Can anyone talk to me about parkinsons?

[Strawberrycornetto]

My FIL has parkinsons disease. He is early 60s and was diagnosed 4 years ago. Despite all the drugs and stuff, I am shocked by how quickly he has deteriorated. They are staying at the moment and he is almost immobile now and so bent over, it makes me really sad for him and MIL.

I just wondered if anyone has first hand experience and can tell me what to expect. I am very worried for MIL, and also think DH may need both support but also to understand how much support his parents are going to need. Their house has upstairs bedroom and for example I cannot see how he will be able to continue to manage stairs. I cannot see how they can stay there because the house cannot be modified for a downstairs bedroom. They will not even discuss this but I am so shocked by his deterioration since Christmas that I now think they may not be able to cope in the house even for another year. They do not has much money, are there grants or funding available to support modifications to their house?

This is a bit rambling, am just so shocked at what I have seen tonight.

My grandfather had it. It was diagnosed when he was 66 and he died aged 80. He was ok for quite a while, and then deteriorated in "jumps" eventually going into a home for his last year as my grandmother couldn't lift him. It was very sad to watch. This was some years ago now, and I think medication has got a lot better recently so I might be rather out of date. Wishing you and your family the best...it is a very cruel disease

I don't know much about Parkinson's, but I would suggest that your FIL gets referred to Occupational Therapy if he hasn't already been there. My daughter has a few mobility issues, and and OT came to our house and has lent us some equipment to make things safer/more comfortable for her.

If they are under 65, your FIL may be able to claim Disability Living Allowance (DLA). It isn't means tested, so whatever else they have coming in won't affect it. If he can claim that, your MIL could apply for Carer's Allowance.

I think it's usually Social Services that give grants for larger adaptations, but I'm not 100% sure about that as we haven't needed to do that yet. Have a look around at some Benefits/disability/carers websites as they might be helpful.

Thanks. Have had a long chat with my mil tonight. It is actually far worse than I had even feared. Still trying to absorb it. Saw her cry for the first time in 15 years. So sad.

Thanks for the link. I will definitely need to speak to them in the morning.

I help care for a lady with Parkinson's, and her symptoms appear similar to those of your FIL's.

The most important thing is to make sure that his meds are at the correct dosage; as the disease progresses the meds need constant adjusting. As far as my client is concerned (she's an ex-health professional)the GP does not have enough experience to do this and she always needs to see her consultant. Unfortunately this always takes time and she may have a few months when she freezes constantly, has falls etc. Once the meds are sorted she's so much better. It may well be that your FIL's meds need sorting out.

Secondly, Parkinson's sufferers have a very fast metabolism, so need to eat a high calorie diet just to maintain their weight, so it's all those yummy things that may have been avoided previously.

It's a horrible disease, and you should have a word with Social Services to see what they can offer in the way of help, as your MIL may well become exhausted and need some respite, even if only for half an hour a day.