Unexpected advice about PD

[WinnieThePoo]

Exercise, intermittent fasting, tai chi, and use your "bad"side as much as possible. Says a top UK neurologist.

I was back in the UK last week because my Dad's condition in hospital had deteriorated badly. When I got there he couldn't speak,stay awake for more than half an hour, and I had to try to feed him with a teaspoon. The hospital had used codeine to try to stabilise his stoma and he was on the point of respiratory collapse when we noticed his drug chart , had the codeine stopped, and launched a formal complaint.

As part of their response to that complaint the hospital sent their senior PD specialist to clinically review Dad. She is perhaps the foremost UK PD specialist and before bowel cancer become his number one concern it was his ambition to be seen by Dr khan. He lit up like a Christmas tree when she came to see him and snapped out of his delusions and was fairly lucid. After the exam of Dad I told her I had PD too and she gave me some advice.

Try to keep meds to a minimum. Absolute best thing is regular exercise. Intermittent fasting also good. Tai chi much better than weights for exercise. Use your bad side as much as possible since using that side stimulates some recovery in the brain. She thanked me for participating in research but said not to rely on a pharmaceutical solution. Not what I was expecting from someone in the mainstream.

[reedboat2]

Poo I’m sorry to hear about your dad. I hope his condition improves.

I had a 2 hour Tai Chi class this morning. Good workout. I train 3x /week. Added a sword form about a year ago for extra challenge. Great for balance, building core strength, and flexibility. And definitely challenging my right side. Dr Mischley says to work outside of one’s comfort zone. I feel like a klutz every time I pickup the sword. Teachers and other students are all very encouraging. Good stuff, I highly recommend it.

[WinnieThePoo in reply to reedboat2]

Thanks. I'll try to find a local Tai chi, and some time...

For the minute mountain dog walking, tennis and gym sessions take up my available time for exercise. The dogs would never forgive me if I cut out the mountain walks. And I play guitar and piano, and am touch typing now, to make me use my left side (and lock the door, pour drinks, anything I can with my left hand)

Dad is MUCH better 7 days after stopping codeine. Walking to the loo, showering himself, eating dinner himself, and (mostly) reasonably coherent, although he still has his moments. Apparently there's a conker tree I still need to cut down...

[Seamus6 in reply to WinnieThePoo]

Excellent advice 👍

[Fed1000]

Hi Winnie, I am happy that your father is improving. What do the specialist PD want to say with "dont't rely on a pharmaceutical solution"?

[WinnieThePoo in reply to Fed1000]

I think she meant that there are a lot of trials but most fail to add anything useful to PD care. Better to rely on "here and now" therapy like exercise

[Hil101]

Interesting to hear about Dr Khan. Where is she based?

Best wishes to you, glad to hear things have improved.

[WinnieThePoo in reply to Hil101]

She is based in Maidstone and Tunbridge Wells and has a private clinic at the shard in London

[Pa-zzi69]

THANK YOU for what feels like great advice, motivating me toward tai-chi and intermittent fasting.

Did Dr Khan say how much fasting ?

One day a week or a month ?

Partial fasting or all 3 daily meals ?

Did she justify the [generally well-accepted] principle of operation of fasting relative to Parkinson ?

MarcP

[WinnieThePoo in reply to Pa-zzi69]

I was mostly focused on my dad but I have an impression of twice a week. She was very keen on using your bad side. Told me about experiments with rats where they immobilised their good side with bandages to make them use their bad side and measured brain recovery

[Kevin51]

Hi WTP, curious to know what was the problem with codeine. Anything specific to PD?

[WinnieThePoo]

No , not specific to PD. Dad obviously reacts badly to opiates. He was delusional and confused, and very sleepy after morphine used in surgery. He is 85,and has severely impared renal function. The codeine was prescribed, after he had recovered from the surgical morphine, at 60mg QDS to control his stoma flow, with no risk assessment. 15mg would be the maximum normal dose for someone of his age and condition - and that wasn't safe in Dads case. The frustration was he was prescribed an unacceptably high dose, with no risk assessment and no monitoring. He progressively became more confused and hallucinatory, and drowsy, lost the ability to speak, could only eat jelly spooned into the side of his mouth, and started to show signs of respiratory depression. And after we complained and the registrar on call agreed to cease administration, some dick-head junior doctor over-ruled and continued administration. The hospital are still investigating our complaint, but they know they nearly killed him.