Khadim - Interview 38

Brief Outline: Khadim's Parkinsons disease was diagnosed in 2002. Although he was tried on many different treatments none of them helped. In January 2008 he was given Deep Brain Stimulation. This has been very successful.

Background: Machine setter, Married, 5 children.

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When Khadim first developed a tremor in one hand he had recently been made redundant and was therefore willing to accept his doctor’s suggestion that his symptoms were caused by nerves. However when two kinds of medication had failed to help he was referred to a neurologist. Here, though the Parkinson’s disease was diagnosed and he was put on anti-Parkinson’s medication there was still very little improvement. Over the next few years he became increasingly disabled until finally he was referred for Deep Brain Stimulation. Although he was warned of the possible risks from this operation, and he was worried- not so much about dying but about possible brain damage- he was eager to go ahead with the operation. He was given a date several months away. The operation took place in January 2008. The result has been almost complete disappearance of his symptoms. He still has some tremor which is controlled by Sinemet. If the dose of this is too high he experiences uncontrolled movements in his legs.

 

Khadim lives in an area with a quite large Pakistani community but has never come across anyone else with Parksinson’s disease. He has felt it necessary to say that he suffers from a disorder of his nerves as he feels people will not understand what is meant by Parkinson’s disease.

Khadim describes how the doctors looking after him decided to offer him the DBS operation.

…the consultant in the hospital treated me for, with some medicines, they tried, roughly eight different kind of medicines you know? Nothing worked on me, then in the end he suggested it’s, it has to be Parkinson’s, you know, because I’m not responding to any medication at all. So he still kept on treating me, calling me back in every six months and the problem was getting worse and worse and worse, more in right arm than in left. The tremor was getting bigger and more in right arm than left but both arm were shaking. I could not hold a glass of water, I couldn’t shave, I couldn’t pull a zip up, I couldn’t do or undo a button of shirt, you know, the shaking was so bad, so the consultant from my local hospital sent me to [another] hospital, you know, for consultation there. And the surgeon and the consultant, which is I believe above him, you know?

 

So they looked up on me and they diagnosed me as Parkinson but it’s increasing, by then I was about, with this disease, about two or three years I think, and they said, “Well it’s, it’s, it’s out of control now, it cannot be controlled with the medication, but you remain on the medication, we’ll enter you a Parkinson’s Disease Study.” Which they done, at that time I don’t know what it meant, but then as time went by I experienced what it meant, you know? They kept calling me in the hospital to, do various tests, you know, walking, picking things up, doing things, you know? And they kept me calling in again and then they decided that nothing seems to be working on me and I’m physically okay to have a surgery, so they thought about it several times whether go ahead with the surgery, you know, I said, “If there’s no cure for it I’ll either live with this, which is impossible, or I’ll have a surgery.” So they looked at my state, they looked at my condition, they looked at my age and whatever and they thought the surgery might be the answer because I look, I’m not ninety-five years old or something like that, you know? I look quite capable of putting up with the surgery, you know.

Khadim describes what he felt at the prospect that he might not survive the operation.

Well actually I was looking forward to it, I was, although it is scary, you know, because they, they, they pointed out it was risky, operation carries risks, you know, infections, rods not in the right place, things like that you know? It does carry risks, I said, “Well if carry risks, I’ve got to die one day so I die, I want to die, if I die on operation, operating table so be it, you know, but I can’t live with this, I can’t live with this, it’s so embarrassing, you know?”

 

...in my community the operations are normal, someone’s having a heart bypass, some’s having a back operation, someone’s having something removed, so I was considered among, among those patients, you know, and the prayers were held for me in the local mosque, you know, God make him healthy.

 

He comes back with us, things like that, you know, as well but that’s quite normal for my community, you know? I mean several people that I know have a heart bypass and I was considered that oh I’ve got this thing fitted in me the same as they fit, they fit the thing in the heart, you know?

 

So is that, I mean when you were going before you had it did you think it was quite likely that you might die?

 

Well that’s, that’s it that’s the risk they tell you don’t they? If something goes wrong, I didn’t think I would die but I thought some other things, like I end up in no brain, I end up with damaged brain, I end up mad, I end up, things like that, you know, but never thought of, that I would go to sleep, you know, that I’ll die.

 

And that must have been quite frightening to have those thoughts?

 

Not really no, no I, you see our belief is a religious-wise that whoever is born in this world has to go back to his creator. I mean dies, and that’s it, some die forty years old, some die sixty years old, some die twenty-five years old. So if you, if you keep that in mind and you and I both have to go one day then, then nothing, then no other fears attack you, you know, no other fears overpower you, you know?

