How does multiple sclerosis affect life?
Many people who are diagnosed with MS wonder how the disease will affect their lives and what limitations multiple sclerosis will bring to everyday life. There is no standard answer to this question, however, because the disease causes very different symptoms in different individuals and takes a different course in each person.
Multiple sclerosis at work
Sometimes, however, multiple sclerosis limits physical performance to such an extent that it is only partially possible, or not possible at all, for the person affected to carry out their original profession. In addition to physical disability, abnormal fatigue and impaired concentration are common reasons why people with MS leave their jobs prematurely.
Speak up or keep quiet?
However, if the working atmosphere is not as good, openness may also have negative consequences – such as doubts on the part of the employer and colleagues about one’s own ability to work, exclusion or even open rejection. In the case of a mild course of the disease with no or hardly any impairments or infrequent episodes, it may be better to keep quiet about the disease (for the time being).
And in a job interview?
If this is not the case (i.e., at this point there is nothing to suggest that full work performance cannot be performed), you may deny the question about chronic illnesses.
Clarification creates clarity
Adjustments in the workplace
Despite possible limitations, people with MS should not give up their job too quickly. In consultation with the employer, adjustments can be arranged, for example, a change from full-time to part-time work, additional breaks or a new field of activity.
Dismissal
The diagnosis of “MS” alone is not a sufficient reason for dismissal, because the disease does not necessarily lead to a general inability to work.
MS patients with severe disabilities or equal status who have been employed for more than six months have special protection against dismissal. This means that dismissal is then only possible with the approval of the integration or inclusion office.
Good jobs, bad jobs
Risky are under certain circumstances activities where there is a risk of endangering oneself or others, for example as a pilot or policeman. In general, occupations where you have to rely on your body and/or your ability to react at all times may sooner or later become difficult or impossible due to MS.
In less physically demanding jobs (for example, as a teacher or in an office), MS sufferers often work many years longer. But even here, there is no guarantee that the disease will not cause difficulties at some point – for example, through symptoms such as abnormal exhaustion (fatigue) or concentration problems.
Traveling with multiple sclerosis
Even if you have multiple sclerosis, you don’t have to give up traveling. However, it is important that the trip is not more stressful than relaxing. After all, some things are more strenuous with MS than they might seem beforehand. This applies, for example, to several hours of language training a day or extensive city visits.
Here are some important tips for traveling with multiple sclerosis.
Travel planning
For longer trips, it is advisable to plan breaks so as not to overload your own body. If you want to fly to New Zealand, for example, it’s a good idea to make a two-day stopover along the way – in Singapore or Dubai, depending on the flight route. Or, if you have a planned stopover, don’t book the next connecting flight, but relax for a few hours in an air-conditioned lounge at the airport before boarding another plane.
Medical travel preparation
As a person with MS, it is advisable to have your ability to travel assessed by a doctor beforehand, for example by your neurologist or family doctor. The doctor should then record the ability to travel in a medical report (doctor’s letter) – for submission to the airline, for example. Especially for trips abroad, the doctor’s report should be written in English or the language of the country of travel.
It is best to carry all documents in your hand luggage. Also make copies of them (in paper and/or digital form).
Before traveling abroad, it is important to find out in good time about the applicable regulations on taking medicines with you.
Also discuss with your neurologist whether and when vaccinations are best. In principle, vaccinations are possible in MS disease, with a few exceptions. However, it is advisable to administer them in a stable phase of the disease, not during a relapse and also not during an ongoing therapy with cortisone or immune suppressants (reduced vaccination effect!).
Travel pharmacy
All MS medications, syringes & co. belong in hand luggage when traveling by air – not only because the “big” luggage may get lost en route, but also because it may be exposed to excessive cold and heat in the cargo hold.
Some MS medications need to be kept refrigerated. Refrigerated boxes with cooling elements can be used for transport while traveling. Ask your doctor to advise you on this in more detail.
Other travel tips
Be careful to protect yourself from infections. Infections sometimes trigger an MS flare-up. To prevent a cold, for example, it is helpful to avoid drafts and to dress according to the onion principle. This makes it easier to adapt to the ambient temperature, for example when moving from a warm sunny terrace to an air-conditioned hotel room or restaurant.
If “Montezuma’s revenge” has struck after all, an electrolyte solution with sugar, salt and water, which is available as a ready-made solution with the correct ratio of ingredients, may help. For bloody diarrhea, an antibiotic may be necessary. For people with MS, it is advisable to consult a doctor before traveling to find out how to react correctly to diarrhea during travel and, if necessary, to have a suitable medication prescribed for emergencies.
In addition, in warm and hot climates, it is advisable to counteract a rise in body temperature with light cotton clothing, a cooling vest, head covering, cool drinks and a lukewarm shower. Spend the hot midday hours in the shade and avoid strenuous sightseeing or hiking tours.
Sport in multiple sclerosis
For a long time, doctors advised MS patients against sports and recommended rest instead – for fear that physical exhaustion would negatively influence the course of the disease. The background was probably the fact that an increased body temperature sometimes temporarily intensifies MS symptoms such as spasticity, paralysis, fatigue or visual disturbances.
Why people with MS benefit from exercise
Exercise helps relieve various MS symptoms, such as abnormal fatigue, weakness, coordination problems and muscle spasms. In addition, regular exercise promotes general health by increasing blood flow, toning muscles, strengthening bones, boosting fat burning, and improving endurance, mobility and balance.
