Verna’s Victory

2010-09-02 00:00

THESE days it is fashionable to celebrate the life of someone who has died, unlike in the past where we just mourned that person’s death. Well and good, it is mentally healthier to do so.

But there are exceptions. And I think the death of my wife Verna is one of these exceptions. In her case, it was a universal celebration of her courage that was expressed at her memorial service.

This is a short history of an apparently robustly healthy woman who, 26 years ago, was diagnosed as having Parkinson’s disease (PD).

The first indications of the disease were hardly discernable. One day, I noticed that Verna did not swing her right arm when we went on our routine early-morning walk with our dog. This caused neither of us any alarm, but we thought it wise to get a doctor’s opinion.

He said that we had better get a CAT scan, but was fairly sure that it was Parkinson’s in its early stage. And so it proved to be. Medication was prescribed — a very light dosage of Sinemet three times a day. The physical symptoms were hardly disabling at this stage — but perhaps she was a trifle more clumsy when things needed careful handling.

We knew nothing about this disease at first. The neurologists were helpful in describing PD and competent enough in providing the medication which moderated the early symptoms, and we just got on with our lives.

In Verna’s case, the progress of the disease was slow. Obviously the loss of dopamine in the substantia nigra was not as sudden as it can be in other PD patients. This was perhaps a mercy because it gave her the time to adjust to the progress of the disease.

Nevertheless, the progress was remorseless and over the months and years, new medications had to be prescribed — not only to arrest the dystonia and dyskenesia (jerking arms and/or legs), but also to allay the side effects. A balance, which could not be prescribed too formally by the neurologist, who said that it had to be left to the patient to adjust medication almost hourly to combat the mix of symptoms, had to be found. It is well established that no two Parkinson’s patients have the same hourly, daily or weekly patterns of the effect of medication.

In the mid-nineties, having heard about the re-established procedure of pallidotomy being practised by well-known neurosurgeons in the Transvaal and the Cape, we went to Johannesburg for a consultation with Dr Snickers, after our neurologist had declared that Verna was a good candidate for such a procedure.

Verna’s severe symptoms at this stage were dominated by an uncontrollable right- arm dyskinesia. Snickers ordered a CAT scan to pinpoint the precise area for attention. Verna was then placed in a special chair and, after shaving the hair off a section of her scalp on the left side, was given a local anaesthetic there. When this became effective, the surgeon drilled a hole in the skull prior to the next step. All this was done while Verna was fully conscious, which was very necessary for the next stage.

The surgeon inserted a special probe and moved it down through the brain to the part where all the nerve structures exist for all the senses of the human body.

In order to reach the precise point where the initiating nerves, involving the loss of control were situated, he would minutely move the probe until he touched that precise site, the globus pallidus — then he would destroy it with a small electrical pulse. Verna­ had to be alert and she had to respond to a continuous flow of questions from the surgeon, thus checking that no other nerve centres were being affected. Of course, the flailing of her arm would cease when he hit the right spot, then he would blitz it.

This happened and the procedure was at an end.

She took time to regain her mental and physical equilibrium, but all was well as regards the flailing right arm. Now it could be a useful part of her life again.

We returned to Natal. However, pallidotomies are not a cure. Although it helped mobility­ considerably and the once-flailing right arm became more controlled there- after­, restlessness and badly disturbed nights were still major problems. I still worked and had to go to Durban several times a week and it was necessary for me to get sleep. We decided to place Verna in a retirement home just down the road from us, where she would spend the nights and the days when I was in Durban. This worked well, but Verna was most unhappy, so after three months she returned home and I gave up going to Durban by resigning from the Johannesburg-based company.

PD is remorseless. No amount of medication, change of pills or periodic adjustments could do more than provide short-term moderation of any symptom, and the disease progressed slowly, but surely. We did have times when calm descended on us, but these seemed to be like the quiet in the eye of the hurricane for we knew worse was to come.

And it did.

Slowly, and day by day, almost insignificantly, her stance began to deteriorate and over the later years, despite exercises, her backbone became distorted and she acquired a right-leaning hump. She semi-crouched when standing.

Other symptoms affected her quality of life (see box). By June 2006, her mobility became very restricted and the walking aids became more of a danger to her rather than a help. The day-care woman, who we hoped would alleviate our stress, could not manage and it all got worse. With an intense sense of failure on our daughter Andrea and my part to cope, we had to put Verna into frail care. I had, by then, become unable to care properly for her as I was nearly 80 and badly affected by emphysema. And Andrea, who had come down three years before solely to look after her ageing and more-and-more disabled parents, could not help during the day because she had to work in town.

When Verna went to Sunnyside frail care, she knew that this was the end of the road.

