Forum Replies Created
June 9, 2020 at 2:36 pm #15534
I was glad to read that you were considering using a portable shower. I haven’t purchased one yet but I know the time will come when I will have to give up my upstairs bedroom and full bath and move to the main floor which has only a half bath.
I’m interested to know the name of the manufacturer of your portable shower. I did a quick search on YouTube and found showers by Shower Bay and Care Port that looked well constructed, easy to assemble, disassemble and clean.
Has anyone used these brands?
June 2, 2020 at 10:36 am #15479
Your attitude is inspiring, Susan! I do hope you’ll be able to get back to traveling in your camper trailer in the future!
June 2, 2020 at 10:32 am #15478
I completely agree with you, Dagmar. I will continue to be very cautious about where I go, and I’ll make sure to wear a mask and practice social distancing. Some of my friends are venturing out to restaurants but I don’t feel it’s worth taking the risk at this point. Cases are still increasing in many states. I may try to meet up with a friend or two in a local park but we’ll be wearing masks and sitting six feet apart and using our cell phones to be heard if we have to…(-:
May 25, 2020 at 3:33 pm #15420
Dagmar, your Assert Lean-in Show Up words were a welcome reminder to me to do whatever I can to stay connected to others and to a sense of purpose during this protracted period of “social distancing.”
One of my favorites is your Always Learn Something. I find each day goes a little better if I spend a bit of time with an interesting book or watch an online lecture.
My three words are Accept Love Share. Accept myself as I am; show my love and gratitude to friends and family; share whatever strengths I have to try to support others in the challenges they face.
May 12, 2020 at 2:45 pm #15314
I love that photo of you on your adult trike! And what an inspiring and helpful post.
Your advice about “doing all your body will allow” is great, and it’s so true that “fighting back” through exercise, whatever we can manage safely, helps maintain a positive attitude.
Your friendship has been such a wonderful support to me since I joined the Forum. Thank you!
Keep on keeping on, John!
May 9, 2020 at 8:26 am #15291
Thank you so much dear pALS for your kind comments. I am so grateful for this forum and the friendship and support it provides.
April 23, 2020 at 4:55 pm #15165
My ALS Clinic alternates full clinic visits with a one-on-one visit with my neurologist every three months. I was due to see my neurologist on March 20 but all in person visits were canceled, so I scheduled a phone call for April 15. The app my doctor’s office wanted me to download to do Zoom was for Iphone 11 or later. I have an Iphone5 and was unable to download the app.
I can easily do Zoom on my laptop, but was told that the only choices were Iphone or Ipad. To be completely honest, I was relieved not to have to demonstrate my walking which I felt had declined since my last clinic in November. My neurologist asked me some standard questions (which were by no means comprehensive) and then asked me to count to sixty on one breath (which he does at every appointment). He then indicated he was happy to hear my short list of questions about drugs and trials. He told me I was a “perfect candidate for any trial.” Hearing that triggered a burst of hope and gratitude, followed the next day by feelings of guilt that I had not disclosed to him the fact that getting in and out of bed was harder than it used to be, and that I’d had to drop some exercises because I couldn’t do them anymore.
But in that 30 minute phone call, there was only time, it seemed to answer his questions while he typed the answers and to ask for advice about two trials I was interested in. On the whole, despite my feelings that perhaps my doctor might not have gotten a full picture of my physical state, I was very comfortable doing my visit by phone and felt that I did get my questions answered. I had been tempted, frankly, to put off the remote visit but am very glad I went ahead and had the phone call. I like my neurologist very much, and always enjoy talking with him.
April 23, 2020 at 4:04 pm #15164
Last Sunday, I reached out to two of the 54 study locations that are located within 80-90 miles of my home city and was pleased to receive replies from each the very next day. Upon receiving my email with answers to his three questions (1. when did you first notice muscle weakness, 2. what is your SVC of FVC, 3. can you swallow pills and liquids), the clinical research coordinator from one of the sites responded to me again, saying that I sounded like a “great candidate.” He indicated that he will contact me once they are ready to invite patients to screening visits.
I’m grateful to Peter Powell and to Dagmar for their posts on CNM-AU8 which happened to catch my eye. I might not have learned of this platform if not for this forum because I don’t visit clinicaltrials.gov as often as I used to. My four previous attempts to enter trials have failed due to procedural delays and issues with funding which have impacted the research sites. Let’s hope that the start of the Healey Platform trials will not be impacted too severely by Covid-19.
