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Beth Rookey replied to the topic What’s going right for you this week? in the forum Living With ALS 1 week ago
My only child, Rob, and his gf Emily flew in from Chicago for my 62nd birthday! He’s a chef & made homemade tomato soup then made a pork tenderloin & pears for dinner, everything was SO good! After 30 years of living with ALS, I’m still able to eat 95% of what I want & I enjoy it whenever he cooks! 🥰
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Beth Rookey replied to the topic ALS and Coronovirus in the forum Coronavirus (COVID-19) and ALS 2 months ago
I’ll throw my 2¢ in – I’ve had ALS 30 years & was positive for Covid in January ’21, asymptomatic for the most part. I watched my Dad battle it for 2 months, in the hospital where it was touch and go for a while. When they offered the vaccine, I took it – 2 doses & 2 boosters of Moderna and no side affects or progression of symptoms. I didn’t wa…[Read more]
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Beth Rookey replied to the topic When did you first hear those dreadful three letters…A….L….S ? in the forum ALS Awareness and Advocacy 3 months, 3 weeks ago
I heard those 3 letters in October 1992, we said ‘Ok, how do we treat it?’ The neuro said ‘We don’t, you have 2-5 years, go home and enjoy your (15 month old) son while you can’! We went home & tried to find more info on the dial-up internet, found out it was Lou Gehrig’s Disease – a Yankees baseball player, that stung to this Red Sox fan! I ask…[Read more]
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Beth Rookey replied to the topic Roberta Flack—> "Killing me Softly" with ALS in the forum Living With ALS 4 months, 2 weeks ago
She needs to remember that having ALS does not mean her life is over, you can LIVE with it! It’s a pain in the ass but you can still contribute to life. Yes, you go through the stages of grief every time it takes another thing away from you, but you can get through it.
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Beth Rookey replied to the topic ALS and falls in the forum Mobility Aides, Assistive Technology and Medical Equipment 5 months ago
Hi Kathy,
Sorry you fell, I hope you’re okay! When I was first experiencing symptoms, I too would fall over when trying to pick up my 1yo son’s toys. He thought it was great fun that Mom was on the floor to play with him! After my dx in October 1992, I had 2 more serious falls – one to my face & 1 to the back of my head – stitches & staples. I…[Read more] -
Beth Rookey replied to the topic ALS Support Groups: Pros and Cons in the forum Living With ALS 5 months, 1 week ago
You can contact the CT ALSA at [email protected] You can tell them I gave you the info!
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Beth Rookey replied to the topic ALS Support Groups: Pros and Cons in the forum Living With ALS 5 months, 1 week ago
Hi Amanda,
I’ve been participating in an ALS pALS Zoom chat twice a month in CT for many years. I can’t get to an in-person support groups so these are perfect! They also have support groups for newly dx pALS & they have Caregiver support groups too!
Beth -
Beth Rookey replied to the topic Do you consider yourself a “hero” for living with ALS? How about a “survivor?” in the forum Living With ALS 5 months, 3 weeks ago
I prefer ‘Warrior’ because I fight this disease Every. Single. Day! Sure, some days suck and I allow myself a pity party, pick myself up figuratively and get on with LIVING with ALS. I try to keep a positive attitude but allow myself a pity party 😊
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Beth Rookey replied to the topic Has ALS changed your perception of aging? in the forum Living With ALS 6 months ago
Hi Jean-Pierre,
Fortunately I did not have an of those side affects, other than feeling like a pin cushion lol!
I have sporadic limb onset ALS so Idk if I was “blessed” with slow progression or if the low dose I was on in the trial and open label, had an affect on it! I believe my son was my will to live, I didn’t want to leave him at 15 mon…[Read more]
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Beth Rookey replied to the topic Has ALS changed your perception of aging? in the forum Living With ALS 6 months ago
Hi… The double blind drug trial I was involved with, in 1993, was for CNTF. They stopped the open label use of it because they were not seeing the efficacy they wanted.
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Beth Rookey replied to the topic Has ALS changed your perception of aging? in the forum Living With ALS 6 months, 1 week ago
Yes, Dagmar! When I was dx at 31yo, I thought my life was over. I was fortunate to get into a drug trial, was again fortunate to get the drug & 30 years later I celebrate every birthday! I’m thrilled to be 61yo and to be as ‘healthy’ as I am! Old, to me having ALS, is something to take pride in achieving.
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Beth Rookey replied to the topic A brand-new sub-forum: Let's discuss mobility, technology and medical equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 7 months ago
Hi, I don’t agree with that. I’ve had my AFO’s for 15+ years & have never had sore spots on my feet! My Achilles tendons are very short, I could be en pointe if I were a ballet dancer. Mine were molded at Hangar & I haven’t had any problems. Good luck!
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Beth Rookey replied to the topic What A.I. (artificial intelligence) home devices help you live with ALS? in the forum Living With ALS 7 months, 1 week ago
I have an Echo in my room, hooked to my Bose radio to amplify the sound, and I cannot speak to it. I open a tab on Chrome, open Google Translate, type in what I want and hit the ‘Listen’ speaker icon. If it’s a phrase I’ll use again (Echo… Read notifications), I hit the star icon on the right side & it saves it; click on the star icon in the middl…[Read more]
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Beth Rookey replied to the topic What A.I. (artificial intelligence) home devices help you live with ALS? in the forum Living With ALS 7 months, 1 week ago
I have an Echo in my room, hooked to my Bose radio to amplify the sound, and I cannot speak to it. I open a tab on Chrome, open Google Translate, type in what I want and hit the ‘Listen’ speaker icon. If it’s a phrase I’ll use again (Echo… Read notifications), I hit the star icon on the right side & it saves it; click on the star icon in the m…[Read more]
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Beth Rookey changed their profile picture 7 months, 1 week ago
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Beth Rookey became a registered member 7 months, 1 week ago
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Hello Beth,Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!
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 h…[Read more]
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Hello Anne,
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
On a personal note, in reading your profile/bio, we are so blessed to have you join us and be able to learn from and be inspired by your longevity and positive attitude!
If there is anything specific you would like to see…[Read more]
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