Parkinson's disease

My GP here is a young GP, he’s new to the practice. So he moved here when I moved here and I was assigned to one of the more mature ones probably because I had Parkinson’s disease and he was a very nice doctor but, you know, it was just run of the mill stuff. Well, to me it’s not run of the mill stuff, it’s my life, you know, and it’s not a very pleasant life a lot of the time. The young doctor said to me, “I don’t know anything about early onset Parkinson’s disease but I’m willing to learn if you will teach me.” You know, because he said it’ll benefit others. It it’s a learning experience and he is the gate-keeper to the resources I need. So we formed that kind of relationship and he’s been very good, you know, he has access to the small amount of services there are but it’s so diverse across the country as a whole.

I mean I remember going, just after I was diagnosed I remember going up to my GP to get my prescription and he says, “And what can I do for you?” And I’m saying, “Oh I’ve got Parkinson’s.” “Yes but why are you here?” And I thought, you know, ‘is this how it’s always going to be. Are they never going to know anything about it?’ which is pretty much how it has been to be honest.

 

As I said, I’ve got a lot of respect for the specialist consultant I see at the Hospital. I really rate her very highly. They’re always there to help. They’re always only just a phone call away and I have had this feeling that you sort of develop as a team. That’s certainly the way that it’s happened with her. And she always seems to have a genuine interest in where I am and she gives me some ideas about the way I’m going in the future. So I’ve always got that information. I found that really useful and think it’s a two way thing. And it does also help you in the fact that you feel that you’ve got that level of support. But that’s very much down to her integrity and her interest as a person. But that does come through and I think if I had somebody who was slightly more sterile and, you know, it’s like having a, not a casual conversation, but it’s understanding your lifestyle as a patient and what works for you and what doesn’t work for you. So there’s possibly more than a medical interpretation that’s needed. There is an interpretation that you have to understand. You have to get in to the person psychology as well, which is perhaps difficult to, to explain. But that, that’s definitely how it works for me. And because I’ve got good relationship, it helps me and it gives me confidence in, in the information I give and the decision making. I’ve got confidence in that.

I am constantly surprised by the neurologists. They go after neurological symptoms. My physiotherapist goes after muscular symptoms and I experience in addition, cognitive and other symptoms and feelings that together all of this is the illness. And we have now one specialism taking care of each of these compartments and that’s somehow frustrates me. And I wish that one day the neurologist would reach out to the physiotherapist and say “Ah, this must be the reason why that is the result.” And now that we have this wonderful deep brain stimulation possibility of abating some of the symptoms, maybe it could be done even more targeted, if they understood why this neurological function has that muscular result. So I’m actually asking for a Leonardo Da Vinci.

I mean I got my own car park space. What would I like to eat. What sandwiches do I like. So I come in, turn up, park the car in my car park space, walk upstairs talk to the lady at the desk and then come home again. I have never seen so quiet and easy going life then actually doing that, because when I go to the National Health. I was in the city I was sitting down there in the cubicle at this time and I looked at the place and there was blood from the wall, spurted up the wall and the ceiling and I thought oh God. And then a little bit later a patient died in the place, in whatever ward it is, or whatever area it is and we all got closed down and sent home. We got told it would be quite a few hours yet. So I got in my car and came home. So there is a vast difference between private and National Health. But I must admit there is not a lot of difference in treatment.

The other person who has been a great help has been the local Parkinson’s Disease Nurse Specialist and she’s very accessible. I can ring her up and if she’s in the office I can go and see her almost immediately and she’ll talk over problems with me, suggest solutions and I feel much happier when I’ve seen her. Whereas to see my specialist in [town], although they have an open access appointment system so I can turn up on a Wednesday when they hold their clinic and see him at some point, it’s not as convenient as ringing up my Parkinson’s Nurse. I’m quite happy with the National Health Service what they’ve done for me and my Parkinson’s.

The physio was brilliant, it gave me, it taught me how to break the spasm, gradually increase the use of my left arm, improve my mobility by going up and down the stairs and it was wonderful as long as it lasted. I did so well on that and with the drugs that it stopped after a while but I gather it's rationed anyway round here.

 

 

Oh that was wonderful, made me much, obviously I could do things in the water. Most of it probably was to do with confidence but it was confidence and increased mobility so that I was more stable for walking, I had a better gait.

It’s so important there’s a multi-disciplinary team for someone with Parkinson’s. They can’t just rely on one person to look after them who, who sees them for twelve minutes every six months or something. It just can’t work like that because someone needs to be monitoring them and actually they should be monitoring themselves as well. There needs to be more self-assessment in Parkinson’s, and patients looking after themselves, engaging more in their own illness, communicating with their clinician, with their nurse specialist, with physiotherapists, all the team they need to have a whole team around them to look at the various aspects of the disease and to really be there to help. Because it’s not just about tremor, Parkinson’s it’s a whole different, there are all sorts of other things, behavioural, there’s muscle that, there’s sexual problems, there’s, dribbling, there’s constipation. All these, tons of things which are all involved with Parkinson’s which people just don’t think about and it’s only recently now that patients have actually kicked up a bit of a fuss about these things that, that actually neurologists and, and eventually pharmaceutical companies are taking notice and providing the treatments that are necessary, that are actually, you know, physically and mentally affecting patients with Parkinson’s.