Veronika Wuyts

for the moment, the most challenging part is when my husband feels depressed and deeply distressed because of how his life is shortend (even if like all of ALS patients, there is no end date known) and all what he will be missing when he doesn’t want to go yet. I feel powerless and would so much try to get the most out of the time we still…[Read more]

I can relate very much to what you feel.

– we always go with two to the apiontment, my husband, the patient, and me, his wife caretaker.

– I note down most of what is said

– we prepare our questions in advance

we are also changing neurologists now because there is no match between the doctor and us. every visit is a source of stress and fear…[Read more]

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…[Read more]

hello, my husband (61) got diagnosed with a MND, probably ALS but not sure yet because atypival symptoms; nevertheless, symptoms are the same: weakening of muscles and losing power in arms, hands and face (variation on ALS is FOSMN facial onset and sensory motor neurone disease). We got the “diagnosis” on april 23, mid corona in Belgium, but knew…[Read more]

after our last visit on Monday we decided to stop the medication all together. 1 pill is nu use according to the doctor. And if his quality of life diminishes already that much now taking it, when the symptoms are still kind of bearable, it is not worth it. every good moment is to be cherished.

here in Belgium Covid is living its second wave. We just continue going to the neurologist and the physio sessions that are held in the hospital. Washing hands regularly and masked we just go for it.

my husband had a daily exercise program from his physiotherapist, thinking he had a viral shoulder problem. it turned out to be a MND. He started physio in the hospital twice a week and stopped the daily exercises, labeled as redundant. When I look back now, it seems that in these 6 weeks the speed of his loss of mussle power in his arms go…[Read more]

we are diagnosed with a motorneurone disease, possibly ALS (new EMG on Monday). My husband started taking it early June, no problems the first weeks, then very tired and stomach upset and no hunger. And we thought depressed as well. So he stopped a couple of days, the depression seemed to go but only 2 or 3 days (he is still much in denial), he is…[Read more]