Bob - Interview 22

Age at interview: 55

Age at diagnosis: 51

Brief Outline: Bob was 51 when he was diagnosed. He has tremor in his right hand and is slower at doing things. He continues to work full time.

Background: Married, 2 adult children, working full time as a technical author.

More about me...

Five years ago, Bob noticed a slight twitching in the little finger of his right hand and that he was feeling more tired and sleepy at work. At first the GP diagnosed familial tremor, but his tremor continued so he was referred to see the consultant at the local hospital. Bob was shocked when he was diagnosed with Parkinson’s Disease, but went about telling the people that needed to know. He carried on and coped as best as he could.

 

Last year when he was taking one of the drugs from the dopamine agonist group, Bob had a psychotic reaction to it. In the process of recovering from this, he realised that he hadn’t addressed all the feelings he had about being diagnosed with Parkinson’s Disease. His self confidence had been shattered and he felt that he wasn’t the same person anymore, and that people viewed him differently. He encourages others not to bottle up their feelings but to talk to others. To realise that although they have this diagnosis, they are still the same person, and importantly that people around them do not view them any differently now they have this condition.

 

After reacting so badly to the dopamine agonist, Bob now takes a new medication, which works well. He is limited in the type of medication he can take, so it wears off quite quickly. His main symptom is tremor in his right hand.

 

Bob works full time and believes a positive attitude is important. He finds different ways of doing the things he did before. He thinks it is important not to give up on hobbies but to find new ways of doing them. If he can’t do something one day, he will do it the next day. 

Bob has learnt to maintain a positive attitude because that way there is still so much he can do...

In the last five years, I’ve gone through a lot of, the biggest thing I’ve had to deal with apart from more physical problems that I have to think about.  But the main thing is losing my positive attitude. Really not thinking of myself in the right way and thinking the wrong things. Getting into a situation where I came to terms with the condition and saw it just as that, me with a condition that I can deal with. So I that’s the only thing that I’ve really had to deal with. There are, I was never built for speed anyway, so that doesn’t notice so much with me. So I do things at my own pace. If I can do things I’ll do them and if I can’t I’ll do them tomorrow or, but I think it’s important not to give up on things. It’s important with things like hobbies and being positive. And getting out not, not just sort of staying at home. But to do, just do things at your own pace.

 

Maybe start planning to do different things, things like reading. Some things like large, large newspapers are difficult to handle but with things like books, reading is a good therapy. So there’s lots of things that you can, swimming is very good for you as well, you know, you’re not going to be able to perhaps go running like you used to and things like that. But there are lots of other things you can do.

Bob did not at first realise the importance of talking to his wife about his fear that he might...

I think when it comes down to it, a very important thing is the way that you deal with these situations with your partner. Because I think a man or a woman has to deal with different situations in life. I can only obviously talk from a man’s point of view. But I think possibly it might be slightly male chauvinistic to say this as well, but a man, a family man, sees himself as the strong person, the strong person in the family and when that is threatened by something like this, may be in your own mind you think “Well what if I can’t do this and I can’t do that? What if my wife has to do things like help me in the bathroom and stuff like that.” It’s just things you’ve never thought of before and these things come to you. And I just didn’t deal with any of these things. I just let them wallow in the back.

 

But when I was poorly a year ago, everything came out. A whole, everything came out. I laid everything on the table and I said a lot more than I probably meant to say. But it helped so much. And all I can say is to people you don’t have to go through that experience. But it will help you a lot if you do address situations that are in your head, and to talk to your partner or to your parents. And if, if you cry and if you get upset it doesn’t really matter. It just needs to be done and, and then you’ll realise from what they say that what I’m saying is true. That it doesn’t make any difference. They don’t see you any differently. Perhaps only you see yourself differently.

Bob had a psychotic reaction and had to be taken off his medication.

Unfortunately, last year I was taking a certain type of medication to treat Parkinson’s. It’s what they call, it’s from a group of medicines called dopamine agonists and sometimes with Parkinson’s, medication has to be tried out to find out if you can cope with it in the right way, as with any condition. Unfortunately with dopamine agonists I did suffer, maybe based on what had happened before, but I suffered a psychotic reaction which was quite severe. And a few things happened, but I ended up having to, I had to go to hospital and I was I was in a ward, a special ward in hospital for five weeks being treated for the psychotic episode. During that time I actually came off Parkinsonian treatment completely and it would appear that the problem in my case was the fact that I didn’t actually get on with this group of, this group of medicines. So since that incident, I’ve now been prescribed a different type of medication which, which does work for me and it works quite well.

Bob feels he can rely on his neurologist. She is easy to reach and understands him.

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.

Bob has advice on organising your wallet and some lateral thinking on clothes.

Yes yes there are things like experiences such as going to a supermarket, which is a prime one for me. Bearing in mind that your tactile skills can be affected, they’re usually affected by Parkinson’s, your fingers are not quite so nimble as they used to be. When you get to a checkout, you can get into a situation where you start to panic a little bit because you can’t get money out of your wallet, you can’t get your credit cards out. And then this is commonly what people call panic attacks. But really it’s, it’s often a case of your own perception of panic. It’s not shared by the people behind you and you sort of think, you think, you’re aware of how you feel inside, but people that are behind you, just think that you’re just somebody sorting out their wallet, you know. So there are ways around it. Things like, the type of things that I do now is I arrange things like credit cards and bank cards and things like that, I put them in places that they’re in the front of the wallet, places I get to them. If I have to get money out of a purse, if you’ve got like a sort of pouch type thing you can get into it easier. And if you’re given change and your cards back and you can’t get them into your wallet, you can always take them away from the area and just put them on, go to a table or a chair that is nearby and just put them in. Things like that.

 

Sometimes the same type of things that you can get problems with dressing and undressing but hopefully if you’ve got a partner they can help you with that. And there are ways around helping yourself as well if you, for instance, if you, unless you’ve really got a preference for tie up shoes with laces, you don’t have to have tie up shoes with laces you can have Velcro or elasticated fitting. I’m not trying to conjure up too bad a picture here. It’s just these little things. They are just little things. They are more irritations than some really big thing in your life. It’s just things that you have to, you have to sort of just deal with in different ways and so it’s lateral thinking sometimes.