@astrid
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Astrid replied to the topic Are you in pain? in the forum Living With ALS 3 months, 1 week ago
I have had a lot of pain due to muscle weakness of my left shoulder. My arm is too heavy for my sholder muscles and because of lack of movement iT became more painfull. I have a good therapist who gives me advice about range of motions. And iT works for me.
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Astrid posted a new activity comment 5 months ago
Hi frank i will also having a lift so i can get to my sleeping and bathroom ! i live in a small house with lots of stairs and levels. Even the entree to the garden has a stair unfortunately that is stil a problem to solve, but maybe if my husband can find a way to get me down the stairs safely we can sit in the garden with our kids this summer.
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Astrid replied to the topic Oh my COVID vaccine in the forum Coronavirus (COVID-19) and ALS 5 months, 2 weeks ago
Hi Amanda i will get my first Covid shot april 14! my family members still do not know when , only my 86 years old dad has been vaccinated and he did not had any site effects.
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Amanda and
Astrid are now friends 5 months, 2 weeks ago
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Astrid replied to the topic Technology and ALS Research in the forum ALS News 5 months, 2 weeks ago
What i dont Understand is why are there no developments for us pAls who have lost the use of a hand or leg, there must be a lot of clever students in the world who can develope some kind of device for us so we can use that hand of leg again? Sort of an exoskelet?.
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Astrid replied to the topic Has your State made the COVID-19 Vaccine available to pALS and caregivers? in the forum Coronavirus (COVID-19) and ALS 8 months, 2 weeks ago
Hi Amanda i was a nurse before my ALS diagnoses. Now i had to stop working it was not possible anymore for me. In the Netherlands the first persons to get the vaccine are all the medical workers and by some mistake they send me an invitation too. I will not accept this vaccine because it is ment to be for a medical wor…[Read more]
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Astrid posted a new activity comment 9 months, 1 week ago
I am going to read your book Dagmar,
Dank je! -
Astrid posted a new activity comment 9 months, 1 week ago
I have the feeling that all of the topics above are importend for me. At the moment i have trouble finding motivation for celebrating Christmas . How do you find new motivation, after been diagnosed ?
I also like to read about research and Clinical trails , i feel iT is importent to know that maybe there is hoop for a treatment in the nearby future?-
Thank you for your suggestions Astrid.
Regarding motivation, have you read my book? It’s about my 1st year with ALS (and it’s free!) Here is the link: https://drive.google.com/file/d/0B_JwTpNMOI1DeGpaQXpnRExNY2s/view
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I am going to read your book Dagmar,
Dank je!
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Astrid replied to the topic Getting involved in clinical trials in the forum Living With ALS 10 months, 1 week ago
I was asked bij tricals, they contactend me by email if i was willing to participeer in this trail, i just have had a long day of tests and i wil get the results this week.(foregive me my English i Am Dutch) i feel iT is importent to help if we can, we need to find a cure for us all as soon as possible time is not our friend anymore. So i wi…[Read more]
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Astrid replied to the topic Radicava – Home Infusion vs Infusion Center? in the forum Living With ALS 10 months, 2 weeks ago
Hi I wish we had that choice, in the netherlands we only have Riluzol.
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Astrid replied to the topic ALS Awareness Month Spotlight: Susan Gray in the forum ALS Awareness Month 11 months ago
.Hi Susan I had and still have difficulties by accepting the ALS
diagnoses, but you sad something that I will remember, you sad I accept the diagnosis but not the prognoses, I Will keep that in mind. Thank you for that!
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Astrid replied to the topic ALS Awareness Month Spotlight: Susan Gray in the forum ALS Awareness Month 11 months ago
.Hi Susan I had and still have difficulties by accepting the ALS
diagnoses, but you sad something that i will remember, you sad I accept the diagnosis but nog the prognoses, I Will keep that in mind. Thank you for that!
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Astrid posted a new activity comment 11 months ago
Hi Dagmar you are my hope for the future, you let us see how we can live with ALS ,i Am still fyghting to find my wat back to Some soort of life again. At back in live again. At the moment we Will thank you for your positief collums the help us alot thanks!
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Astrid posted a new activity comment 11 months ago
Hi Amanda Nice to meet you and thank you for your kind words.
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Astrid became a registered member 11 months, 1 week ago
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Hello Astrid,
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. You can also search for past topics or…[Read more]
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Hi Dagmar you are my hope for the future, you let us see how we can live with ALS ,i Am still fyghting to find my wat back to Some soort of life again. At back in live again. At the moment we Will thank you for your positief collums the help us alot thanks!
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Hello Astrid, 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 l…[Read more]
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Hi Amanda Nice to meet you and thank you for your kind words.
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Thank you Astrid. Nice to hear from you. We thought about installing a lift system but rejected it for several reasons. We instead are having a commercial elevator installed, which should be completed within the next few weeks. We live across the street from the beach and were required by local ordnance to build our home in 2010 a minimum of eight…[Read more]