Hi all, I wonder if anyone here can offer any advice please.
My father was diagnosed a month ago after we have been fighting for someone to listen to us for over two years and no one would listen or even cared despite us explaining his symptoms (apart from a tremor, he is textbook)
His right hand side is severely affected and when he walks, his right foot doesn’t quite make a full step which manifests in him looking very unsteady and makes his mobility pretty poor. His right arm and hand also has rigidity and again lack of movement. He has been put on sinemet and the dosage was doubled after one week but it has done absolutely nothing.
He is pretty much housebound and is deeply upset. The other significant issue is that he has crippling back pain that is the main reason he is unable to walk. He has tried all manner of painkillers but nothing touches it. He can walk for around 1-2 minutes only and has to sit down. He is absolutely refusing to use a wheelchair. Please if anyone has any advice I would so desperately appreciate it. I have a little boy who’s 6 and it’s his only grandson and all he wants to do is make some memories with him.
Hi, @Sammykins80. Welcome to the forum, though I’m so sorry for the circumstances that have brought you here. It sounds like it’s been an incredibly frustrating and upsetting time trying to get answers for your dad, and really hard to now see how much he’s struggling.
You’ve done exactly the right thing by reaching out here. Our community has so much lived experience, and I’m sure others will share what’s helped them.
While everyone’s experience of Parkinson’s is different, it can sometimes take a little time to find the right medication and dosage, so it may be worth speaking with your dad’s Parkinson’s specialist or nurse (if he has one) to let them know the Sinemet doesn’t seem to be helping so far.
Pain can also be a symptom of Parkinson’s for some people, though there can be other causes too, so it’s important that his severe back pain is looked at properly, especially if it’s having such a big impact on his mobility. We have some information here that may be helpful.
If you or your dad would like to talk things through, our free, confidential helpline is here for support on 0808 800 0303, and you can find out more about our support services here.
I’m really glad you’ve found us, and we’re here to listen
I would agree with Candice who has given some good advice as a starting point.
It does sound like a very distressing situation and picking up on comments Candice has made, I would strongly encourage you to go back to his medical team regarding his medication. Getting the medication right is pretty much trial and error - what suits one person with Parkinson’s will not suit another - and some have to have several attempts before they find the regime that works for them. This can of course be frustrating and depressing as well as time consuming but it is worth persevering as when the right combination and dose is found it can make a big difference.
You mentioned he won’t use a wheelchair - does he use any walking aids? Does he have difficulty in getting up from a chair or in / out of bed, bath or anything like that. If you have not already done so, and if he agrees, I suggest you refer him for an assessment by an occupational therapist. You would need to contact the Adult Care Services at his local council. He or she can look at all sorts of things in the home that will make it easier for him to manage. This is important as by simplfying things like getting up from a chair for example, he will save a bit of energy and this will give him some leeway when it comes to his walking etc. He may also benefit from an assessment by a physiotherapist - which I think I am right in saying most are referred by their GP.
You also haven’t said much sbout his circumstances - does he live alone/close to you for example - you don’t have to of course you can post as much or as little as you like, but sometimes a bit of background will help with replies as it gives a bit more context to the issue
Hope this gives you ‘somewhere to go’ to begin getting things sorted and giving him back some of the life he seems to be losing / has lost.
I had severe pains in my legs and a trmor I went back and forth to the doctors for about 6 to 9 months. I decided to see a chiropractor and was diagnosed with disc problem in my back and probably Parkinson’s, both were later confirmed.
