astrid
Forum Replies Created
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Thanks for your help and advice?
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 When i in my wheelchair, some people  are asking  my husband how i am  doing!    Why do the talk about me  when i am sitting next to them? -
I Am a fast progressor and have a lot of difficulty to cope with that. Als is taking everything of me that makes me feel me. First my job than my hobbies no more biking.no more gardening no more cooking, them i have to wear different clothes no more zippers or buttons no more high heels but oversized  Sweaters, no more doing your own make up and  hair because you can use your hands. And than iT thakes being a mum and i cant take care of my children anymore like a reaL mom does andthat hurt a lot. They don t
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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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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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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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Hi Amanda i was a nurse before my ALS diagnoses. Now i had to stop working it was not possible anymore for me. Â Â Â Â Â Â Â Â Â Â Â Â Â Â 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 worker and i no langer are. But if all went to plan all the people with diseases wil get the shot in februari so i have to wait a few weeks.
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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 will do this and hoop that we all one day will benefit from it, somewhere there must be a cure for us all . In the near future iT just have to don.t you think.
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Hi I Â wish we had that choice, in the netherlands we only have Riluzol.
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.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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.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!