Cindy
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My husband John is my caregiver and he goes in with me to every appointment. I do see my mental health professional privately.
two sets of eyes and ears are better than one and it helps when we discuss topics post appointment. -
I am always encouraged to get the flu shot but I seldom do. Prior to my diagnosis I always got the age appropriate health screenings ( mammogram/ colonoscopy, bone density) but I’ve always been reluctant to get vaccines. I really am on the fence this year.
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There is a great movie on Netflix called “ The Fundamentals of Caring”. Stars Paul Rudd.
who is a caregiver For a teen with Duchenne Muscular Dystrophy. -
I’m in The Philadelphia area. Clinic visits are virtual. However I’ve been told that they are working feverishly to open a new clinic space. I’d much rather be seen in person.
I go to an infusion center for Radicava and feel perfectly safe. I’m sure every precaution will be taken at clinic. -
So I take my Riluzole about an hour before lunch and at bedtime. No side effects.
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I was diagnosed in Aug 2017. Symptoms began Oct 2016. I started Radicava in Nov 2017. I am still on it. I believe it has kept my progression slow. I have a port and go to infusion center. I think the outing also helps. Seeing the nurses and seeing other patients helps put everything in perspective. I recommend trying it. As one neurologist told me as I sought other opinions, I’d rather you not have ALS and be on Radicava than have ALS and not be on it.
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I am seen by the Temple clinic team in Philadelphia. Right now appointments are by telemedicine. It definitely takes longer to get an appointment. Temple is an approved site for the platform trial out of Massachusetts and the trial of Centaur. Neither trial has been launched at Temple due to Covid, although all the preliminary contracts and protocols are in place.
quite Frustrating as I finally qualified for the Centaur trial. I am usually excluded From trials due to duration of illness ( I am a slow progressor) or my age (65). Waiting is the name of the game. -
Igor, I am reading your remarks. Please keep posting. Thanks for sharing your knowledge and insight. Cindy
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I was about to have outpatient PT when Covid struck and all was postponed. The PT center is opening up again with restrictions and protocols. However, I am not ready to take any chances quite yet. And so I will wait.
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When I was diagnosed I told my family that Lou Gehrig and I have more in common than our love of baseball. I tried to keep it as light as I could. I’m 3 1/2 years in since symptoms began. Limb onset. Feet and legs. Slow progression. Just beginning in fingers and hands. We moved into a 55 plus community. We did tell our neighbors and knew who to leak the info to so that most everyone knows.
people don’t ask but when they look like they want to know we tell. No walking on eggshells for them or for us.