Hell yes! My husband, too.

My doctors were very empathetic and as kind as could be–but they are ALS specialists. Then again, it took almost two years from the time I first had symptoms to get diagnosed, so I was well-prepared for the final verdict. They had a rep from ALSA there to talk to us after the exam to let me know what services were available, and the admin for… Read more

I use the same resources as Jonathan, above. I’m not so much interested in having my voice digitized as preserving phrases in my voice for the future–while I’m still here and when I’m gone. Yes, it’s true you can just record yourself, but the professional communication therapists I work with have lots of advice, suggestions, and tools… Read more

I would like to have treatments like these, but the massage table is too high for me to get onto it. (I can walk but one arm has no strength and I am too weak to lift myself up.) Do you get sitting massages? Anyone have the massage therapist come to you? Same about acupuncture.

Thanks.

Ramps in general are available where I live in Massachusetts, especially along sidewalks and streets. But, in New England, a lot of buildings are very old and ‘grandfathered,’ so they are exempt from ADA rules. I have had to leave my hairdresser, because he’s on the second floor of a building with no elevator. And one of my favorite boutiques… Read more

Hi Diana,

Mine is a FAWSITT brand. A brand new one, plus a shower wheelchair, was provided to me by Compassionate Care ALS at no charge. I just began using it as the last trip upstairs and my time alone in the shower was very dicey.

We set it up in the kitchen right next to the sink. The showering part went very well–I couldn’t understand… Read more

We received a portable shower for me to use as our only full bath is upstairs, and it was going to cost $40,000 to put in an ADA bath downstairs. We haven’t used it yet–I can still get upstairs for now–but I’d like to know if anyone on the forum has used one, and if they have any advice for showering, keeping water from getting… Read more

Check with your local ALSA chapter–they should have lots of suggestions. In Mass., our chapter works with a ramp company that gives pALS 50% off. We were able to make up the rest through local ALS grants, leaving us with a bill of $195 (on a $7,000 ramp). A cousin graciously sent us a check for $195 for the balance, though we could have paid… Read more

Thanks for the feedback! They want me to use it every morning and every night. So far, I’m not having any trouble breathing, coughing, or clearing my throat.

Hi,

Has anyone been using a breathing assist machine–not a cpap or bipap–but one that forces air into your lungs and then sucks it out? I have one, but I’m loathe to use it as I find it frightening. (I have a cpap and no problems with that). Could use some encouragement from others who use one–tips, suggestions, testimonials. Thanks.

Covid has required me to work from home full time, which is great because I don’t have to commute and get to keep working. But I now realize how much more active I was at the office–walking to and from the car, to the conference room, the lunch room, etc. Now I’m more sedentary than ever, and that’s not good! So I walk up and down my… Read more

Here in Massachusetts they just closed all the schools, restaurants are take-out only, and no public gatherings over 25 people. My company now has an everyone works from home policy. My dog is thrilled! My birthday is next weekend and I’m debating about whether my kids should come over–they’re 23 and 27 and work with the public. But I feel… Read more

I agree, Cyndi! I am in a similar situation, but fortunately can work from home. I do enjoy going into the office, though, as it helps my mental health (I work from home 2 days a week). When I have to go to full time at home, I will need my fam and friends to get me out of the house so I don’t get depressed.

Thanks Nancy and Diana–very helpful! I will look into both the Volaris and the Hugo.

I have a rocking knife that allows me to cut meat by myself (I’m one-handed). My commode keeps me from being ‘stranded’ in the bathroom a my lift chair (recliner) allows me to stand up independently. Another thing I love are my OXO pop-top canisters so I can access flour, sugar, etc. with one hand–that allows me to keep baking!

All the comments here are very helpful! I’m traveling to Flagstaff, AZ, next week and in May we’re going to Greece.

A couple of questions for others who have traveled: 1. Altitude. Any suggestions for dealing with it (especially with ALS)? I’ve been told to drink lots of water and build in rests, but I’m still worried (I live near sea level).… Read more

I still work, and I’m interested in hearing from other pALS on this topic. I commute 150 miles round trip three days a week, work from home two days. I’m a writer/editor, I can walk with a cane, have full use of my right hand, and my speech is pretty clear (diagnosed 8/19 but have had symptoms 2.5 years). I’m lucky! Will be getting voice to… Read more