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Advice please on Parkinsons, dh diagnosed yesterday :(

(8 Posts)
triplets Thu 20-Nov-14 00:00:42

Is anyone else looking after their dh or family member with this? On top of cancer this is so unfair. Feel so scared and sorry for him, any help very much appreciated. xx

3catsandcounting Thu 20-Nov-14 10:31:01

Hi Triplets, I posted on your previous thread. So sorry you've had the diagnosis (even though you probably knew!)
I didn't really 'look after' my Mum when she was diagnosed, (my children were very young at the time, and DH was working away.) Mum lived alone (15 mins drive away) and just carried on as normally as she could. It's a slow-progressing condition and that helps in a way, as you can make changes or adjustments along the way.

I would ask your GP where the nearest Parkinson's nurse is located; they're invaluable for advice and support. As I said on the last thread, the timing of the meds is crucial Mum, being on her own, often forgot to take them and once you've missed one lot, it's difficult to 'catch up'!
The PD Society website was a great help to me (they have a brilliant forum, with a section on 'newly diagnosed') - anyone can join in - including family, friends and carers. My mum didn't take advantage of it, she was always a little bit in denial.

I found getting used to the diagnosis was the worst part, after that you just get on with it. For me, having had a father with cancer and then a mother with PD, the cancer was the scary one, the PD was more frustrating and a bloody nuisance at times, but it's more about adjustment. In fact, many years ago, Parkinson's in the 70+ years was seen as part of 'old age' and was quite often overlooked.

• Meds on time, every time* is my mantra!!!

triplets Thu 20-Nov-14 12:55:56

Thank you 3cats he is collecting the meds today, I don`t know what they are as yet! Yes it is another period of getting used to things, next week he goes back for the result of his latest ct scan for cancer, fingers all x`d as that really would push him over the edge. Its hard isn`t it, telling the kids again was tough, they haven`t asked many questions, busy with ther own lives which is good. Thank you for taking the time to post, I`ll probably be back!! x

CarbeDiem Thu 20-Nov-14 14:00:33

My GF was diagnosed in his mid 40's. It took a good while for him to first agree to take the meds (so Nan said) and then to find the right combo that worked the best but up until his mid 60's you wouldn't have known he had PD as all he really had was an arm tremor.
Later he got a tremor in his legs too and a bit of a stooped gait but all in all he did manage quite well with it.
Really important - once on meds - not to suddenly stop them. My GF ran out once and within days he was like a different person, it had a catastrophic effect on him and he had to go into hospital until they stabilised his dopamine levels again.
His death at 80 years old had nothing to do with PD.

Good luck with everything XX

Bartlebee Thu 20-Nov-14 21:35:22

Sorry for your news.

My great aunt had it for several years, and tbh, apart from her resting tremors, it wasn't noticeable due to her meds.

She is dead now, but died from a chest infection.

triplets Thu 20-Nov-14 22:13:48

Hi and thank you, its comforting and reassuring that its not necessarily all doom and gloom. Just another thing to deal I long to be free from worry. x

trulymadlydeeply Fri 21-Nov-14 10:22:49

So sorry Triplets. You've had enough worry for a lifetime and beyond.
Thinking of you with lots of love


triplets Fri 21-Nov-14 22:34:09

Thank you TMD you are always so kind xx

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