Living with multiple sclerosis

Multiple Sclerosis: Occupation

Many MS patients can continue to work productively and without disabilities for years, despite discomfort. If the boss and employees are openly dealing with the condition, there are many ways to adapt the work to the changed situation. However, multiple sclerosis can also reduce exercise capacity to such an extent that patients can only partially or not exercise their original job. In addition to physical disability, constant fatigue and difficulty concentrating are very common reasons why MS patients have to retire prematurely from work.

Respond or conceal?

For many, the question arises as to whether the supervisor should even learn about the diagnosis MS. A blanket answer does not exist here. The climate in the workplace and the individual disease course play an important role.

In an understanding working environment, it can bring significant benefits to MS patients when they speak openly about their condition. The workload and the workplace can be tailored to individual needs. Even colleagues can adapt to the changed work situation.

Openness can have negative consequences if the working climate is less favorable – from the exclusion of the person affected to the termination. In mild cases with rare MS relapses, it may be better to keep silent about the disease. There is no general obligation to disclose – provided that further work endangers neither the patient nor others.

Enlightenment creates clarity

If the MS patient has decided to openly deal with his illness, education is required. Many people are unaware that the disease is individually very different and does not necessarily end in a wheelchair. Informing colleagues and employers about their personal situation can avoid half-truths and false information. That creates understanding. In addition, only a well-informed environment can really support those affected.

Multiple sclerosis: limitations in the job

The most common problems of MS patients in working life include fatigue and cognitive problems such as poor concentration. There is also a risk of visual disturbances or a lack of muscle control when operating machines or behind the steering wheel. A doctor then has to decide if the patient can still do the job under these circumstances. If driving is no longer possible, even the way to work becomes a problem for many.

In addition to episodes of illness, therapies and cures can also cause long-term workouts for MS patients.

Multiple sclerosis: adjustments in the workplace

Despite possible limitations, MS patients should not quickly abandon their profession. In consultation with the employer, for example, part-time work, additional breaks or a new field of work can be arranged. Some patients also benefit from a lower room temperature. Access ramps for wheelchairs and an office in the vicinity of toilets can also be advantageous in individual cases. If no normal work is possible on site, home work can be an alternative – especially as it eliminates the need to travel to work.

Financial losses

Part-time work and incapacity to work mean significant financial losses for many patients. Under certain conditions, the Federal Employment Agency grants subsidies. The money is not necessarily linked to a severely disabled person’s card.

termination

The diagnosis “MS” is not a sufficient reason for a discharge, because the disease does not necessarily lead to a general incapacity for work. If the employee concerned does not consent to a medical examination, the employer may, in the event of a termination, rely on the medical prognosis or use the previous absence from work. If there is a severe disability (degree of disability at least 50), there is a special dismissal protection. This means, among other things, that a termination can only be made with the consent of the Integration Office.

canditature

If MS patients go on a job search after a termination, the question arises again: should the illness be disclosed or not? Of course, companies have a legitimate interest in learning about the chronic suffering of their employees.

On the other hand, general health issues are not allowed in application procedures – so it may be a lie. However, in certain cases, the candidate is required to be open. If he can not afford the new job in full, he must state this – otherwise the repeal of the contract in court threatens. The same applies to a confirmed severe disability and if the date for starting work can not be kept due to illness.

Good jobs, bad jobs

The German Multiple Sclerosis Society (DMSG) gives tips on which occupations are suitable for people with MS and which ones are less. Volunteering (for example in a self-help group) or artistic professions are practically no problem. Jobs with a high stress factor and night or double shifts are considered less suitable. Even dealing with vehicles and large machines is not always possible.

Another special case is the verbeamtung. The requirement for a lifetime appointment is a “dual service” certified by the medical officer (now and with a high probability until reaching retirement age) – and this is usually not available to MS patients. The situation is different for applicants with severe disabilities: At least for a period of five to ten years, a job is possible in principle.

In any case, MS patients should consult with a (specialist) doctor before choosing a new job. With a written medical assessment, sufferers can also better represent their (existing) skills in the application process.

Multiple sclerosis: travel

People with multiple sclerosis (MS) do not have to do without traveling. But it is important that the journey does not bring more stress than rest. Because some things are more exhausting with MS than expected in advance. This is true for several hours of language course per day or extended city tours.

Protection against relapses

People with MS should think carefully about the destination and prepare the trip carefully. Extreme climatic conditions and physical stress should be avoided.

