MIL has Parkinson's

[JungleJimbo]

My lovely MIL has just been diagnosed with Parkinsons. She's 69 and very active, always at the gym, and only retired last week.

I'm in the medical field so have a good understanding of symptoms, but I was wondering if anyone could share any experiences with Parkinsons/ eg. how quickly things may progress. At the moment she's quite shuffly and slow when walking, struggling a lot with writing sometimes, and very slow when cutting food and eating, but otherwise seems much her usual chatty and humorous self.

Luckily we live only 15 mins from PIL, so can be there when support may be required in the future.

Any advice on things we can do to support them or experiences with the progression of the disease would be much appreciated

My advice would be for her to try her best to keep active/moving and regular physio which you may need to go private for if you can afford it. Also the medication has to be the right balance, too much and it can play havoc with their mental state, too little and physical symptoms can be troublesome. Good luck with it all.

It's an absolute bugger of a disease, sorry for you mils diagnosis. I suppose the good sign is that you aren't describing any cognitive or psychological changes (non motor symptoms), only physical ones( motor symptoms). The evidence suggest that physical activity is best for slowing progression on the motor symptoms. The charity PD Care UK runs courses on line.
Some medication can have hefty behavioual side effects, so keep an eye open for them.
How quickly the disease progresses is very individual, and related to how the brain is effected. Check in with fil, he may well already be doing caring it being obvious, help with mobility or continence needs for example.

It's really important to keep the digestive tract moving in people with pd, it's one if the autonomic functions that often goes relatively soon and constipation can be really problematic.

A lovely neighbour of ours moved here over seven years ago and had Parkinson’s then. His wife was adamant that he was to keep moving. They had a dog they took out daily to the range of green space round here. She used to send him to the shop for the newspaper every day.

I think he’d probably had it for a few years before they came here, but he was getting about quite well and doing things like tai chi, until the pandemic. Now he’s housebound, but he is also in his mid 80s and managed very well for quite a time.

V sorry to hear of your MIL’s diagnosis, she sounds a very positive person and it’s lovely you are being so supportive. I don’t have a lot of knowledge but a dear friend has been involved in Dance for Parkinson’s with the English National Ballet, there are in-person classes if you are near one of their hubs but also online classes available. I know the participants find it useful and rewarding. Link is here. Best of luck.
www.ballet.org.uk/project/dance-for-parkinsons/

Thank you all

She is very very keen to keep as active as possible, so will definitely keep moving as much as she can!

Will have a look at the ballet classes and see if it's something she might be interested in

Not too sure if there are any plans for meds at the moment, she'll be seeing a specialist soon. I think it's probably a bit early to start medication, as she's doing fairly well at the moment so qpuld be worried about getting the dose too high and side effects

My father had mild symptoms for about 5 yrs, but then progressed quite quickly and developed Lewy bodies dementia and was in a care home/passed away within 2 years. It’s a horrible disease and I’m sorry your mil has been diagnosed.

Sorry to hear about your MIL.

My Mum was diagnosed in 2018 in her late 70s but had had a tremor for about 18mths prior to that. Hers is controlled by medication (since 2019) and she has been doing well but because of Covid hasn't actually been seen in person by a clinician since 2019.

Unfortunately she wouldn't move much and as a result her mobility is much reduced. She needs help getting in and out of bed and dressing, etc. Can't cut up her food.
From being very smart & young at heart, she is now a little old lady. 😟

Currently she is not very well and is spending a lot of time sleeping but is on painkillers for groin pain, so that's possibly the painkillers making her drowsy/vacant.

Hard to say how quickly it will progress; Mum was told by her consultant that he has patients diagnosed 20yrs ago who have not deteriorated.

I would say keep your MIL moving! Keep going to the gym.

My Mum was diagnosed 12 years ago. In her late seventies now, she is still sharp as a tack and does light housework, although gets very tired at times.
We panicked a lot when she was first diagnosed, but she has had an ok quality of life for the past decade. Best wishes.