Living with MS: My Home is My Castle
In some forms, MS is accompanied by physical limitations. Even if only some MS patients develop walking difficulties, those affected often ask themselves the question after a diagnosis: Can I continue to live in my own home permanently? Barrier-free living is important in order to remain self-determined and independent for as long as possible if the disease is accompanied by significant physical limitations despite treatment. We give tips on what those affected should pay attention to and what options they have for adapting their home to their individual needs. And even if more support is needed, there are sensible options.
Moving or remodeling? Early planning makes sense.
Rethink your current living situation early and proceed in a planned manner
In order to be able to continue living as independently as possible despite an MS diagnosis with an unfavorable course, the living space should be adapted to one's own needs. Those affected should therefore actively ask themselves the question: What will their own situation look like in a few years, even if the course of the disease is unfavorable? Apartments on upper floors without an elevator can become a burden under certain circumstances. Is there enough space to be able to use any walking aids that may be necessary? Do bathtubs or shower cubicles have a high entrance that carries the risk of slipping? These things are rather obvious, but the well-being of MS patients also depends on rather inconspicuous factors. For example: apartments that heat up a lot in summer can become uncomfortable due to the Uhthoff phenomenon . If these or similar conditions exist, a well-planned move or renovation should be considered in the long term so that this does not suddenly have to be done under unfavorable conditions. If the apartment does not have any insurmountable obstacles, nothing stands in the way of remaining in one's own four walls.
Cables, doorsteps, carpets: remove tripping hazards
The most common symptoms of MS include visual and gait problems. Barrier-free living therefore means ensuring freedom of movement, creating space and removing tripping hazards. Door thresholds or high carpet edges can easily become obstacles. Threshold ramps can help here. Exposed cables should also be removed or covered. For very smooth floors, a non-slip covering may be recommended.
Non-slip surface and handrails: securing the bathroom
Particular attention is paid to the design of the bathroom. Tiles should be covered with a non-slip floor covering. Non-slip mats also make getting in and out of the bathtub and shower easier. Ideally, the shower should be at ground level. This makes it much safer to enter. If there is enough space, a shower chair can also prove helpful. Grab bars on the walls provide additional safety. If drill holes are to be avoided or flexible solutions are required, mobile grab bars can be a sensible alternative. These can be attached to most smooth surfaces with a vacuum seal. Enough space for a stool in front of the sink can help make “cat washing” easier on bad days. And if the sink is to be used while sitting, a tilting mirror is a good idea.
In the bathroom, grab bars and seats can make life easier for MS patients.
Adapt rooms and furniture to your needs
There are also a few options for furniture that can make everyday life easier. Seats that are too low make getting up unnecessarily difficult. For this reason, the bed should also be high enough. A height-adjustable slatted frame provides additional comfort. Free-standing chests of drawers or shelves should be fixed if possible so that they can also be used as a support if you are unsteady when walking. Cupboards with pull-out compartments are easier to handle and clearer. If there is enough space, a seat in the wardrobe makes it easier to put on shoes. To prevent the apartment from heating up in the summer months, effective black-out options should be available. If there are no roller shutters, thermal curtains can prove useful. At least one room in the apartment should be a cool retreat to avoid additional stress from the Uhthoff phenomenon. And even if we all naturally want to limit energy consumption for environmental reasons: a (mobile) air conditioning system can be a sensible investment, especially for the very warm days of the year.
Who should pay for it? Nursing insurance, medical prescriptions and loans
Before remodeling your own home, it is advisable to get detailed advice on which subsidies are available. Depending on the level of care required, nursing care funds pay up to 4,000 euros for so-called living environment improvement measures. This means, for example, the installation of a new shower or stair lift, widening doors or remodeling furniture. The subsidy for barrier-free living can only be applied for once - specifically before the start of the renovation or purchase - after which further measures are only possible when the person is classified in a higher level of care. Anyone who needs more financing can apply for a low-interest loan of up to 50,000 euros from KFW. The corresponding program is called "Altersgerecht Umbauen (159)", but is also available for people with a restrictive illness. Everyday aids, such as grab handles, can also be obtained from medical supply stores with a doctor's prescription. The treating doctors and the health insurance company should therefore be involved in the planning at an early stage.
Ideally, the apartment is suitable for the use of a wheelchair (example photo with photo model).
Living alone is difficult? There are alternatives
Many people are put off by the prospect of having to live in a nursing home. First of all, there are numerous excellent facilities that are not only professionally run, but also offer a pleasant living situation. Information about the possible facilities can also be requested from the interest groups. But there are also numerous alternatives, especially for people with less severe disabilities. So-called service houses are suitable for people who want to live alone and only occasionally need support with everyday things. Here, household and nursing services can be booked flexibly, but the residents are completely free to arrange the actual living situation. Living together in a MS shared apartment is even more flexible: Here, everyday life can be organized independently and with mutual support.
Conclusion: Check financing options and seek exchange
MS patients have numerous options for adapting their living situation to their own needs. They are supported by prescriptions for everyday aids, by nursing care insurance covering costs and by low-cost loans for renovation work. Specialist associations such as the German Multiple Sclerosis Society or self-help groups also offer extensive advice. There you can also benefit from the experience of other sufferers. This gives you valuable first-hand tips on which everyday aids have proven particularly useful and what other financing options are available.
