ALS diagnosis – what now?

Receiving a diagnosis of ALS is harrowing news that everyone deals with differently. What is similar for everyone, however, are the related preparations and decisions. The following topics and processes reflect my personal approach and are primarily intended to be of assistance to people who have just been confronted with the diagnosis.

What does this change mean for me in a rational way?

As soon as one is able to think clearly to some extent, it is worthwhile to make a rough outline. Within a partnership, absolutely together, depending on the emotional situation with the support of a loved one. If you are alone, you should definitely involve someone close to you.

The following questions can be helpful:

  • How long do I want to work if I have a job?

  • Is my apartment / house suitable for wheelchairs, possibly with structural modifications?
  • What is the financial situation, taking into account the new income situation?
  • What kind of support (not financially) from my personal environment can I count on?
  • Is my living situation comfortable for me for the time when I mostly stay at home (bed / wheelchair)?
  • Are there reasons (personal or immediate environment) to move to a nursing home when the need for care increases?
  • What else do I want to do / experience?
  • When do I inform, which environment and how do I inform them?

Legal measures which I recommend to implement promptly or at least to plan as a precaution

   This reflects the situation in Switzerland, for other countries this may be different!

  • General power of attorney (for partner or person of trust) certified by a notary

  • With this, the person I trust can represent my rights in all matters if I am no longer able to sign documents or express myself verbally. This saves me and my immediate environment a lot of unnecessary stress.
  • For all, or at least the important financial products (bank accounts, assets, etc.), the partner - including spouses! – shall be registered as an equal owner. This can prevent short-term financial bottlenecks for the partner after death.
  • With a patient decree you can determine the desired medical measures to support life. The patient decree can be adjusted at any time. As an additional aspect to preserve your own wishes, it also relieves the relatives who otherwise have to make difficult decisions.
  • A testament is useful if you have special wishes outside of the statutory compulsory portions.

Contracts, insurance and other liabilities

   This reflects the situation in Switzerland, for other countries this may be different!

If not already available, it is worthwhile to have an orderly and clear list of all liabilities. This makes it easier for the partner or other supportive person to carry out the necessary measures later.

  • Health insurance

  • Insurance (household effects, motor vehicle insurance, etc.)
  • Memberships (societies etc.)
  • Subscriptions (magazines, programs / apps etc.)
  • Leasing and installment contracts (vehicles, household items, etc.)
  • Promissory notes (debtors, creditors)
  • Cashless means of payment excluding bank and credit cards (cinema cards, department store cards, etc.)
  • Social media (Facebook, Instagram, Twitter etc.)
  • Rental agreements (apartment, parking space, etc.)
  • Usage contracts (landline, internet, mobile phone, TV, electricity, etc.)
  • General contracts (day care center, kindergarten, nursing home, etc.)
  • Cryptocurrencies
  • Mortgages
  • Overview of all passwords, in writing on paper or electronically in a secure form

Rough planning / support and infrastructure

After you have made the layout order to show the current situation, it is advisable to create a rough plan for the next 6-12 months based on this. Ideally, this timetable is recorded on paper, because it helps you and the supporters to stay on course. It makes sense to stick to the rough planning without losing the flexibility to make the necessary adjustments.

  • Which Caregiver organisation do I want to use? An early registration can be an advantage.

  • Who, in my environment, can I imagine as support for: personal hygiene, day care at home, excursions, activities, food input, household support. These people should be addressed early on.
  • Does my financial situation allow private employment of caregivers to relieve my environment and to continue my desired activities, as well as to cover the increasing support.
  • Do I need emotional and spiritual support? In what form can I imagine this support: Pastor, Psychologist (no Psychiatrist), Self-help groups, personal environment, etc.
  • Which conversions are necessary in my living space (shower / toilet, passageways, stairs, doors, lights, blinds etc.) and which aids (nursing bed, special cutlery, dressing aids, communication tools etc.) will I need. These considerations should be approached from a long-term perspective. In order to adequately cover this, it is advisable to consult a specialist for accessible living and/or your national ALS Organisation.
  • Am I also dependent on transport by private car for my mobility? Can my current vehicle be converted for wheelchair transport or do I need a new vehicle that allows for conversion?

Activities and Travel

After receiving the diagnosis of ALS, drastic restrictions in mobility can be expected within 1-3 years in many situations. A related consequence can be travelling accompanied by a caregiver and booking upscale hotels to ensure accessible rooms (especially shower and toilet).

  • What trips do I want to do?

  • Which destinations are not feasible with restricted mobility or which don’t I want to experience with restrictions? These trips should be planned promptly.
  • What financial options do I have? Traveling in a wheelchair is usually more expensive and accompanied by a caregiver you also have to cover their expenses and salary