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What to consider after you are diagnosed with ALS
After the initial shock of hearing a diagnoses such as ALS, there are many things for a pALS and their loved ones to consider. Although living a longer life is now more common with ALS, we all will eventually pass on. Now, if you haven’t already done so, may be a good time to:
Review your healthcare plan and your wishes for medical care. Do you want Hospice? Are there specific things you do or don’t want such as feeding tubes, breathing assistance, etc. Have you signed a do-not-resuscitate order or advance directives?
Have you planned for your financial affairs? Do you have a loved one who is knowledgeable about where to find important papers and what your wishes are? Is your will revised and up to date? Do you have life insurance and is the information current?
Have you consider final preparations such as:
Do you want to write letters or make videos for your loved ones? Are there special items that you wish to give to special people?
Have you planned for your service including burial plot or cremation? Do you a minister, priest or other spiritual advisor?
At what point do you/did you make these decisions? What kind of support or help do/did you need?
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we have had a first diagnosis end of april, and a confirmation of ALS on september 4th. playtime for denial is now over. so time for things like
– finances: advice from the bank, need to add a personal account, now we have everything in our name which will be blocked by law the day he dies untill the notary gives it free again.
– group insurances: needed to change a group insurance that was only for “life” and not for “death” before the pension age, turned out very well after the right advice from a helpfull emlpoyee at a governement office and some weeks waiting, was very stressful when I found out though in the beginning.
– marriage contract needed to be updated because would have negative consequences and were helped by the notary.
– care contract: made up by the notary so I can be his guardian in case he can not act any more for signatures and money decisions
– we agree on euthanasia (which is possible in Belgium thank God for that) but is now too early to fill in the papers yet, but I do have the address and links what to do and our GP agreed to be 1 of the 2 doctors necessary.
– hospital insurance from his employer: got accepted as a patient in 1 out of 28 grave ilnesses that gives us the right to have also his ambulant care refunded (the part that is not paid by the health insurance) we seem to have the “Rolls Royce” of the market DKV.
– health insurance: God bless Belgium for our fantastic health system. doctors, MRI, CT’s, NMRC, ergo, fysio, logo are all paid for more than 80%. ex. Rilutek is €155 without insurance, €12 with. Was on special demand though, because expensive and special medication.
– invalidity agency: because this is a fast progressing illness we can be allowed a budget of 65k per year for his care “fast” (not waiting 3 years…if it ever comes, budget cuts…) by the governement. That demand is now in process and needs much time, that is why we started right away with it, now that we don’t need it yet.
– driving: we send in a demand for a checkup for his driving-skills to see what is still allowed or needs to change in the car (his legs are not affected (yet) only his arms and hands get weaker, and his face)
that is about what we started now. the health part on his wishes on resucitation etc, we haven’t done yet…but we are still at the beginning of our conscious journey with ALS
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