Support Centre for those who have ALS

Different kinds of help for those who suffer from Amyotrophic Lateral Sclerosis (Lou Gehrig's disease), or ALS
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Amyotrophic Lateral Sclerosis (Lou Gehrig's disease) or ALS is a degenerative neurodegenerative disease which affects motor neurons in both the brain and spinal cord. After a person is diagnosed with ALS, a very hard time for both the patient and their family starts. As a rule, the disease is tracked down in the second or third year after the first symptoms appear, and that is the time when the disease is very active in a person’s body, and the patient’s state deteriorates really quickly. As the disease progresses, there comes almost complete muscle atrophy which, in turn, leads to almost complete paralysis. At the same time, sanity is not affected, nor does the disease affect the cardiac muscle. The hardest part of the disease is that ALS leads to growing respiratory depression due to the fact that diaphragm muscles suffer most. The patients starts suffering from shortness of breath (dyspnea) and eventually, without special breathing help, moves to intolerable suffocation that may last weeks or, at times, months on end. Modern medicine still doesn’t know either the reasons for the disease or the right ways of treating it. In its evil way, it suddenly attacks a person and then slowly but surely, day by day, deprives them of any chance to move, swallow, or breathe.

The support Centre for those with ALS in Moscow is based at Central Clinical Hospital of Medical Help named after St Bishop Alexiy and provides multidisciplinary help for those with ALS and their relatives, both medical and social. Patients from Moscow have a good chance to be personally supervised at their homes, as each family gets a nurse and a curator. Those who live in different regions can get distant counselling or come to Moscow to see a specialist in person.

The ALS Service ways of help:

· Clinic visits. On one particular day at one particular time those with ALS and their relatives can be helped by different specialists: a neurologist, breathing support specialist, palliative doctor, caregiver, physiotherapist, as well as, possibly, a psychologist and a priest.

· Out-patient reception by doctors of the Service. If need be, there’s a good chance to get counselling by a particular doctor in order to discuss certain symptoms of the disease and find out how to cope with them, get valid recommendations. · Distribution of artificial lungs ventilation apparatus (ALV) for temporary free-of-charge use. As far from many families can afford the costly apparatus, our Support Centre for those with ALS distributes such machines for temporary use completely free-of-charge. The machines include artificial lungs ventilation (ALV) ones and many other kinds of respiratory support devices when they are prescribed by the doctor and are available.

· Help in adjusting ALV apparatus. Such machines are adjusted to a particular patient and require regular check and re-adjustments. Our specialists can help do that.

· Help in hospitalization. Our ALS Service coordinators help run regular scheduled hospitalizations in order to conduct airway diversion gastrostomy or accept patients into palliative wards so as to let ALS patients’ relatives who take regular daily care of them have a bit of rest.

· Family budgeting. After a person has been diagnosed with ALS, their relatives, as a rule, are not aware of the amount of money and effort needed from them at every new stage of the disease. A resource conference is a meeting at which specialists from the Service answer all the questions and, together with families, plan concrete help.

· Counselling in social support and paperwork. Our specialist in social affairs consults about a number of cases, i.e. how to issue a disability, what to do in order to get free-of-charge available medical equipment (e.g. wheelchairs, walkers, etc), where to go in order to have a ramp installed at the entrance of their building, and the like.

· Cover services. Our ALS Service has caregivers who can replace relatives who take care of ALS patients for a short while, i.e. for half or whole day, so that they had a chance to relax a bit or solve their own problems.

· Counselling with a psychologist. Both the patient and their relatives need psychological help as they all go through a very tough time. At our ALS Service such members of families and those who take care of patients have a good chance to get such counselling. On top of that, specialists of our Service constantly run support groups for such relatives.

· Priest’s help. Our Orthodox priests know the peculiarities of the disease and are ready to support ALS patients and their relatives both via the phone and in person. Such priests may visit those who can’t possibly go to church thus helping them at their homes (provided it’s in Moscow or nearby).

· Distribution of equipment and means of rehabilitation. The ALS Service is equipped with special means of communication for those with ALS (I-trackers, phrase books, tables for communication, etc). Besides, our benefactors regularly donate hygiene and rehabilitation items to the Service, which, in turn, passes them on to those in need.

· Medical food. Those with ALS need special feeding which helps sustain the work of their atrophied muscles. Various companies that manufacture such food, as well as private benefactors, regularly donate it for ALS patients via our Service. The products are passed on to the patients the moment they are given to the Service.

· Trainings for relatives. The ALS Service runs classes for those who look after patients with ALS at the School of caregivers and School of Feeding and Means of Communication.