Diana Belland
Forum Replies Created
-
Hello Cate,
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?
-
Your attitude is inspiring, Susan! I do hope you’ll be able to get back to traveling in your camper trailer in the future!
-
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…(-:
-
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.
-
John,
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!
Diana
-
Thank you so much dear pALS for your kind comments. I am so grateful for this forum and the friendship and support it provides.
-
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.
-
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.
-
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.
-
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.
-
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!
-
Hi, Susan,
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.
-
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.
-
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.
-
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.
-
I’d like to add an item to the list I posted previously. I recently purchased a:
Drive Medical Folding Exercise Peddler
- It’s a convenient way to exercise legs and arms on days when you can’t get to the Y or gym or if you don’t want to invest in a full size recumbent stationary bicycle.
- It’s best to place the peddler on a mat or rug because it does have a tendency to slide on a hardwood floor.
- I can sit in my recliner chair and use it while watching TV or working on my laptop.
- You can place it on a table and use it as an arm exerciser.
I chose this peddler because it is made by Drive, is moderately priced and had good reviews on Amazon, but there are many different models available on Amazon, offering a range of choices.
With the spread of Coronavirus, I’ve made the decision not to visit my local Y for a few weeks (where I ride the recumbent bike) so I’m glad that I can use the Drive Peddler at home to help keep my legs moving.
-
Hello, Amanda,
This is a great question!
My husband and I have recently returned from a two week vacation which involved staying at a hotel in Ft. Lauderdale for two nights before embarking on a ten day cruise. I’ll describe the features of our ADA hotel room as well as the ADA stateroom we had on the cruise ship.
Hotel room:
I used a large Hugo Navigator rollator both as a walker and a wheelchair in the room. The room was large enough to move around comfortably with the rollator except for the fact that the space between the two queen beds was two narrow to accommodate the rollator. We succeeded in moving one of the beds an inch or two, but it was still a challenge to position the rollator so that I could easily get into bed.
The toilet was positioned in a nook, partially obscured by a wall, making it impossible for anyone using a wheelchair to transfer. There was one grab on the wall next to the toilet. I needed my husband’s assistance to use the toilet since there was no option of getting a raised seat or toilet frame.
I did not use the roll in shower but noted that the grab bars were not accessible from the pull down seat. However, there was room to transfer to a rollator or wheelchair.
Stateroom:
This room, though small, was well designed for rollator/wheelchair use. There was easy access to shower, toilet and sink with my rollator. I made arrangements with Disability Services weeks in advance to request a raised toilet seat with handles. They provided something even better: a sturdy toilet frame with a toilet seat attached that fit over the actual toilet. Both the lid and the seat of the toilet are lifted and the toilet frame/seat rests snugly against them. I had no trouble lifting and lowering myself using this device and needed no assistance using it. The sink was well designed for use by those who are sitting in a wheelchair or rollator with complete open space under the sink and easy access to water fawcet.
The roll in shower, though small, was well designed for efficient water drainage and controls were within easy reach from the pull down chair. I was able to use my rollator to access the pull down seat, but rising from the seat was a huge challenge. At home, I use a shower chair with handles on each side. I can easily push myself up to a standing position using the arm handles. But pull down shower chairs in hotels lack sturdy arm rests. My husband had to step into the shower area with me, help lift me to a standing position where I could then grab the handles of my rollator.
On the plus side, our room was big enough that I could navigate easily in my rented Jazzy power chair. The sliding glass door leading to the balcony had a cleverly designed built in ramp that allowed me to roll smoothly from room to balcony in my comfy power chair. Both the bathroom entrance and the stateroom entrance were generously wide enough to allow easy access with my power chair and with the rollator.
If anyone has suggestions on how to get up easily from a pull down shower seat, I’d love to hear them!
-
I agree with Dagmar, Andy!
Your website has a great “uncluttered” look and is easy to navigate. Thanks for sharing your personal experiences with some of the drugs/therapies.
-
Dagmar, thank you so much for reminding forum members of your wonderful column, “How to Coach the Coach.”
My husband and I returned two days ago from a ten day cruise which was enjoyable but physically demanding for both of us. My husband is getting over a bad cold, and we are both in “recovery” mode, i.e. exhausted! Misunderstandings have been occurring and feelings, especially on my part, were getting “easily bruised.”
How serendipitous to find that you had just today addressed the issue of how pALS and caregivers can handle stress! I re-read your column and then read portions of it aloud to my husband. He sometimes hears my “instructions” about how to help me with a task as “criticism,” and I tend to assume he will know instinctively what to do which can lead to irritation on both our parts. He loved your “sandwich” idea, and I promised him I would use it!
We both feel immensely better—-many thanks!
