Fit for Fifty - does Sweden have the answer?
EDRIC's founder member, FfdN, recently launched an innovative health project to address the needs of its members - most of whom are thalidomide survivors and, therefore, well past their 50th birthdays. Hanna Isaksson has been helping to co-ordinate the project and shares the initial findings with us.
Members of FfdN (The Swedish Thalidomide Society) have, for the last ten years, been complaining about increasing problems with their health. Most of the FfdN members are now in their 50s. Our members with multiple limb deficiencies experience much more trouble with obesity and pain than their non-disabled peers. Pain in the neck, back, knees and hips are now more the rule than the exception.
Most people with multiple limb deficiencies use their bodies in a way that they aren't made for and, with advancing age, they suffer increasingly from 'overuse syndrome', which in most cases leads to pain.
It can be difficult for an uninformed person to understand what disastrous effects it has on the daily life of, for example, a thalidomider, whose hands are placed directly on their shoulders, when they have increasing neck pain. Most people with multiple limb deficiencies have learned to solve practical problems using the body in a different way.
Unfortunately, it often has a very high price - a bill that just has to be paid. For a 20 year old, who has no arms since birth, it is no problem to stand on one leg and scratch behind the ear with the other leg. But try to do that trick when you are over 50!
Even people who have lived with their disabilities their whole lives may need new solutions and some reorientation. Many people feel despair and frustration when they are no longer are able to do things independently - things that they have been able to do all their lives.
These alarming signals from our members led to the decision to start a health project with the aim to improve our members' health.
The FfdN's Health Project aims to inspire the participants to lead a healthier lifestyle and to provide them with both knowledge and practical tools for better health.
Perhaps, the project can also help younger people with limb deficiencies to use their bodies in such a way that they are not worn out by the time they reach their fifties.
When the project began in 2013, we put a lot of effort into identifying what the problem looked like and which areas we should focus on. After several meetings and discussions with many members, we decided to concentrate on:
Although our health project has two years left to run, we have already learned a lot and the project has also given us plenty of eye-openers.
The most important lessons, so far are:
1. Knowledge about how much you can eat if you have low mobility and/or lack limbs (and therefore have a much smaller 'combustion engine') was virtually non-existent among the participants. Even people who have been in contact with health care services for their entire lives, often had no knowledge of this. For example, knowing how many calories a wheelchair user burns versus a pedestrian on a typical walk: a wheelchair user burns far fewer calories compared with a person who can use the largest muscle groups in the thighs and buttocks. A wheelchair user has to 'roll' more than twice as long as someone on foot in order to burn the same amount of calories.
2. People with limb deficiencies lack someone to turn to with whom they can discuss lifestyle problems. They feel misunderstood and that the health professionals don't know how to help them.
3. The fear of making the pain worse, and of being stared at, makes many refrain from exercising in public.
4. The participants are not aware of how they can avoid pain due to 'overuse syndrome'.
5. The group lacks a 'holistic approach' to its situation. Participants stated that only the missing body parts are being treated by healthcare providers. They feel pushed around between different healthcare professionals, none of whom can see the overall picture.
Healthcare professionals seem to see the problems that people with multiple limb deficiencies experience as primarily a 'medical issue' - not a lifestyle issue, which is the case for some.
An important finding from our side, so far, is that the health problems that our members experience - in fact in many cases - can be reduced dramatically with the help of a professional health coach. The health coach can advise and support the person when needed.
Making use of a questionnaire - which also covers issues of health and lifestyle - is vital. The form currently being used misses important issues concerning weight, diet and exercise.
The project is run with the help of money from the State Inheritance Fund. Co-operation partners are the Ex-Center and Dysmeliföreningen (the Swedish organisation for dysmelia).
In 2014 the health project moves to Skåne in the south of Sweden. We look forward to another healthy year!
Tags: Dysmelia Article Thalidomide Ageing Diet Lifestyle Exercise Fitness FfdN Ex-Center Sweden Health Article