Beth Rookey

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! 🥰

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]

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]

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.

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]

You can contact the CT ALSA at [email protected] You can tell them I gave you the info!

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

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 😊

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]

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.

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.

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!

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]

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]