Which sport is suitable?
If there are no MS symptoms, people with MS are generally allowed to do any sport they like. Some feel so good that they go jogging, cycling or skiing. Others prefer less strenuous sports such as walking or hiking.
Under certain circumstances, however, it may be advisable to switch to another sport. For example, if you suffer from balance problems, it is better to avoid mountaineering in the future.
Advice or trial and error
A sports therapist will advise and support you with regard to your sporting activities and draw up a sports program for you – individually tailored to your wishes and motivation, your previous sporting experience and any physical limitations.
Practical aspects also influence the design of your own sports program. Are you able to visit sports facilities on your own? Is there a swimming pool within easy reach? Is the tennis court shaded in summer? Is the gym sufficiently air-conditioned? Are there public sanitary facilities along the jogging route in case you suffer from bladder or bowel emptying problems?
Mix of endurance and strength training
According to current knowledge, a balanced mix of endurance and strength training is the best way to improve the quality of life in MS. There are general expert recommendations on how often and for how long endurance or strength training is appropriate:
- Endurance training (e.g. jogging, Nordic walking, cycling): two to three training sessions of 10 to 40 minutes each per week for at least 12 weeks.
In individual cases, however, the attending physician, physiotherapist or sports therapist may give different recommendations for the sports program!
After the first few weeks of such training, you will notice that your endurance and muscle strength improve. Clear effects are usually noticeable after twelve weeks. However, in order to maintain or perhaps even increase these effects, it is important to continue training beyond this time!
The right training intensity
During endurance training in particular, the load can be easily determined using the heart rate, which can be measured with a pulse watch. Or you can estimate the load using the so-called Borg scale. It is also suitable for estimating the load during strength training. The scale is used to indicate the individual’s perceived level of exertion during training with values between six and 20:
|
Borg scale |
|
6 |
|
7 …extremely light |
|
8 |
|
9 …very light |
|
10 |
|
11 …light |
|
12 |
|
13 …a little bit exhausting |
|
14 |
|
15 …exhausting |
|
16 |
|
18 |
|
19 …extremely exhausting |
|
20 |
Optimally, MS sufferers train in such a way that the load is in the middle range of the Borg scale – between 11 and 15 – i.e. they essentially perceive it as “somewhat strenuous”. This personal assessment of the training load is more important than a possibly parallel measured heart rate! This is because people with MS who suffer from abnormal fatigue often tire more quickly than would be inferred from heart rate.
More tips for sports training in MS
- Before each training session, choose an appropriate training intensity (Borg scale) adapted to your current condition.
- Start your exercise program with easy, simple forms of exercise. Then first increase the duration of an activity, then the frequency and only finally the intensity.
- Be aware of your exercise limits and avoid excessive fatigue.
- Wear light and permeable functional clothing for training.
- During the warm season, do not train in the midday heat, but rather in the morning or evening. Wear headgear in the sun.
- Make sure you are always able to cool your body during exercise if needed, such as with cool drinks, a cooling shower, or moving to a cooler environment.
- If you have an acute infection, it is advisable not to exercise.
- During an MS flare, it is recommended that you cut back on activity, at least while you are receiving cortisone. Discuss this with your doctor.
Multiple sclerosis and pregnancy
From a medical standpoint, there is nothing wrong with pregnancy in multiple sclerosis. Sometimes it is even beneficial for women who have MS with relapses – at least temporarily.
Up to 30 percent of pregnant women with MS experience an MS relapse in the three months following delivery. After that, the relapse rate drops back to the previous (untreated) level.
Natural, pregnancy-related changes in the maternal immune system are probably responsible for the decrease in the relapse rate during pregnancy.
Conversely, does MS affect pregnancy?
Multiple sclerosis does not negatively affect the course of pregnancy and does not increase the risk of spontaneous miscarriage. If there is no MS-related limiting disability, there is usually nothing to prevent a normal birth.
By the way: Fertility of women and men is not affected by multiple sclerosis.
MS therapy during pregnancy
For men with MS who want to have a child, timely consultation with their neurologist is also advisable. Sometimes they also have special needs with regard to MS therapy.
Relapse therapy in pregnant women
If a pregnant woman does not respond to cortisone relapse therapy or is not allowed to receive cortisone, an MS relapse may also be treated with immune adsorption.
Read more about relapse therapy using cortisone or immune adsorption here.
Progression therapy (immunotherapy) in pregnant women
The regulations are even stricter for cladribine, for which experts assume, among other things, a mutagenic (genotoxic) effect: It is therefore important for both women and men to use an effective method of contraception during and until at least six months after the last dose of cladribine.
For more detailed information on the various MS immunotherapeutics with regard to childbearing, pregnancy and bearing children, please consult your treating physician.
Childbirth and breastfeeding
Childbirth and the postpartum period are usually normal for women with MS, unless there are serious physical disabilities. If there are, the attending physicians will take this into account from the outset.
When breastfeeding women experience an MS flare-up, it can be treated with high-dose cortisone, as is usually the case. It is not necessary to stop breastfeeding for this. However, it is possible to lower the drug concentration in breast milk by having the nursing mother wait about 4 hours after taking the cortisone before breastfeeding.