Hi all,
I’m worried sick about my dad and have just come across this forum, so thought it worth asking if anyone knows of further help options for him.
Long story short, after ongoing balance issues and some other symptoms, my dad had various tests, and was diagnosed with Parkinson’s in March this year. At that point, it was so early that the MRI came back negative for Parkinson’s, it was only at a follow up consultant appointment that they noticed something very minor about how he held one arm, that led them to send him for a DaTSCAN which then confirmed the diagnosis.
Dad was never directly told his diagnosis. All he got was a copy of the letter that was sent to his GP, which said he’d been diagnosed with Parkinson’s and asking the GP to prescribe levodopa.
At the time I tried to encourage dad to seek a follow up appointment but he didn’t see the point. So he took the levodopa and that was that.
Mum and dad are old school, they innately trust the system and don’t like to cause a fuss. After a few months of no improvement, I had been trying hard to say he should seek a follow up to ask about options, but they refused. I found out about Parkinson’s nurses and eventually they agreed to go. First appointment was beginning of September, and my parents came out saying how wonderful the nurse was and were glad they went. Nurse didn’t want to try multiple changes at once as then we wouldn’t know which one helped, which makes sense. So she said to increase the levodopa, and come back in 3 months.
If that hadn’t helped, she said she would refer him to some sort of class (don’t know the details) that teaches you movements of some sort to help. It’s not available on NHS or even in all parts of the country, but the Parkinson’s nurse had access to it. It apparently has a 100% success rate at improvements, so sounds fantastic.
The problem is, from being so mild that the MRI came negative for Parkinson’s in March, my dad has gone very very rapidly downhill so quickly. His walking slowed more and more, his balance issues got worse and worse. He now cannot walk more than a few yards, and that is at a painfully slow shuffle, with lots of wobbling and struggling.
Mum and dad have a caravan in Wales, in a very quiet out of the way place. Dad lost his balance and fell over, and could not get himself up. My mum is in a wheelchair (dad is her carer) so she couldn’t help. He was there for ages, and eventually someone came along who helped him up.
Last week mum has told me of other issues that are starting. Firstly lots of toilet problems which she didn’t go into detail of, but results in her doing lots of difficult washing and cleaning up - which she can barely manage with her own disability.
More worryingly dad’s now started memory issues. Couple of examples - mum found him sat in silence and asked what he was doing, he couldn’t remember how to turn the TV on - as in just turn the power button on, not even fiddling with the TV guide or anything. Another is that mum had a conversation with him about having to take his pills late as they had eaten slightly late. 2 minutes later she found he’d gone ahead and taken the pills, and couldn’t remember the conversation.
So all in all, I’m extremely worried about them both. Dad is mum’s carer as she’s in a wheelchair - she can get around the house with a crutch, but can’t do much of the house chores etc, dad does those. But due to the memory issues mum is now having to hover around him and check on him constantly, as he keeps doing silly things and she doesn’t dare leave him unattended for long. She’s now not sleeping as a result, as every time he gets up in the night (frequent now due to Parkinson’s) she is dead alert, listening, to make sure he doesn’t fall over.
After much pestering from me, mum finally rang up to chase up the promised follow up with the Parkinson’s nurse. She was told it wouldn’t be until January which is clearly far too late. After ‘begging’ as she put it, she was given an appointment 6 weeks from now. But honestly, if dad goes down as much in the next 6 weeks, as he has in the last 6, I don’t know what is going to become of them.
I’m sorry for the long post, but I am hoping someone out there with Parkinson’s experience may know, if there are any other avenues for help that I could try for them? The nurse seems a great contact, but beyond that is there anything else? I know there is nothing else via the NHS, as the nurse has said there is next to no funding for Parkinsons.
Thanks for anyone who has read all of that.
. The DATscan I understand to be the only diagnostic tool for deciphering the presence of Parkinsons.