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.
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