Elisabet - Interview 08

Age at interview: 67

Age at diagnosis: 50

Brief Outline: Elisabet was diagnosed in 1990. In 2006, she had deep brain stimulation which was successful and has improved her symptoms considerably.

Background: Married, 2 children, still working as a nutrionist.

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For many years Elisabet had unexplained pains on one leg and her legs were different temperatures, one warm and one cold. Then she noticed while sitting on a beach one day that one leg was shaking. Over the years, the tremor spread slowly to her right arm and then to the left side. She had frequent bouts of depression which were only relieved by increasing doses of levodopa.

 

Elisabet was put on a waiting list for an operation called deep brain stimulation in a hospital nearby her in Norway and to her surprise was offered a chance to have the operation very rapidly. She was glad she did not have long to think about what it involved. Although she had to be awake throughout the day long operation so that the surgeons could check that they were in the right spot, she was kept comfortable and was not anxious. Electrodes were inserted into her brain. The battery is expected to last for 5-6 years after which it will have to be replaced. She is always aware of the battery which is situated in her chest and is afraid of dislodging it. She has to mention it in airports as they could be damaged by the screening process.

 

She was concerned that the operation would affect her intellect, but apart from a problem occasionally finding appropriate words she doesn’t feel it has. She sleeps well for the first time in her life. The tremor is barely a problem now and easily controlled with small amounts of medication.

 

Elisabet had been having a slight problem driving a manual car before the operation and lost her driving license after an incident but was allowed to have it back so long as she reapplies every two years. Since the operation she no longer needs to drive an automatic car.

 

She finds it frustrating that the neurologist, the physiotherapist and the neuropsychiatrist are interested in different aspects of her situation and she feels that none of them are seeing the whole picture.

Elisabet feels that neurologists, physiotherapists and psychologists would learn much more about the condition if they worked as a team.

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.

Elisabet continued with lecturing even though she had to explain to the audience why she was shaking.

Oh I was often speaking and giving presentations and I used to say that, I used to start by sort of [laughs] attack is the best defence, so I told people I, I said, “You will probably notice that I’m shaking a bit. That is not because I’m nervous or afraid of you, but I have Parkinson’s Disease.” And I could then see a ripple through the congregation, ‘Oh what a heroic woman,’ and then they forgot. And I said, I also usually said “Please try to overlook it as I do,” and I could again see that they were impressed. And then they did overlook it, so we laid that to one side. But of course sometimes I got so dry mouthed that I had to ask for water, that was a side effect. But apart from that my little introduction usually did it.

Before her Deep Brain Stimulation operation Elisabet often forgot to take her Sinemet but her symptoms soon reminded her.

I kept forgetting and I had to be reminded. I had clocks and I tried boxes and I tried various smart contraptions to remind me, because as long as the medication’s worked I didn’t think of the disease. And then I let too long time pass and then suddenly I would begin shaking and I had to wait until the medicine worked and I managed on several occasions to forget to take the medicine with me when we were going on holiday or out travelling. And I have a wonderfully patient husband who has helped me get levodopa in the most unlikely places, such as, Australia, Rome. So I know all about how you can get a prescription drug in various parts of the world. But that was again the denial I think. That when I packed I thought of everything apart from what I should have for my disease. I have never talked about it but that’s also part of the denial, and whether it is healthy or not, I cannot say. I had friends. I had one friend who insisted that I should become a patient like she was. She committed suicide a year ago and I think when disease becomes too overwhelming, it’s hard to bear. And it may be better to deny, I don’t know.

Elisabet was aware that something was wrong but didn't allow herself to consider that it might be something serious.

I looked at my legs, I was actually sitting on the beach and one of the legs was shaking but it gave me no associations. So when I was diagnosed I wasn’t shocked or anything I was, I just accepted it. And I think acceptance has been acceptance and denial, both have been my attitude to the disease. Acceptance of the fact that I, I was suffering a lot from tremor but denial that this in any way influenced me. I had a job at that time which was quite demanding and I continued to, to let me be in demand and I was responsible for a [public health] programme.

Elisabet notices changes since the DBS, including a new found ability to fall asleep at night, but she is most impressed by the reaction of her friends.

I’ve had some fantastic effects. All my life I have had sleeping problems. Suddenly I can, when I go to bed at night I fall asleep [laughs], quite simply. And to an insomniac, which I have been since I was a child, so it’s something familial perhaps. But it’s so fantastic [laughs]. Apart from that, I don’t think well the, the tremor has gone, or is being kept in check by very small doses of a different or a differently working drug. And I am in need of no Levodopa and I think that just as earlier I have good days and bad, I also now have good days and bad, but the fluctuations are much less. And therefore I often forget to take my medication. It’s not so, not as serious as it was. So that’s I think the gist of my story [laughs].

So what impact has the operation had on your being day to day life now?
 

Well you know the operation comes at the time when I’m ready for pensioning so there’s a big change anyway. And I, I can’t say that I experience, you know, it’s strange I, I don’t experience much change. But that is because of my denial of the disease in the first place and in a way I can see the change more in the reaction of my friends because they can’t stop staring at me [laughs]. And now they confess that, “oh yes I, I was really shaky before,” and they were sometimes scared by what they saw, although they didn’t tell me. And myself, I was inside, I was never shaky [laughs] I, I wasn’t much, much influenced by that disease. It never, I never allowed it to take me [laughs], so I never became a patient.

Elisabet was shocked to see people who had become dependent on someone else and preferred to remain in denial about her future.

When I was first diagnosed, I, I knew nothing, I, I had seen one person with Parkinson’s and that was a long time ago when I was a child. So I knew nothing about the disease. I read a little bit and I became a member of the local Parkinson’s Association. And I went to a couple of their meetings and what I saw there made me very depressed because people, I had mainly tremor and the people I saw there had, you know this, dyskinesia. I had a little bit of that but there were people with large involuntary movements and with rigidity, stiffness, they froze. And I have mainly the tremor which was in a way bad enough but also very lucky because my movements, my moving about was in no way hampered. So I stopped going to the meetings of the association although I’m an organising person, I, I felt that was too much. That was too depressing to see how that many people were, and also there were men with very helpful spouses and I thought ‘Oh my God to become so dependent on someone else. That’s heavy.’ So my feelings of acceptance was simply maybe the denial in another form.

Before her DBS operation Elisabet had to learn to use her left leg when driving her automatic car. She was once wrongly accused of drunk driving.

I’ve been a driver since I was twenty-one and got my licence and we have an ordinary car and I had difficulty using my right foot because of the shaking. So I learned to, it was an automatic gear car and I learned to use the left foot. But now, when I was dyskinetic which I was sometimes, I did find I had to concentrate very much to keep on track and maybe my driving was a bit unsteady. So once I was haunted by a lady who insisted that I must be drunk and there she even managed to get the police to believe that. Actually I wasn’t drunk of course, but I had forgotten to tell the police that I had Parkinson’s. So he discovered that and felt so elated about his finding that he took my drivers licence. So that was a, a bit of a setback but I got it back but with the message to get a new one, a new licence or a permit every second year, which was okay. I mean you need to keep an eye on these people.

But after the operation of course my right leg didn’t bother me any more, so I could shift back to the right leg and I’m not dyskinetic so I’m back to my normal driving. And well, still I have to go every second year and that’s okay but that’s a total normalisation of a function, I must say. And it’s very good for, because we have a veteran car which is not automatic and I’m the only person who can, can manage to gear down so my skills are needed.