bullying, chasing, pleading, chasing, etc the GP, social services, Memory clinics...etc. They are all totally uninterested in her (but very interested in her levels of savings and if she owns her own house....!)
On the Parkinson's. A friend of mine has it. He is early 70s. Wakes with a fair tremor, but then gets into the gym and does a resistance set and it stops. It takes 4-5 hours for the tremor to return afterwards, but it never gets as bad as before his gym session.
Couple that with the increasing evidence on the benefit of strength training to prevent broad spectrum cognitive decline, we all need to lift more in our active lives!
We've got both in our family, but luckily on opposite sides, and with very different levels of support.
My mum was diagnosed with Parkinson's 3 years ago. She took around 4months for the medication to be titrated, but is now doing really well. Hardly a tremor.
Her GP has been amazing, loads of support.
Meanwhile, my MiL has vascular dementia and Alzheimer's. She's f*cked. Declining badly, living in denial, getting quite angry, doesn't want to do anything.
Her GP is useless. My wife must spend upwards of 10 hours per week ringing, chasing, bullying, chasing, pleading, chasing, etc the GP, social services, Memory clinics...etc. They are all totally uninterested in her (but very interested in her levels of savings and if she owns her own house....!)
On the Parkinson's. A friend of mine has it. He is early 70s. Wakes with a fair tremor, but then gets into the gym and does a resistance set and it stops. It takes 4-5 hours for the tremor to return afterwards, but it never gets as bad as before his gym session.
Couple that with the increasing evidence on the benefit of strength training to prevent broad spectrum cognitive decline, we all need to lift more in our active lives!
I think my mum was diagnosed around 2016-ish. It gradually got worse, but was largely well controlled by the drugs. Lots of issues with sleeping - took a lot of fiddling with timing of doses and type of tablets to improve that so that she wasn't waking up with tremor so much. Her steadiness on her feet declined, and her gait became more shuffling - she was always at risk of tripping over door thresholds and did have a few falls. She had some mild Parkinsons related dementia - not loss of cognitive function, she was still sharp, but she was becoming more forgetful and would sometimes repeat herself. Was given Memantine, not sure how much that helped.
She had other conditions - a really bad hiatus hernia could cause her real problems. She was hospitalised more than once vomiting blood, ended up on a feeding tube for a couple of weeks with that. Those times were difficult because she couldn't keep her Parkinsons meds down, so her symptoms would get much worse. They tried a transdermal patch, which caused her to suffer confusion and hallucinations. Not great.
Towards the end of her life, she was in a lot of pain from a kidney stone. The pain was causing her to be sick, which set the hiatus hernia off. She'd been in hospital for a week, was discharged - they didn't want to do anything about the kidney stone, just monitor in outpatients. She was readmitted a week later, still vomiting all the time, still in a lot of pain. They discharged her with oxycodone, for the pain, which she had not been given in a clinical setting. She continued to be sick, constantly. A couple of days later she died at home, aged 77. Coroner's verdict was aspiration pneumonia. This is always a risk with Parkinsons if someone is vomiting a lot, and the risk is increased with opioid painkillers which suppress the cough reflex and reduce awareness.
She had other conditions - a really bad hiatus hernia could cause her real problems. She was hospitalised more than once vomiting blood, ended up on a feeding tube for a couple of weeks with that. Those times were difficult because she couldn't keep her Parkinsons meds down, so her symptoms would get much worse. They tried a transdermal patch, which caused her to suffer confusion and hallucinations. Not great.
Towards the end of her life, she was in a lot of pain from a kidney stone. The pain was causing her to be sick, which set the hiatus hernia off. She'd been in hospital for a week, was discharged - they didn't want to do anything about the kidney stone, just monitor in outpatients. She was readmitted a week later, still vomiting all the time, still in a lot of pain. They discharged her with oxycodone, for the pain, which she had not been given in a clinical setting. She continued to be sick, constantly. A couple of days later she died at home, aged 77. Coroner's verdict was aspiration pneumonia. This is always a risk with Parkinsons if someone is vomiting a lot, and the risk is increased with opioid painkillers which suppress the cough reflex and reduce awareness.
otolith said:
I think my mum was diagnosed around 2016-ish. It gradually got worse, but was largely well controlled by the drugs. Lots of issues with sleeping - took a lot of fiddling with timing of doses and type of tablets to improve that so that she wasn't waking up with tremor so much. Her steadiness on her feet declined, and her gait became more shuffling - she was always at risk of tripping over door thresholds and did have a few falls. She had some mild Parkinsons related dementia - not loss of cognitive function, she was still sharp, but she was becoming more forgetful and would sometimes repeat herself. Was given Memantine, not sure how much that helped.