Climate: On stressful hiking or climbing tours, travel to tropical areas or in the midsummer southern Europe MS patients should do without. A sultry, hot climate can increase the typical symptoms of multiple sclerosis (such as tiredness and fatigue). In addition, heat and physical exertion may trigger a boost. MS patients should therefore cool down regularly, especially in the hot midday hours in the shade and avoid overexertion.

vaccinations: In some cases, vaccinations may be needed before traveling. In general, it is possible in MS vaccinations with dead vaccines (contain killed pathogens) or toxoids (contain only the toxins of the pathogens, but no pathogens themselves). These include vaccinations against tetanus, diphtheria, influenza, hepatitis A and B, meningococci and rabies.

Since vaccination recommendations can change rapidly, travel-loving MS patients should seek timely advice from a vaccine doctor or vaccination center.

In general, vaccinations are important to prevent certain diseases – not just on vacation. Patients with MS should have them regularly refreshed as well as healthy people. When this is the best time (in terms of any relapses and administered immunosuppressants), patients will contact their doctor.

infections: A push can also be triggered by infections such as a flu infection (cold). When traveling, you can catch cold quickly, such as in air-conditioned rooms or when you are surprised by a downpour. Rain protection and warm clothes are therefore included in the luggage.

Treatment of a push

Traveling MS is treated in the same way as it is at home: with high-dose cortisone (cortisone pulse therapy). This thrust therapy can be performed on an outpatient basis by MS patients who have had relapses and are well tolerated by cortisone therapy.

However, if a dose is first treated with high-dose cortisone, most doctors recommend in-patient treatment. The high cortisone doses can (rarely) lead to serious side effects. In addition, most of the physical performance decreases, and many patients feel tired and tired during the treatment.

In most European countries and the US there are enough competent medical professionals who are familiar with the treatment of MS. Only in special cases it makes sense to pack cortisone tablets, for example, if there is no doctor nearby in the holiday country or if the hygienic conditions are poor. Patients should take them after consulting their doctor.

Continue long-term therapy

Long-term therapy (basic therapy) should not be interrupted on holiday. Many MS patients inject the necessary medication themselves. At home it is easy to pay attention to the hygiene required for spraying. On holiday, this can be more difficult, for example at the campsite. Syringes, cannulas, medicines, swabs and disinfectants should be taken from MS patients at home. So that there are no problems (for example at the airport), you should have a certificate issued by the neurologist before you leave, that the medication is urgently needed. The document should best be written in several languages.

Many drug manufacturers offer a prepared customs declaration. This only has to be signed and stamped by the doctor. So you can then take medicines, cannulas and syringes on the plane. In no case should one give up the medicines with the luggage – they could freeze in the hold and thus become ineffective. The immunomodulatory drugs should not be stored too warm or too cold. There are special cool bags, but in the hotel it is also the mini bar or a fridge.

Symptoms under control

Many MS patients are quickly exhausted and tired. It should therefore be consciously scheduled enough breaks in the daily program. High temperatures and physical exertion can increase fatigue or trigger a boost. A refreshing swim in the sea, a shower or a cooling vest provide cooling.

For men with bladder dysfunction, a condom urinal with leg bags is useful on long-haul flights. For women are suitable deposits. On the website www.cbf-da.de (Club Disabled and their friends) MS patients find the brochure “The Locus” with a list of more than 12,000 toilet facilities in Germany and in other European countries. This club also has the Euro-WC key to open more toilets for the disabled throughout Europe.

General travel tips

MS patients with paralysis have a particular risk for one thrombosis, On longer journeys by car, plane or train, regular exercise helps to prevent blood clots. Blood-thinning heparin injections fulfill the same purpose. MS patients should talk to their doctor.

Aboard aircraft There is often low humidity, so you should drink enough – preferably water or other non-alcoholic drinks. Experts recommend 200 milliliters of fluid per hour of flight.

Private wheelchairs are abandoned with the other pieces of luggage. The airline provides the passenger with a wheelchair. Train travelers can call the telephone number 0180 6 512 512 Mobility service of the railway call and register your ride. The employees help on the spot when entering, getting in and out.

diarrhea is a common travel sickness. The affected person loses a lot of water, the medication may not be well received. To avoid diarrhea, the World Health Organization (WHO) Council helps: “Cook it, boil it, peel it or forget it.” (“Cook it, bake it, peel it or forget it”). Everything that was not cooked or peeled by hand should not be consumed in unhygienic conditions. Also on fresh salad and tap water it is better to do without. If “Montezuma’s Revenge” has struck, an electrolyte solution with sugar, salt and water or a ready-to-use solution will help.