I hope everyone who’s interested can find a study site that is conveniently located.
April 15, 2020 at 9:36 am #15112
I’m looking forward most to being able to being able to take my electric wheelchair to local parks to ride the paved trails. I was a runner and a hiker for many years and always drew strength and inspiration from “forest bathing” before that even became a “trend.” I’ll still take precautions, though, such as wearing a mask, washing my hands and not touching my face.
I’m also looking forward to seeing my friends for lunch regularly again, and to visiting my daughters and their husbands who live in different states.
I anticipate that it will become acceptable not to shake hands and that people will be more careful about covering their faces when they sneeze or cough. I’m wondering if we’ll be more wary of strangers for awhile and less inclined to go to public places where there is close proximity to others such as restaurants, bars, movie theatres, concert halls. On the other hand, once there is an effective vaccine available for widespread use, we will probably return to our original habits.
Let’s hope that the most important change will be a much improved level of pandemic preparedness and coordination and an awareness that this can and will happen again.
April 10, 2020 at 12:27 pm #15083
I’m trying to keep up with the home exercise routines I’ve been practicing for months which include rolling, stretching and some Pilates moves on my bed, air squats a few times a day and walking with my AFOs and rollator inside the house. I also love using my little pedal exerciser while sitting in a comfortable chair. I do thirty minutes of pedaling in ten minute segments each day. Pedaling raises my heart rate and my spirits!
I also do arm exercises with one pound weights and seated heel lifts to try to preserve muscle function in my calves. For the past year, until our YMCA closed four weeks ago, I was working out with the abductor and adductor machines and the leg curl and leg press machines 2-3 times a week. I was using the lowest possible weight settings but felt good that I could do them at all. At home, I try to mimic the abductor/adductor machines by sitting in a chair with a medium size soccer ball between my knees. I press the ball with my knees, holding for five counts, three sets of ten. For the second exercise, I tie a blue elastic exercise band around my legs mid thigh and press outwards against the band, holding for five counts, three sets of ten.
I haven’t figured out how to simulate the leg press/curl, but, for now, I will be happy if I can just somehow maintain my walking ability so that when the Y reopens, I can maybe use the machines, including the recumbent bike and elliptical again.
April 10, 2020 at 9:34 am #15079
I’ve been enjoying phone calls, texts and Facetime with my daughters and with a few friends. I’m trying to reach out to someone every day and I also make it a goal to learn something new every day.
I’m also enjoying some wonderful courses on The Great Courses Plus such as “Experiencing Hubble: Exploring the Milky Way.” In the introduction, the instructor tells us:
“The Milky Way glows with the light of 300 billion stars, dimmed by vast clouds of interstellar gas and stardust. And new stars just keep forming—roughly 1 new star every year! The Milky Way is one among many billions of spiral galaxies in a universe that stretches billions of light-years in every direction. With the Hubble Space Telescope, we can see details in distant spirals that mirror the vast star-making capabilities of our own galaxy. Its spiral structure both stimulates and reflects a galaxy-wide process that has been recycling matter between stars and the interstellar medium for the past 13 billion years.”
Watching the lectures with their awe inspiring photographs provides me with such welcome respite from 24/7 coronavirus news and from my own physical challenges. It’s calming, sometimes, for me to get that wider perspective of our existence in our galaxy, and—the photos could pass for masterpieces of art!
March 28, 2020 at 7:41 pm #14985
How wonderful that you live on eighteen acres and can get out safely on these lovely spring days. I’m glad you and your husband were able to visit your friends—it sounds like you had a great time! Connecting with dear friends and enjoying a bit of humor together seems so vital now.
March 26, 2020 at 5:30 pm #14969
What great tips, Dagmar!
Thanks for the link to the listing of museums offering virtual tours. I’ve started “touring” the Van Gogh Museum. It’s excellent. You can “stand” in the gallery and enjoy each painting in detail, free from the ubiquitous “selfie” takers!
As for reading, I love science and biography. Recently, I finished The Disordered Mind by Eric Kandel, a neuroscientist at Columbia University. It’s a fascinating read, covering what we know about the biological origins/causes of various types of mental disorders as well as new treatments which are being developed. There’s a chapter on Parkinson’s and Huntington’s, and Kandel even touches briefly on ALS, explaining how the misfolding of proteins causes the death of motor neurons.