She had other conditions - a really bad hiatus hernia could cause her real problems. She was hospitalised more than once vomiting blood, ended up on a feeding tube for a couple of weeks with that. Those times were difficult because she couldn't keep her Parkinsons meds down, so her symptoms would get much worse. They tried a transdermal patch, which caused her to suffer confusion and hallucinations. Not great.
Towards the end of her life, she was in a lot of pain from a kidney stone. The pain was causing her to be sick, which set the hiatus hernia off. She'd been in hospital for a week, was discharged - they didn't want to do anything about the kidney stone, just monitor in outpatients. She was readmitted a week later, still vomiting all the time, still in a lot of pain. They discharged her with oxycodone, for the pain, which she had not been given in a clinical setting. She continued to be sick, constantly. A couple of days later she died at home, aged 77. Coroner's verdict was aspiration pneumonia. This is always a risk with Parkinsons if someone is vomiting a lot, and the risk is increased with opioid painkillers which suppress the cough reflex and reduce awareness.
Sorry to hear all of that.She had other conditions - a really bad hiatus hernia could cause her real problems. She was hospitalised more than once vomiting blood, ended up on a feeding tube for a couple of weeks with that. Those times were difficult because she couldn't keep her Parkinsons meds down, so her symptoms would get much worse. They tried a transdermal patch, which caused her to suffer confusion and hallucinations. Not great.
Towards the end of her life, she was in a lot of pain from a kidney stone. The pain was causing her to be sick, which set the hiatus hernia off. She'd been in hospital for a week, was discharged - they didn't want to do anything about the kidney stone, just monitor in outpatients. She was readmitted a week later, still vomiting all the time, still in a lot of pain. They discharged her with oxycodone, for the pain, which she had not been given in a clinical setting. She continued to be sick, constantly. A couple of days later she died at home, aged 77. Coroner's verdict was aspiration pneumonia. This is always a risk with Parkinsons if someone is vomiting a lot, and the risk is increased with opioid painkillers which suppress the cough reflex and reduce awareness.
The decline in older age, and especially in that last decade of life is a horrible thing, one condition compounding another, then causing some kind of physical trauma, which in turn accelerates everything. It's led me to look so much at longevity and "healthspan" (rather than lifespan) research and opinion. Almost to obsessive levels.
Of our 4 parents, we have two at 88, one at 83 and my Mum (mentioned above) who is 4 months away from 80. The younger two (my folks) are still doing really well, but they are active. Physically, mentally, socially and emotionally. My in-laws have never been socially active, not mentally active since retiring in their late 50s. They regressed further and have all but given up on any life stimulation, and it shows. Frailty set in at least 10 years, maybe longer.
I two friends with Parkinson’s both showed signs about 3 years ago.
A Dutch friend was playing tennis at a good level 3 times per week at 74. He started to see problems, but 3 years ago was still playing tennis badly. 2 years ago he had deteriorated and was shuffling and advised to play table tennis. Last year he looked frightful and was having TIAs frequently. In September he had a massive stroke in his brain that killed him.
My mate from schooldays was shuffling 3 years at 71. He seemed to ignore the obvious and so was only formally diagnosed 18-months ago. The medication seems to be working and he is attending a couple of therapy classic each week as well as exercising in his gym each day. He has no shakes, just limited movements.
He seems to be fighting really well and remains strong mentally now 73.
I suppose that, in the end, we all die of something.
A Dutch friend was playing tennis at a good level 3 times per week at 74. He started to see problems, but 3 years ago was still playing tennis badly. 2 years ago he had deteriorated and was shuffling and advised to play table tennis. Last year he looked frightful and was having TIAs frequently. In September he had a massive stroke in his brain that killed him.
My mate from schooldays was shuffling 3 years at 71. He seemed to ignore the obvious and so was only formally diagnosed 18-months ago. The medication seems to be working and he is attending a couple of therapy classic each week as well as exercising in his gym each day. He has no shakes, just limited movements.
He seems to be fighting really well and remains strong mentally now 73.
I suppose that, in the end, we all die of something.
I can't help with who to contact, but one tip is get help early. My mother cared for my dad at home for as long as she could, then had a live in carer for a while, until the carer convinced her they couldn't care for him properly at home any more. He'd do daft things or be obstructive when she was trying to help him, and she'd get annoyed with him, and then angry at herself for being annoying with him when she knew it wasn't his fault.
When he went in to a home the difference in her was huge. My sister and I hadn't realised how much of a toll it had take on her. She was then able to spend some good times with him while the home took care of the bad times.
When he went in to a home the difference in her was huge. My sister and I hadn't realised how much of a toll it had take on her. She was then able to spend some good times with him while the home took care of the bad times.
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