Huntington’s patients should make regular physiotherapy exercises. The aim is to delay functional disorders and undesirable developments in the body as much as possible. This is done through active physical exercise and passive measures such as massages and stretching exercises. The physiotherapist puts together an exercise program specially tailored to the needs of the patient. Huntington’s disease patients should not only do these exercises with physical therapy but should also exercise regularly at home, preferably together with their relatives.
In addition to active exercises, baths or massages also help many sufferers.
Speech difficulties can best be influenced by targeted speech therapy training. Treatment should begin with mild speech disorders. Therapy aims to keep the patient intelligible for as long as possible. Parts of the treatment are targeted articulation exercises, optimizing the use of breathing and voice, and correcting the speed of speech. Speech therapy is accompanied by language exercises. These are intended to activate both language understanding and language use. Comprehensibility remains an essential purpose of these language exercises, and the patient is constantly re-stimulated in this regard. Huntington’s disease causes the patient to become more and more incomprehensible when speaking. At some point, language has become unusable as a means of communication. Therefore, other communication options have to be found. Theoretically, there are various alternatives, such as tables of letters or words, books with drawings, photographs or words, non-linguistic yes or no answers. In practice, these communication aids can help individual patients.
In addition to the language exercises, correct swallowing can also be practiced and improved. These exercises are particularly important because swallowing disorders can be very dangerous for the patient. The so-called facio-oral tract therapy (FOT) has proven itself here.
Since experience has shown that long waiting times for speech therapy treatment must be accepted, one should seek such treatment early on.
Everyone needs meaningful occupation. If the HD patient had to leave his previous work environment, he should look for meaningful, joyful occupation with his relatives. Here occupational therapy can provide important help. The focus is on skills such as endurance, concentration, time management, cooperation, gross and fine motor skills. In occupational therapy, manual skills or creative activities can be practiced in a targeted manner.
Even simple everyday activities such as eating, drinking, washing, dressing and undressing, planning the day, or shopping can be practiced with an occupational therapist. In this way, the person affected can remain independent for longer. In addition, the therapist can show where aids such as splints, walking aids, wheelchairs, and dressing aids can be used sensibly.
Regular brain training has also proven effective in Huntington’s disease. The special training, which is individually tailored to the patient, enables targeted support and improvement of mental performance. After a detailed diagnosis of existing and impaired abilities, an individual therapy plan is drawn up with the patient. Both computer-aided training methods and worksheets can be used. The program should be put together with an occupational therapist or neuropsychologist.
The following areas can be specifically promoted as required:
Another accompanying therapy is relaxation techniques such as autogenic training or progressive muscle relaxation.
With progressive muscle relaxation, various muscle groups are systematically tensed and relaxed. Progressive muscle relaxation is very easy to learn. There are cassettes and CDs on the market, which precisely specify the exercises.
Autogenic training is self-relaxation through autosuggestion. One imagines calm and relaxation intensely. The training consists of many different exercises. Autogenic training should only be learned under professional guidance. Many sports clubs or adult education centers offer courses.
Breathing exercises: Most people breathe inadequately and unevenly in stressful situations. Breathing, therefore, plays a major role in all relaxation techniques, because calm, conscious breathing has a calming effect and thus contributes to balance and inner peace. Even patients at an advanced stage can still do breathing exercises. There are respiratory therapists with whom you can learn special breathing techniques.
The interaction of physiotherapy and self-help is much more than training an osteoporosis group. Therapists are not ‘just’ trainers, they are also important partners and fulfill a double function: in addition to being trainers for our osteoporosis groups, they are also sought-after contact persons for members with physical problems. Trainers, consultants, and sometimes even friends and group leaders with long-term support – reason enough to include topics on this page that may be of interest to the physiotherapist.
Around 80% of the trainers in our groups are trained physiotherapists. And around half of them work in their own physiotherapy practice, so they are also independent entrepreneurs – and are confronted with business issues. The same applies to the related health professions such as occupational therapy or osteopathy. Chiropractors, masseurs, or physiotherapists also think about how they can stabilize and secure the situation in their practice. Perhaps you also ask yourself the question now and then: How much of the success is due to work (actual physiotherapy), how much is due to management, how much is due to marketing and advertising? For example, to win new interesting patients for the physiotherapy practice or to really satisfy existing patients. What can be done to make the practice run better? Or how can a good network be built up professionally and entrepreneurially? A network of doctors, pharmacists, colleagues from the fields of physiotherapy, occupational therapy, osteopathy, etc. In the end, the question of profit and perspective also arises for many practices. Having good practice and having more fun at work at the same time – who doesn’t want that? Here, too, we want to help where we can. The physiotherapist,
Regulations always fall back on contractual agreements and these agreements require, functional training, among other things, a corresponding qualification of the trainer: the certificate of trainer osteoporosis gymnastics. If this qualification is not available, the health insurance company can refuse to pay for services. Especially for those who receive the money or are responsible for the exercise management, it is crucial that they can personally prove a corresponding qualification.