In case anyone might be thinking, “the world doesn’t need another book on dinosaurs,” I’m here to say you’re wrong! One of my daughters recently gave me The Rise and Fall of the Dinosaurs: a New History of a Lost World. Written in the first person by a paleontologist, it reads like a “who-dun-it” detective story, a real page turner that’s hard to put down.
For art lovers, I recommend Walter Isaacson’s brilliant and highly engaging Leonardo da Vinci. Filled with glossy photographs of Leonardo’s paintings, drawings and invention sketches, the book illuminates da Vinci’s huge accomplishments as well as his failures.
Today, I followed your advice to get outside—for the first time in nearly three weeks! I took my new Air Hawk electric wheel chair out for a spin on my driveway. My husband and I decided to “walk” down the driveway to the mailbox. Then, as he was getting the mail, I felt a sudden urge to “pull out the throttle,” so to speak, and see what she could do! I turned and put the chair in high gear and raced back up the driveway. It felt so good to have such freedom of movement after months of enduring the slow weakening of my legs. (I used to be a runner.) I suppose everyone who “drives” a power chair or a scooter has found it hard to resist that urge to go all out. All of the parks and nature centers in my area are closed now, but I am so looking forward to being able to do some paved trails on my Air Hawk when restrictions have been lifted, and it’s safe to do so.
March 26, 2020 at 4:26 pm #14968
My ALS clinic rotates full clinic visits with one-on-one neurologist visits every three months. I was scheduled to see my neurologist on March 23, but my daughter, Laura, a geriatrics and palliative care physician in New York City, advised me to cancel so I did. She is on the front lines in NYC, seeing patients both at a nursing home and a hospital and is keenly aware aware of how deadly covid 19 can be. She doesn’t want me going out at all.
I then learned from an email sent by the ALS clinic’s social worker two days ago that all ALS clinic visits and support groups have been canceled at the hospital I attend.
March 19, 2020 at 3:11 pm #14893
My husband and I returned from a ten day cruise to our home in Ohio on March 6. We now realize how lucky we were to have made the trip at all and to be symptom free still nearly two weeks later.
These recent news items describe what’s happening in Ohio:
“In the space of two weeks, orders mandated by Gov. Mike DeWine and Ohio Department of Health Director Amy Acton designed to slow the spread of coronavirus have dramatically altered Ohioans’ daily life.
The DeWine administration has banned public gatherings of more than 100, closed K-12 schools for at least three weeks and shut down dine-in service in bars and restaurants. On top of that, colleges have gone to online learning and shut down dormitories and visits to prisons, youth detention centers, jails, psychiatric hospitals and nursing homes have been suspended.
On Wednesday, Ohio Gov. Mike DeWine took another step in trying to contain the COVID-19 coronavirus, ordering the closure of salons, barbershops and tattoo parlors. In addition, DeWine said the current three-week closure of schools in the state likely will be extended, but it’s unclear how long.”
And, the Ohio primary was the only one of four this past Tuesday to be canceled.
Our oldest daughter is a physician working in a hospital and a nursing home in New York City. She has had to attend to patients with Coronavirus and is keenly aware of the risks to people with underlying conditions and the elderly. She has given me strict orders not to go out for any reason, including doctor’s appointments. Although my FVC is still very high and I’ve not noticed any problems with breathing, my daughter told me bluntly that if I were to contract Coronavirus, it could be fatal for me, not only because I have ALS but because the hospital treating me might not have enough ventilators and other equipment. The shortage of equipment for patients (and protective devices for medical personnel such as N95 masks) that exists even at her large and highly regarded hospital in New York City has forced her to face the harsh reality that she and her colleagues won’t be able to prevent patient deaths ad may have to ration care.
I’ve rescheduled my four month visit with my neurologist from March 23 to late April on her advice. My husband does the grocery shopping once or twice a week. He was told by a clerk to try to come early in the morning because by mid-morning many of the shelves are empty. He always takes care to wash his hands thoroughly after coming home and before preparing my food or assisting me with moving around the house.
To Cate: I have trouble washing my hands thoroughly, too. I often just use disinfectant wipes instead.