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Veronika Wuyts replied to the topic Mental Health in the forum A Forum for ALS Caregivers 2 years, 3 months ago
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]
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Veronika Wuyts replied to the topic What vital Question to ask Neuro on Friday?? in the forum Diagnosis Information and General Questions 2 years, 3 months ago
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]
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Veronika Wuyts replied to the topic What to consider after you are diagnosed with ALS in the forum Living With ALS 2 years, 8 months ago
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]
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Veronika Wuyts changed their profile picture 2 years, 8 months ago
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Dagmar Munn and
Veronika Wuyts are now friends 2 years, 8 months ago
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Veronika Wuyts replied to the topic Coming to terms with your diagnosis in the forum Diagnosis Information and General Questions 2 years, 9 months ago
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]
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Veronika Wuyts replied to the topic Rilozole experience? in the forum A Forum for ALS Caregivers 2 years, 10 months ago
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.
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Veronika Wuyts replied to the topic The pandemic continues in the forum Coronavirus (COVID-19) and ALS 2 years, 10 months ago
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.
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Veronika Wuyts posted a new activity comment 2 years, 10 months ago
thanks so much Dagmar, I downloaded your article and will read it first. We went to the doctor yesterday for his second EMG since March. Indeed his arms got worse, rest is stable. She sees us moving more towards FOSMN than to pure ALS, for the moment. The genetic tests for ALS haven’t returned yet. So his porgnosis got a bit better. I didn’t find…[Read more]
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Veronika Wuyts replied to the topic muscle training in the forum Living With ALS 2 years, 10 months ago
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]
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Veronika Wuyts replied to the topic Rilozole experience? in the forum A Forum for ALS Caregivers 2 years, 10 months ago
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]
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Veronika Wuyts posted a new activity comment 2 years, 10 months ago
hello Amanda, thank you for weloming me! wow you have some history there and a fight as well. I wish you all the best! warm regards Veronika
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Veronika Wuyts posted a new activity comment 2 years, 10 months ago
Hello Damgmar, thanks for welcoming me, you are actually the reason I became a member: your positivity and tip on the water bottle exercise drew me in. My husband already exercises this now too, thanks to your instructions! I once hope to be able to chat with you in a zoom or so? all the best! Veronika
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Hello Veronika – – I’m glad my article and tip about the water bottle exercise was helpful! I would be happy to Zoom with you 🙂 Dagmar
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thanks so much Dagmar, I downloaded your article and will read it first. We went to the doctor yesterday for his second EMG since March. Indeed his arms got worse, rest is stable. She sees us moving more towards FOSMN than to pure ALS, for the moment. The genetic tests for ALS haven’t returned yet. So his porgnosis got a bit better. I didn’t find…[Read more]
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Veronika Wuyts became a registered member 2 years, 10 months ago
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Hello Veronika,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or…[Read more]
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Hello Damgmar, thanks for welcoming me, you are actually the reason I became a member: your positivity and tip on the water bottle exercise drew me in. My husband already exercises this now too, thanks to your instructions! I once hope to be able to chat with you in a zoom or so? all the best! Veronika
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Hello Veronika – – I’m glad my article and tip about the water bottle exercise was helpful! I would be happy to Zoom with you 🙂 Dagmar
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thanks so much Dagmar, I downloaded your article and will read it first. We went to the doctor yesterday for his second EMG since March. Indeed his arms got worse, rest is stable. She sees us moving more towards FOSMN than to pure ALS, for the moment. The genetic tests for ALS haven’t returned yet. So his porgnosis got a bit better. I didn’t find…[Read more]
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Veronika, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost my f…[Read more]
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hello Amanda, thank you for weloming me! wow you have some history there and a fight as well. I wish you all the best! warm regards Veronika
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Thank you! I believe that the biomarker research and the research targeting different genetic mutations is heading some place. I hope that we some breakthroughs sooner than later! If you read any articles outside of BioNews that you find interesting, please feel free to share.
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