Many believe that the certificate is an invention of the OSD. It is not so. It is part of the framework agreement for rehabilitation sports and functional training. The OSD also has agreements with health insurance companies and must adhere to these agreements or instruct its trainers and therapists that they in turn follow the generally known rules. If you, as a trainer or therapist, account for F56 services, then you must be able to prove that you own the appropriate qualification.
This not only applies to the future, but it also applies to the past. In recent years, we have seen time and again that health insurers have remuneration checked with therapists retrospectively over several years. And also ask for a corresponding qualification. As a result, it may well happen, if the qualification is not available, that the health insurers claim back fees paid. It doesn’t have to be, but it can be perfect. And that’s more than uncomfortable.
Huntington’s disease is caused by a genetic defect on chromosome 4. This defect in what is known as the Huntington’s gene causes the Huntington’s protein to be produced incorrectly. The faulty protein has toxic effects, it triggers the destruction of nerve cells and with it clinical complaints such as movement disorders, personality changes, and mental degradation.
The defect in the Huntington’s gene can in principle arise like any other genetic defect, but in 97% of cases, it is inherited as an autosomal dominant trait. According to this, children of an affected person have a 50% risk of disease, regardless of gender. On the other hand, there is (practically) no risk if the parents are healthy.
From around mid-adulthood onwards, degradation processes occur in the brain, which, although they preferentially affect certain parts of the brain, ultimately affect the entire brain. The first symptom is usually a change in personalities such as increased irritability or depressive moods. In the further course, the full picture of the disease with the typical, choric movements develops. These include, first of all, the sudden “over movements” (hyperkinesia) in the face and arms, such as grimacing and piano player movements. Later on, there is often a lack of words, difficulty swallowing with weight loss, and dementia. The disease progresses relentlessly and is fatal after 15–20 years.
The typical movement disorders lead to the suspicion of Huntington’s disease. The doctor carries out a thorough neurological examination and determines the degree of severity of the disorders using a diagnostic scale (Unified Huntington’s Disease Rating Scale). Psychiatric impairments such as personality changes, depression, and compulsions as well as psych neurological complaints such as memory disorders and decreased language flow are also examined and documented.
Since 1993 it has been possible to detect the causal genetic defect in a blood sample. These are pathological changes in a specific section of the DNA. The more often this gene segment is repeatedly present, the earlier (age) and the more difficult it is for the disease to break out. To carry out this genetic test, an informed consent discussion and the written consent of the patient are required.
If the patient refuses a genetic test, the doctors try to support the diagnosis with various equipment examinations such as CT, magnetic resonance imaging, or positron emission tomography (FDG-PET) or to rule out other causes (see differential diagnoses) for the movement disorders.
Differential diagnoses. Huntington’s disease-type movement disorders also occur in other diseases, such as B. after a stroke, in hyperthyroidism or Wilson’s disease, and as so-called tardive dyskinesia as a medicinal side effect in therapy with neuroleptics.
There is still no therapy; the symptoms can only be alleviated with medication, physiotherapy, and speech therapy. Many sick people are depressed; the suicide rate is increased, so close-knit psychological care is essential.
The following agents and procedures are available for symptomatic treatment:
Doctors usually prescribe tarried and tetrabenazine against excessive movements (hyperkinesia). Tetrabenazine is said to be more effective than tarried but has a less favorable side effect profile (it is said to cause depression, drowsiness, and sleep disorders, and to increase sociality). That is why doctors usually initiate therapy with tarried; if it deteriorates, they prescribe tetrabenazine (possibly also in combination with tarried). Numerous other active ingredients are being tested, with z. T. contradicting results. If drugs remain ineffective, deep brain stimulation may help. It is also being tested in studies; a final assessment is still pending.
For depression, doctors primarily prescribe antidepressants of the SSRI type, and mirtazapine for simultaneous sleep disorders.
Antidepressants of the SSRI type, antipsychotics, or clomipramine can help against obsessive-compulsive symptoms, possibly also psychotherapeutic and behavioral measures.
Psychoses and delusions often require the use of antipsychotics such as olanzapine, clozapine, or haloperidol.
Mirtazapine or hydroxycin are used to treat mild sleep disorders. In the late stage, when a possible risk of addiction can be neglected, also with benzodiazepines as well as zolpidem or zopiclone.
With the help of the predictive genetic test, relatives of the sick can find out whether they are also affected by the genetic defect. But the question arises as to which burden is greater – that of uncertainty that still leaves hope, or that of knowing that there is still no effective treatment option? Quite a few (possibly) affected people reject any diagnostics for this reason.
All others are best advised in an HD center, whereby the strict ethical guidelines for the use of the genetic test (e.g. absolute voluntariness, minimum age 18 years) are only part of the advice. However, even the best advice cannot make the decision easier.
The disease cannot be cured, it leads to death after about 15–20 years. Common causes of death are pneumonia and suicide.