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Dad with Parkinsonism

(8 Posts)
goodenoughal Tue 29-Dec-15 13:02:47

Hello. My dad, who is 71, was diagnosed with Parkinsonsism a couple of years ago. We don't have a great relationship and I see him quite rarely (long story) but I saw him yesterday and it's clear he's significantly deteriorated.

His walking is really slow and laboured, he struggles to talk, has quite bad tremors and has just had to give up driving. He's been on dopamine (I think) a while and is just about to up his dose.

I'm just trying to get my head round how he is and how I can deal with it.

He was basically absent from my life (his choice) for years and came back into my life about 7 years ago (I'm 43) after a bit of a crisis (his not mine) so I'm very wary of getting too involved in his life and care but I'm very sad about how he is.

Can anybody recommend any books/websites etc which give a good insight into Parkinsonsism (and how it's different to actual Parkinson's)? Or any other ideas that might help me get my head round all this?

Thank you.

RockinHippy Tue 29-Dec-15 14:03:30

I'm sorry, I can't help you with the bigger problem, other than to say that I feel for you as I have a similar sounding relationship with my own elderly DF, currently NC, but your post caught my attention & I just wanted to suggest something as I'm reading a lot about it at the moment & it's turned out to be relevant to family members with Parkinson's, plus a friends DM

Has his B12 levels been checked & do you know his blood serum result??

deficiency is common in the elderly & can masquerade as a host of medical conditions, Parkinson's included - this will come under neurological symptoms, which NICE guidelines say he should receive B12 loading & then maintenance injections for regardless of his blood results - this could improve his health a lot I'm adding a book cover, which will help understand it all.

goodenoughal Tue 29-Dec-15 15:21:41

Thanks Rockin, I'll follow that up.

Anyone else?

RockinHippy Sun 03-Jan-16 20:44:16

Bumping it up for you

BikeRunSki Sun 03-Jan-16 20:58:43

My dad had Parkinson's Disease; Parkinsonism is another name for the same disease.

Parkinson's UK have lots of support and information.

Your dad's symptoms sound very similar to my dad's. The different symptoms manifest to different extents in different people. Dad had the tremor and huge difficulty in moving, walking etc and the "death mask" expression. He became resistant to his drugs (L-dopa) over time, and degenerated quickly. He needed full time nursing in the end. Ultimately he died of pneumonia because he was so weak.

I know that treatments have changed a lot in the last couple of decades since dad died though, so the outlook may not be so bleak for your dad.

Does your dad live alone? Or with someone? Are his symptoms under control? I know that Parkinson's made my dad utterly miserable, and nursing home was physically exhausting for my mum (she is small and also had 4 teen/twenties DC to worry about though). Perhaps he would appreciate some emotional support.

whataboutbob Sun 03-Jan-16 21:08:32

I wanted to say the same as bikerunski, my DGP had parkinson's which deteriorated steeply after my DGM died. His symptoms were as BRS describes. It is a truly nasty illness. In the end he could not stay at home after he got cancer, had an operation and was very much weakened, I had to arrange for him to go into a care home.
Also, I do not want to discourage you but I am a state registered dietitian and in my experience B12 deficiencies are very rare, even in vegans.
Parkinson's UK sounds like a good place to start.
Does you r Dad have any other sources of support?

RockinHippy Thu 07-Jan-16 04:27:36

Also, I do not want to discourage you but I am a state registered dietitian and in my experience B12 deficiencies are very rare, even in vegans

sorry What but I have to disagree with that - sadly not so much rare, as rarely adequately diagnosed & treat. In Japan anything under 500 is a deficiency & is quickly treat,met hat is a much higher level than here in the UK. No surprise that Japan suffers far less with the conditions B12 deficiency causes/mimics. Even the BSH & NICE recognise that the NHS tests are flawed & recommend treating on symptoms where neurological symptoms exist

whataboutbob Fri 08-Jan-16 20:28:24

Thanks Hippy I will look into this, I take your point there is more than one way of looking at this and interpreting blood results.

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