[Cate]

Hell yes! My husband, too.

[Cate]

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 ALS clinic gave me her direct line and email and sincerely told me to call her anytime whenever I needed anything. (She always responds to me ASAP–often within minutes.) I think it’s really important for doc to be kind and to be prepared with info–especially about support–to give to the patient or family, especially if the patient is not expecting the diagnosis. It’s a lot to take in.

[Cate]

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 recording. Plus they offer services for making communication easier through all kinds of technology, which has helped me with my work. It doesn’t really take much time, and my friends and family are grateful that I will be able to communicate in my own voice (I’m talking about the recordings, not the synthesizer). I have recorded phrases, songs, and endearments to my family, and commands and endearments for my dog (animals tend not to respond to a synthesized voice). I’m still talking normally and I’m glad I decided to bank my voice now, before it goes or changes. My response is also, Why would you not take advantage of this opportunity? But, to each their own. We all are different and all have different needs and priorities. However, I’ll say that once your voice is gone, it’s gone. So if you think you’d like to bank your voice, don’t wait.

[Cate]

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.

[Cate]

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 a three-step entrance that I can no longer use, so I can’t go there (fortunately I can still shop there online, but I miss browsing the shop). The issue for building owners is that if they make one accommodation to the building–such as a ramp–they have to bring the entire building into compliance, which can be expensive.

[Cate]

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 this week 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 the water wouldn’t get everywhere, but it was all contained. From set-up to take-down was about an hour. My husband thinks it will get easier and faster as we get more used to it.

[Cate]

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. Check with Compassionate Care ALS (if they have that in MD), too.

In Massachusetts, the state offers a home improvement loan program for making ADA-compliant improvements. It’s a very low interest rate, you can borrow up to $40k, and you don’t have to pay back the loan until you sell the house. Perhaps MD has something similar.

Good luck!

[Cate]

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.

[Cate]

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, “dance” while I’m waiting for the microwave or coffee maker (holding on to my rollator), and so on to keep active.

Most of my appointments have been rescheduled, but my speech therapy is going to be done via Zoom, which is great. Otherwise, I’m staying in, washing my hands, and not having guests–including my (grown) children, which is very hard.

[Cate]

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 my birthdays are limited at this point.

Serious question: my left hand is all but useless; right hand functions almost normally. That makes it very difficult to wash my hands thoroughly. Any advice?

[Cate]

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.

[Cate]

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

[Cate]

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!

[Cate]

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. I have a cane I use outside the home. I also have a rollator that I don’t use much yet, but think would be good to use on my trips (and by May I may need it!). Have any of you flown with rollators? Can you carry them on and/or gate check them? Any tips for doing this? We have arranged for a wheelchair to get me through the airports, but I think the rollator would be helpful for sight-seeing. Thanks!

[Cate]

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 text software soon and work is fully supportive. Eventually, I will work full-time from home.

My challenges: knowing how long it is safe to drive (going into the office is good for my mental health); getting easily distracted by my ALS symptoms (including getting tired, weakness of left hand, general worry); determining when I will need to go on disability; what and when to tell co-workers (management and HR know, but peers do not).

Would love to hear experiences of those ‘farther along” than I and happy to answer questions from others.