Beth Rookey
Forum Replies Created
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I bought one on Amazon for $36 and it’s rechargeable, it works well for me! https://a.co/d/75suy1Z
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Hi Dagmar,
I have been using Dasher (https://www.inference.org.uk/dasher/) for 16 years to write anything I need to on my computers. It’s a free software download and there are 2 videos – a demo clip (https://youtu.be/nr3s4613DX8) & an explanation of the software development (https://youtu.be/ie9Se7FneXE). It took me an afternoon to figure out how to use it & I couldn’t write without it!
I also use a HeadMouse Nano (https://www.orin.com/access/headmouse/) for 2 years now. I bought it myself after borrowing one from my ALS clinic. I like it because I don’t have to calibrate anything, I drive up to my desktop computer, the HeadMouse picks up the reflective dot on my glasses & I can use my computer. I also use Point-N-Click (https://www.polital.com/pnc/), another free software download, that allows me to make selections – L/R click, double click, highlight/drag. You can get a button to plug into the HeadMouse to click the selection but that would mean I’d have to have it put in/taken out of my hand, which means I need someone around. The PnC gives me the freedom to get on my computer, without needing help!
These have helped me to continue to use my computer & stay in touch with family & friends! I hope it can help someone else 😊
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Jon “Boog” Sciambi, Chicago Cubs TV announcer & ESPN sports announcer, is a very big ALS champion!
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My first symptom, in May/June ’92, was my balance – I would lean over to pick up my sons toys off the floor & I would lose my balance and fall over! He thought it was great that Mommy was ready to play with him, he was 10 months old. I thought it was an inner ear issue & mentioned it to my ObGyn at my yearly, July, she sent me to a GP. After the exam he to see the neurologist. He left the room saying “It doesn’t appear to be life threatening!” Hah! While waiting for the neuro appt., in September, I started noticing weakness in my legs. MRI’s, EMG’s, blood work to eliminate everything else I was given my 2-5 year life sentence in October ’92.
I was fortunate to be enrolled in a double blind drug trial in July ’93 and was on the low dose of the drug. We were allowed to use it open label for a few more months after the trial ended. I’m grateful I’m still here, 30+ years later!
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When I was diagnosed 30 years ago, there was no voice banking nor did I know that I would live this long!
I would have voice banked my voice so that I could be understood easier. I would have looked into technology to make working on the computer.
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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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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 want to deal with Covid so I trust the science & my neuro!
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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 asked for a second opinion at Univ. of VT & was enrolled in a drug trial.
I was devastated thinking my son would grow up not knowing his Mom! Every year past 2 year Anniversary was celebrated in my heart, I’d say ‘You were wrong Dr., I’m still here!’ 30 years strong LIVING with those 3 letters!
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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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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 had AFO’s (Ankle/Foot Orthotics) made that helped me walk, drive my car. When I didn’t wear them, my Achilles tendons were really contracted; 30yrs. ago I didn’t have the support of the ALS clinic, I didn’t know about PT, etc.I used my AFO’s then was measured, fitted for a wheelchair in 1996. I have been in one ever since. I still wear my AFO’s daily because when I am put in my w/c I tilt myself backwards & push my butt back with my feet on the footpads! I spent many years being able to transfer with a lift or if someone would pick me up, I could support my weight.
I don’t have any experience with a walker, cane but I also know that if you fall you risk the possibility of breaking something on your body – we don’t need that! It’s another loss of independence & we go through the stages of grief & try to carry on!
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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-
You can contact the CT ALSA at [email protected] You can tell them I gave you the info!
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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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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 months old. He’s now 31, a Chef in Chicago (I’m in CT) and we ‘talk’ every day!
I’ll be starting my 31st year LIVING with ALS on October 1st…
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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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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 middle of the page & it will open up the ‘Saved’ phrases. When Echo has a notification, I just find the saved phrase & ‘talk’ to her!
My house is a 50′ ranch, the LR, Kitchen are at the opposite end of my room. I bought a baby monitor, my end is plugged in the wall, my parents have the other piece in the LR, Kitchen. If I need help, I just yell ‘Hey!’ and they’ll come to see what I need. Mom has hearing aides, Dad needs them but if the TV is on, the central built in to the ceiling fan is going – they won’t hear me! I turn my computer speakers up & type into Google Translate that I need them and they hear me, lol!
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An ALS clinic visit tip I do: I visit every 6 months & I have a list of the teams email, I write a group email to the whole team. I tell them what has been happening since my last visit with me, my family & then I write to each department:
- PT – My wheelchair is working well, the Roho cushion is good, no skin issues. My L elbow support is loose, can you look at it please?
- RT – The Trilogy is working well, I’m wearing it for 10h each night. The rep has taken info off of it & sent it to you, what did it show you?
- ST – My HeadMouse is working well still, I can’t believe I’ve used it for 2 years! Dasher is still my way to write. My speech is getting harder to understand, can I discuss what to do next?
- OT –
- SW –
- DT –
I start writing it about 2 weeks before my appt., then send 1 email to all the team members & then go to my appt. When I see each one, I’m not talking very much & the Q’s I asked, PT to tighten the elbow & ST, the team are ready to fix or show me results. It saves me from repeating myself 10+ times during my appt. & my neuro & the team appreciate it because everyone knows what’s going on with me at the same time!
I have a great team at The Hospital for Special Care in New Britain, CT, I’ve been there since 1995 and have been doing this email for about 10 years. It works for me, it may save you some energy too! 🙂
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Yes, I too attend Zoom meetings 2-3 times a month, it’s great to connect with other pALS to see how they’re doing!
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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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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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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 middle of the page & it will open up the ‘Saved’ phrases. When Echo has a notification, I just find the saved phrase & ‘talk’ to her!
My house is a 50′ ranch, the LR, Kitchen are at the opposite end of my room. I bought a baby monitor, my end is plugged in the wall, my parents have the other piece in the LR, Kitchen. If I need help, I just yell ‘Hey!’ and they’ll come to see what I need. Mom has hearing aides, Dad needs them but if the TV is on, the central built in to the ceiling fan is going – they won’t hear me! I turn my computer speakers up & type into Google Translate that I need them and they hear me, lol!