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When Judy was 36, she had a narrow escape after a nasty car accident. Her parked car began to roll forward, and when she went to jump back in to put on the brake she slipped and fell under the front wheels. Miraculously, she walked away unharmed. But shortly after she began to experience strange changes in her movement; she started to get a bad tremor, as well as dystonia in her leg. Naturally enough, she put this down to the effects of the accident, as did the many GPs she consulted. “No-one considered Parkinson’s; it was very frustrating. I knew there was something wrong but I couldn’t tell what it was but all the doctors wanted to do was to give me anti-depressants.”
Judy’s symptoms deteriorated dramatically over the next 12 months which is unusual for Parkinson’s, which generally has a slow progression. “The tremor was getting really bad and so was the dystonia, I could hardly walk.” Finally, the eleventh GP she consulted told her that she had Parkinson’s. “I didn’t have a clue what it was. I thought, well, I’ll go home and start reading about it, and it was quite scary. I went back to my GP and said: ‘So I have this disease, what are we going to do about it? How are we going to solve this problem?’ He really argued with me – saying I needed to go home and just accept that I had this disease. I was so frustrated because I’m the kind of person that thinks ‘well let’s just get on with it’. He made me feel so stupid. I think he was saying it because he had no idea of what to do with me.”
Judy’s GP referred her to a neurologist she had seen previously when trying to uncover the cause of her symptoms. “I went to see him and I think that was just the worst day of my life. He told me to go home and get my financial affairs in order because in five years time I was going to be in a wheelchair and in a nursing home. I thought my life was over.”
But Judy didn’t give up. She visited a second neurologist who had a more positive attitude. He said: ‘There is something we can do to help you.” Judy was finally on the way to managing her Parkinson’s. Her neurologist prescribed a levodopa drug which controlled the tremors and she was able to return to work with a car parts manufacturer, something she’d been forced to give up because of the severity of her symptoms. But after a number of years the drugs were becoming less effective at controlling Judy’s tremors. While she had originally been taking seven tablets daily, she was now up to 15. She also began to experience disturbing side effects such as paranoia, delusions and hallucinations.
In 1997 Judy had a pallidotomy, an operation where a lesion is burnt in the damaged brain cells to relieve the tremor. The effects were immediate and the tremor did not return. She dropped back to taking four tablets a day but over the next four to five years, Judy became more and more affected by rigidity and slowness of movement. Her level of medication began to creep up again – to the point where she was taking 22 tablets a day. Not surprisingly, she began to experience paranoia and delusions again.
Her neurologist suggested she was an ideal candidate for Deep Brain Stimulation (DBS), a reversible therapy using small implanted programmable electrodes to block the brain signals that caused her disabling symptoms. “I was a bit worried about it, but I knew that I had nowhere else to go with the medication. I was on too many and they were over for me as far as I was concerned.” Judy made the decision to go ahead with the procedure – despite some reservations about having her head shaved – and she was admitted for surgery on her birthday in 2003.
The surgery is done in two stages. Firstly, leads are positioned in the brain and their placement tested with an external high frequency generator. If this is successful in controlling the symptoms, a few days later the neurostimulator (similar to a pacemaker) is implanted.
“I went off the medication virtually straight after the trial and three days later I had the neurostimulators put in. You are awake for part of the operation, but that didn’t really worry me.” The DBS was a success and her rigidity and slowness difficulties improved. She was back down to five tablets a day. But about three weeks after the procedure, Judy began to feel down, a common experience after DBS. “You’ve got to realise you are on a real high after the operation but you do come down and you have to be prepared. You have to realise that it’s not the end of the world, because you will come back up again.”
For Judy, this down phase lasted about three weeks during which time she fell a number of times, damaging her hand. She says that increased susceptibility to falls is common after DBS, and people need to become more aware of their movements to make sure they don’t cause themselves any harm. It can take up to six months for everything to settle down. “Take your time to do things, don’t rush.”
Since then things have been “excellent” and her medication dosages remain low. “The neurologist keeps an eye on your progression and tunes the neurostimulators as he thinks is necessary, that’s the great thing about it. Mine’s currently set very low, so I have a long way to go. And I’m not having paranoia, delusions or hallucinations, so I’m having a better quality of life.”
Judy now plays a major role in assisting others with Parkinson’s and educating the community through her involvement in a Parkinson’s patient association. Six years later, Judy is changing the way the community thinks about the disease. “I want people to know that Parkinson’s is more than just a tremor and there are treatments that can help.”
The views expressed in this story are those of the interviewees and do not necessarily reflect views held by Medtronic or the EPDA.