It was a long, long road, which she had valiantly trodden with heartbreaking courage and had twice asked for final relief. She was very, very tired of the journey and the daily fight to stay with us.

We saw her every day — always one or other of us, but usually both.

But now Verna had begun to travel on a different journey and was less and less aware of us, or so we thought. By now communication was mostly through eye contact and hugs. But I think she was preparing herself for the immeasurable relief of death.

By mid-November she had lost her appetite and did not want to be taken into meals.

On her last day, I saw her before midday and she was having great trouble getting rid of the thick, cloying phlegm from her lungs.

Neither of us thought that we had just said our last goodbyes to our beloved Verna.

At 4.20 am the next morning (Thursday, November 16), we were phoned by the night sister who gave us the news that Verna had died an hour earlier.

When we got there, she was lying uncharacteristically motionless under the counterpane. I gently pulled back the cover from her face. They had tied a soft cloth under her chin and over her head to hold her mouth closed. With my heart bursting, I kissed her forehead which was still warm, and said I was so sorry that we could not have done more for her.

It was this courage and stoic determination not to give in or complain about this devastating disease that gave her the victory.

We arranged for Verna to be cremated.

The day of the memorial service dawned most unpromisingly —– mist and light rain. However, it cleared wonderfully to become a day Verna would have loved — and probably did, because a butterfly flew in and landed on Andrea’s knee, stayed a brief moment, flew off and returned to do the same again before going on its way. We are still convinced that it was Verna’s presence and were deeply moved by it.

What is Parkinsons Disease?

PARKINSONS disease is a degenerative disorder of the central nervous system that often impairs the sufferer’s motor skills, speech, and other functions.

Symptoms of Parkinsons Disease

Some of Verna Kirkpatrick’s symptoms.

• Stumbling gait — especially in confined spaces, almost freezing at times, and movement particularly stressful when changing direction.

• Falling.

• Restless leg syndrome — this varied from discomfort to very distressful levels — destroying sleep entirely with rigors.

• Constipation — unless aided by suppositories and/or enemas, nothing occurred.

• Posture — s he slowly acquired a permanent crouching posture and found it impossible to stand straight or even sit back comfortably in a chair,

• Insomnia.

• Speech — this became much worse and others battled to understand her.

• Swallowing — the peristalsis muscles were affected and could go into spasm at any time when eating.

• Mental condition — perhaps the only merciful thing about PD – it seldom affects intellect. Verna understood all conversation and managed advanced crossword puzzles until PD was further along. Mild dementia occurred.

• Attitude — depression seemed to be pervasive during the last six months, but she successfully controlled or hid this.

Despite having a walking frame and a wheeled aid, she did not demand help enough, preferring to manage all she could without help, and consequently had unnecessary falls or accidents.

Coping strategies to ease the pain

• PARKINSON’S disease (PD) patients should always visit their neurologists on a regular basis in case their medication needs revising. It may be a long relationship, so a team spirit between the neurologist, the GP and the pharmacist would really be ideal. All the medical team players should be taken seriously, the neurologist, pharmacist and GP.

• The basic prescription drugs should be adhered to with variations only permitted in consultation with the experts. Advise the doctors of any side effects, which can usually be controlled easily. The more patients know about how each drug works, the more comfortable they will be with their daily dosages. Never add over-the-counter drugs without discussion with the doctors.

• Regular daily exercise is most important, but PD patients should discuss how much and what sort of exercise should be taken with their neurologist or GP. It is more pleasant if patients exercise with a friend or in a group and they are more likely to stick to it.

• Eat and drink healthily. Concentrate on foods low in fats, sodium (salt) and sugar. High-fibre foods will help to avoid constipation. Fruit and vegetables are a must. A chat to a nutritionist would be a good idea. Avoid alcohol and drink plenty of water.

• Be safe. PD patients have difficulty with balance and need to take care when moving about the home. Hand rails, grab bars especially in the lavatory and/or bathroom are a necessary installation. PD patients should wear sensible, low-heel, non-skid shoes or slippers.

• Be patient. One of the effects of Parkinson’s is a slowing down of physical response, and more time is needed to accomplish just about any movement. Patients should never be hurried. It could lead to an unnecessary and damaging fall. Dressing may require help.

• Keep active. PD patients should try to stay in the game as long as possible. The early stages of PD will allow patients to be reasonably independent but they should always tell someone where they are going.

• Get a hobby. PD patients should join a book club or a bridge club — anything absorbing to take their minds off their physical state.

• Sleep well. Sometimes this is not easy. PD patients should go to bed at the same time every night. A habitual pattern helps against insomnia. They should try not to take naps during the day.

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