Anyone that knows me will tell you without hesitation I am stubborn to the point I will cut my nose of to spite my face in certain situations. Asking for help is so hard for me. I am much more of a sit and scratch my head, figure it out kind of person. Unfortunately I can’t be like this as much with this. Its not just me it affects.
Now we are still finding our way. I don’t have all the answers. Hell I’m not sure I have many if I am honest. So let me waffle on about what I do know. It won’t take long I promise.
I approached our GP’s before the Parkinsons diagnosis to get myself listed as my husbands carer. Our local council has a carers scheme that has a support network, card for discounts provided by local businesses and they run groups, training sessions and they touch base with carers now and then to make sure they are doing ok. They publish a booklet twice a year with contact details for groups and organisations, stories from other carers and a diary of meetings which have representatives on hand to provide help with forms, applications and such. I know a few other local councils have a similar scheme so have a look. It is a good starting point for future reference.
I am finally (I had to chase the GP’s more than once) on his records as his carer. It makes it slightly easier dealing with hospital appointments and it is supposed to assist with talking to the Doctors. This sadly is not proving to be true. We are still trying to get this sorted with our surgery. Be prepared to fight. Things you should get without asking you may have to chase. Funds are tight we all know that and they are not forth coming with information. You need to go looking.
The Parkinsons site was one of my first points to check out. They list local specific groups designed to help with the patient and the family members. None of them are really local to us and all are run during the working day. I have kept the details in case I need them. Make yourself a list. A book with all the information you find along the way. Bookmark the sites as you find them. You might not need it at this moment but better to have it to hand rather than to have to go searching for it when you have a question. You know how it goes: now where did I see that?
The consultant suggested exercise as a good way to keep mobility. With his other health issues this for us is not straight forward. She suggested cycling but not on the roads. Exercise bike time! Now my sister went and acquired the one my Dad had. It needs some TLC as it has been sat about for some time. My husband tried using it when I was at work. Yes I am eye rolling as I type this. It didn’t end well. He nearly fell off!!! That is on the back burner for the moment.
Swimming is something we used to do a lot when we were first married. Again OAP groups, (sorry love) are during the day unless we want to do an adult swim early on a Sunday morning. I’m sorry but I have a 5am alarm for work I do not want one on a Sunday too. We need to have a think about that too. I am trying to find local exercise groups that are specific to his needs but as yet no joy plus he isn’t one to mix easily. Lucky he has an allotment that he can potter about on so he is getting out and about but with the weather turning and winter on the way I do worry he will be more housebound.
There are social media groups that are dedicated to Parkinson. I’ve not looked a lot at these for two reasons. One I spend way too much time on social media; husband would be the first to nag me about this and secondly the few bits I have seen seem to have a lot of adverts claiming to have the answers to make you healthier than before your diagnosis. I’m not saying don’t check them out but please go in with your eyes wide open. The support group ones might be the right fit for you but not for me. So I am going to keep looking to see what is out there. If I find anything good I will let you know E x