Cate

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 the…[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 for…[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 has…[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 how…[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 it.…[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.

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 ramp,…[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 like…[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). 2.…[Read more]