Bloody diarrhea may require an antibiotic. MS patients should inform the doctor before they travel and may be prescribed a suitable preparation. The doctor explains in which cases how to use it.

Multiple sclerosis: sports

For a long time, MS patients were advised against sports and physical activity. Today, however, it is known that exercise and training have no negative effects on MS, but can even positively influence typical side effects of the condition, such as reduced mobility, weaknesses in strength, endurance and breathing, and depression.

However, some MS patients do not like doing sports because they then suffer more from emotional disorders. An investigation shows, however, that these emotional disorders normalize in most patients within about 30 minutes.

Strength and endurance training

Before MS patients tie their sports shoes, they should have a sports doctor examine them. He advises them which sport (strength and / or endurance training) in which training intensity in the individual case is best. In addition to personal preferences or dislikes against certain sports play in the creation of the sports program, especially any restrictions (such as paralysis) and the individual ability to perform a role. Some patients feel so good that they go jogging, cycling or skiing. Others prefer less strenuous sports such as walking or walking.

Proper measure

People with multiple sclerosis should not expect too much and always keep their own performance limits in mind. This prevents the sport doing more harm than good.

High-performance sport leads to an extreme mental and physical stress and can possibly worsen the complaints clearly. Due to physical stress (especially at high temperatures and high humidity), the body temperature can rise significantly. In some MS patients, the symptoms are aggravated by heat. It is important to cool off in time or to be active in the evening only in the evening.

Multiple sclerosis: pregnancy

Until the 1950s, doctors advised women with multiple sclerosis (MS) from pregnancy – for fear that it could worsen the disease. Meanwhile, it is known that pregnancy has little negative impact on the disease and the symptoms. It may even have a favorable effect on the course of the disease: the relapse rate decreases continuously during pregnancy (by up to 80 percent in the last third).

In the first months after birth, on the other hand, the relapse rate increases. Later, the frequency of recurrence usually returns to the pre-pregnancy level. Overall, the long-term course of MS does not appear to change as a result of pregnancy.

MS: No danger to the unborn child

Pregnancy and childbirth do not appear to be significantly affected by multiple sclerosis. There is no evidence of increased malformation rate or other changes in the child (such as reduced birth weight). However, if multiple sclerosis has led to persistent symptoms such as paraplegia before pregnancy, they may well affect pregnancy and childbirth.

Medicines during pregnancy

Some MS medicines can harm the unborn baby and therefore should not be taken during pregnancy or only be taken under restricted conditions. The following list gives an overview:

• Interferons: They may be used after a risk-benefit consideration by the treating physician during pregnancy. Usually, however, they are discontinued as soon as women express the desire to have children or a pregnancy is detected.
• Glatiramer acetate (GLAT): GLAT should not be used during pregnancy. However, ongoing therapy is usually stopped only when a pregnancy occurs.
• Natalizumab: The active substance must not be given during pregnancy unless the clinical condition of the woman requires it.
• Fingolimod: Women should not become pregnant during use. If there is still a pregnancy, the drug must be discontinued.
• Mitoxantrone: Experts recommend stopping the medication at least six months before a planned pregnancy. This also applies to male MS patients who wish to have children.
• Azathioprine: The active substance must not be used during pregnancy. Women and men should not father a child for up to six months after taking it.

Birth and lactation

The birth is similar in women with MS as in healthy women. Nothing special has to be considered here. Only women with pronounced sensory disorders or paralysis of the legs should be particularly well observed in late pregnancy. For example, they might not notice the onset of labor.

Whether a mother with MS can breastfeed her baby depends on the individual case. Some women make breastfeeding so much that they prefer to give a vial. Others take immunomodulatory medications that can not be breastfed. In principle, the World Health Organization (WHO) recommends that women with MS should, if possible, breast-feed their child for about four to six months and then start MS treatment again.

MS: inheritance risk

Children of MS suffer from a higher risk of multiple sclerosis than children from healthy parents. However, the risk increase is low: with a probability of 95 percent, children are ill from patients Not also on multiple sclerosis. By the way, the slightly increased risk of illness mainly applies to daughters.