Out on a Limb - Living Without Support
A a thorough investigation into the health of thalidomiders was recently published in Germany. We are grateful to Heidelberg University's Institute of Gerontology for their meticulous research - we can all learn from their conclusions. For an organisation like EDRIC, the report is useful in that it highlights how an individual's health can deteriorate when they don't have access to appropriate support, financial resources and comprehensive and appropriate care to alleviate the effects of living with limb difference. The report begins with a narrative based on the daily life of an anonymous thalidomide woman whose account is published here.
The day begins in the morning at 06:00. Showering and going to the toilet are carried out independently in the shower/WC equipped with dressing hook. In the summer, when it is hot or muggy, she needs help with putting on pants and bra as her skin does not dry properly. She also needs help during the day outside of the house on normal toilets. At times she can dress independently - loops are attached to clothes to pull them up. She can only put on socks. She does not put on nylon stockings because she cannot do that alone. For slightly more representative clothing she needs help from her husband or from female colleagues. At events outside of the house in the summer, with the exception of bra and pants, she sometimes has to be dressed and undressed again by female colleagues.
She makes breakfast herself with one limitation: she cannot peel any fruit. She leaves the house at approximately 07:30 and drives to work with the car that has been adapted to her needs.
Her working day begins at approximately 08:00. She works between six and six and a half hours per day. During the lunch break she goes to manual therapy and fango once weekly, or alternatively she does exercises on site or goes walking. If she has evening appointments (approximately one every two weeks), she extends her lunch break and lies down for 30 minutes so that her back does not hurt.
After a normal working day she goes swimming twice weekly. In order to avoid the dependence on a person accompanying her, she has overcome her shame and on the spot lets strangers, to whom she talks, help her to put on and take off her swimsuit as well as her pants, bra and vest. She needs regular intensive physical exercise daily in order to avoid back and arm pains.
She returns home at approximately 17:30 and is tired from her long working day. For this reason she cannot maintain all her personal contacts as she needs time for recovery. Her husband cooks. She sets the table independently and works the washing machine - she wants to relieve her husband by doing this. She has a home help who comes regularly and takes the washing to the laundry and irons.
"Household activities ruin the health of every thalidomide victim with phocomelia. Carrying out these activities is again the basis for not neglecting oneself and the family, and for being able to eat sensibly. As I still work full-time, I have received no classification in the first class of nursing care. Given my employment and the fact that I need a great deal of help with housekeeping, a classification barely pays. I have to work in order to be able to pay for the housekeeping support on the scale which I need."
Her mother is over 80 years old and alters her clothes. Buying an anorak or a coat is extremely protracted and exhausting. She has to devote four to five complete shopping days to the search. If she does not find anything, the tour starts again in the following winter. She has not yet found a solution for everything. People with disability of the arms, for example, for the most part, cannot wear gloves. They carry keys, handbags etc. between their fingers and in the winter the skin between the fingers breaks open in cold, damp weather. The open skin heals up badly in the winter and hurts for days on end. In addition, the increasing cold leads to longer lasting pains in the shoulder joint and in the arms.
Pains occur on exertion; working is exertion. For approximately 10 to 12 years, increasing symptoms have occurred in the region of the shoulders and the arms/hands: slowly at first - although in recent years they have increased rapidly. The limit of fitness has been rapidly reached in the meantime. She tires quickly and tries to remain fit through sport as well as through phases of rest. She tries to cure tension in the shoulder region by lying on a bobble massage ball until the pains ease. Her doctor cannot prescribe her massage - she already receives ten sessions of manual therapy and fango per quarter. As a health insurance policy holder she is not entitled to more.
The woman hopes that she can still work for a few more years. However, she will no longer manage the remaining 13 years until her retirement pension. As a civil servant she cannot reduce her working hours as she will otherwise receive deductions from her pension.
If she was not able to do any exercises during the day, exercises are carried out two to three times weekly in the evening. The physiotherapist shows her the exercises - they change depending on requirement. In the meantime severe arthrosis in the left hip joint and moderate arthrosis in the right hip joint have been established.
How will her state of health possibly develop in the next five years?
It is to be assumed that physical fitness will decrease further with a simultaneous increase in the symptoms. The need for periods of rest will increase. However, the woman will not be able to rest sufficiently. Daily routine is strictly regulated today. If there is a further decrease in capacity for exertion, the daily therapies are no longer compatible with the current scale of employment. She will have to make a decision as to whether she reduces her working hours or alternatively starts to treat the increasing pains with medication as well, which she has so far largely been able to avoid.
Within the next three years, she will have to prepare for an artificial hip on the left, with a time-consuming search for a doctor who has the appropriate knowledge and is prepared to operate on her deformed joint. She is afraid of the time after the operation. Which rehabilitation facility has experience with post-operative care of people with severe upper limb disabilities, following hip replacement? Can she pursue her employment again after the operation?
Because of the advanced pain symptoms and the severe damage in the region of the arms and the vertebral column, the distance she can walk and her independence at home and at work will possibly decrease in the coming years - regardless of the operation. She cannot use a walking aid because of her short arms and damaged shoulders. Even with non-damaged legs, she is at risk of ultimately - sooner or later - requiring a wheelchair due to the dysplasia of the hips and its sequelae, as well as the emerging muscle weakness.
As a result, a difficult turning point in the sequence of her life so far would occur; mobility, both inside and outside the home, as well as independence, are all severely jeopardised. Professional and voluntary occupations, her range of contacts and leisure activities - at work and at the weekend - could no longer be maintained at the current level. This would lead to isolation and possible depressive moods. Under these circumstances, how long will she still be able to find the discipline and energy for the regular physiotherapy at home, or for swimming? So far, she has been able to cope with her situation in spite of the myriad hurdles and obstacles. Will she manage this with additional and severe stress?
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