Khadim remembers the surgeons adjusting the position of the electrodes during the operation.

The only experience I had during the operation was that, I was looking up at the ceiling and I could see double, double vision, you know, I can see it’s, it’s the lightbulbs, operation light [laughs] operation room lightbulbs you know? I can see, suddenly see two, you know, one becomes eleven, you know? And then they, they done something and eleven becomes one, and when it became one I said, “Oh that’s okay I don’t see double vision now.” And they locked it there, you know? That was, that was to do with the depth of the laterals I believe you know?

Khadim explains how he tried to deal with his embarrassment when he felt his symptoms were being observed.

I felt like, I felt like not, don’t go out, when I say I felt embarrassed I, if I’m sitting among, friends there, like you and two, three others there, you know, I always have this guilty conscience that they’re there watching me, my hand not shaking, and yet they are not watching I, I’m aware of that at the same time they’re not watching me but I’m saying to myself ‘ah well I’m shaking he must be watching me’ and they are not watching me, they are not criticising me’ that’s something inside me that was telling me that they are. So looking at that I was trying to be self, educating myself, you know, that, alright if they’re not worried about it why am I worried? Let’s shake you know, let it shake, that’s an embarrassment, you know, but.

Khadim applied for work but realised he was turned down because his tremor had been noticed.

...with this disease, I was still signing on at the local Job Centre, you know, and with this disease I could write and, write okay you know that I can’t write very well but I could write that very well, you know, quite fast and as normal, and I went to a job, I was offered a job and I went there and I filled the form, when I was filling a form in this, this chap who was interviewing me he noticed that my hand is shaking so he stopped the interview there he said, “Oh leave it there I will let you know.” You know? So the next thing was he wrote me a letter that sorry there’s no job, then I realised he must have noticed my shaking because in front of him I couldn’t write very well, but then, while this was happening I turned sixty, you know? And then the Job Centre people told me that, “You are sixty you can, you don’t need to come and sign you can go and, you could go on a pension credit, you know, you don’t have to come back every two weeks and sign.” So I went on a pension credit I’m, I’m a pensioner ever since.

Khadim was very interested by a television programme about Mohammed Ali and another about a British journalist who had surgery.

I only I’ve seen three programme on televisions, one was about Mohammed Ali the ex-boxer, yeah? That I heard that he has a Parkinson, due to the damage brain or whatever, and I saw one programme, the great interest, that a bloke had his surgery done in France, took twelve hours to operate, they put a cage on his head and whatever, you know, he was a journalist, British journalist. There was no cure available in the UK, or some other reason, and he had that treatment done in France and he recovered, and I watched that programme very carefully and deeply got involved in it and it looked so frightened, but then when I, when I heard that, they’ve cut the operation time from twelve hours to about four or five hours then it was encouraging that at least technology has gone advanced and, and the third programme I saw was in a local, not local, national newspaper that it say, I’ve still got a cutting upstairs, that a famous TV celebrity, you know, British celebrity had this problem and he was a cook on the TV, you know, and he used to cook brains and ears and, God knows what you know? He said it was a time that it’s his brain is being cooked, you know, you know? So he had a surgery done and, he explained in the newspaper, you know, he wrote the article himself, you know, that he’s feeling a lot better compared with what he was before, you know? Eating with the family on the dining table and the spoons flying away and things like that you know?

Khadim plans to travel to the Middle East and is slightly concerned about how people there will react to the pulse generator embedded in his chest wall.

I’m aware of it, they’ve given me a card that I bypass the Airport Security, the household stuff like microwave, radio, tv don’t affect this. The shop detectors don’t affect this, you know when I go to shopping I will pass through the security you know the shops, you know, that don’t affect it, the only thing affect is the airport security, and I’ve been given a pass and a letter and a drawing of the thing that I have done to me, I show them at the airport and they, they’ll fingertip search you, you know, and let you bypass the system. If you, I said, “Well what happen if I go through the system?” They said, “You will go quickly through the system, quickly, through the middle, if you go slowly, or if you are stopped then it could either turn it off or it could make it faster.” But it could affect it in other words, you know?

I’m travelling next month to the Damascus and Saudi Arabia my family and I’ll show them the letter and if they don’t, you know, I’ve got an actual letter from hospital, and a drawing, and a card.
And the battery to show them.

Yeah, yeah and, I hopefully they, well these days are very, very careful. The bomb or gun or something like that, you know, but, that’s it meant to be seen that’s my first experience when I go abroad I’ll see what they, I mean British Airports no problem they know, there is something called Parkinson’s Disease, there is something called operations, stimulators, things like that, you know? But foreign countries don’t know that do they? So, you know, they, they’re a little bit iffy.