-
Hi, Cate,
I agree with the points Nancy has made. We have flown several times with rollators, using a Volaris and a Hugo Navigator for different trips, and have always checked them at the gate. They’ve never been damaged.
I love the Volaris for the same reasons Nancy mentions. It’s also extremely easy to maneuver on almost any kind of terrain. Unfortunately, I didn’t realize that they had sent me a size too short for me until it was too late to exchange it. I still use my Volaris in the house but I take the Hugo, which converts to transfer chair mode, when I travel. The convertible rollator is nice to have when you’re sight seeing and might need a short break from walking.
-
Yes, Kathryn, those are great tips!
I would love to know what type or brand Gel cushion you use.
Some things that have made a difference for me are:
1. Oval 8 plastic finger splints (I wear one on the index fingers of both hands while typing on my laptop).
2. My Hugo rollator which converts to transfer chair mode.
3. My new Air Hawk electric wheelchair.
Confession: I really wanted a four wheeled scooter (cause Dagmar looks so cool on hers), but we don’t have a van, and my husband wanted something lightweight that folds and can be stowed in the trunk of our car. It weighs only 41 pounds without batteries. The batteries can be easily removed before folding and lifting into the trunk.
-
It’s so encouraging to hear from other pALS/caregivers who are still traveling with manual or power wheelchairs!
My husband and I are set to take a cruise beginning February 25, and I find myself wondering some days if it’s a good idea even though we have made all the appropriate disability arrangements with the airlines and the cruise ship. Our first cruise in June, 2019, (three months after diagnosis) went very well, but I’ve had some progression since then (limb weakness) and will need more assistance.
Thanks Elena, SC, and Tomoko for your helpful comments. It’s good to be reminded that we pALS can still enjoy travel, with the right planning and use of resources, even as we find ourselves requiring more assistance. I hope more members will share their travel tips and experiences.
-
Part II:
Websites my husband and I have used for renting mobility devices for cruises (they also rent medical equipment):
https://www.specialneedsatsea.com/
A useful website for wheelchair users who travel:
Portable folding toilet frame and carrying bag:
https://www.1800wheelchair.com/product/fold-easy-toilet-safety-frame-travel-bag/
https://www.1800wheelchair.com/product/fold-easy-portable-toilet-frame/
https://wheelchairtravel.org/air-travel/wheelchair-accessible-lavatories/
A wide range of portable, travel bidets can be found on Amazon. Here are two:
Toto Travel Handy Washlet
Brondell Go Spa Travel Bidet
-
Part I:
Susana, my family and I took a cruise to Alaska in June, 2019. You will have a wonderful experience! I found that all of the ports on the cruise could be enjoyed via standard wheelchair. I saw many people using scooters and small electric wheelchairs as well. The train to Denali National Park has a wheelchair lift and the double decker bubble topped cars have elevators to take you to the ADA restrooms below. Some of the tour buses are not equipped with chair lifts so if you have difficulty with stairs, you’ll need assistance getting on from others or you can choose not to do that excursion.
Since my diagnosis of limb onset ALS nearly a year ago (March 4, 2019), my husband and I have made several trips involving plane travel, train travel, cruise ship travel and car travel. We’ve dealt with a range of services and accommodations, and we’ve learned that ADA accessible doesn’t always mean an ideal set up for someone using a rollator or wheelchair. Make sure to phone the cruise lines well ahead of time and ask for an exact description of the bathroom set up. Ask for a roll in shower and ask where the grab bars are placed around the toilet. The cruise line will send you a form to be submitted about 60 days ahead of the sail date for you to use to indicate what kind of assistive equipment you’ll be bringing with you (rollator, wheelchair, scooter).
Many travelers prefer to rent wheelchairs for travel rather than bring their own to avoid the risk of damage by the airlines. In my second post, I’ll list the rental agencies we have used. The rental agency will deliver your device directly to your stateroom. Princess Cruises provided excellent service for embarking and debarking with wheelchairs at each port.
For our first Princess cruise to Alaska last year, we brought a Volaris rollator (which I used on the ship) and rented a standard wheelchair for excursions. We have a second cruise, also with Princess, planned for Feb. 25, 2020, to the Carribbean. We will bring my Hugo Navigator rollator (which converts to transfer chair mode) for the ship. We have rented an electric wheelchair, a Pride Jazzy 1450, to use for excursions. I also plan to bring a portable toilet frame and a battery operated bidet.
We have flown Delta several times over this past year and were very pleased with its wheelchair and aisle chair service. We’ve learned to arrange well in advance for a wheelchair to take me to the gate and an aisle chair for the plane. Delta has a special row of wider seats with extra leg room for disabled passengers. The aisle chair attendants were very skilled in getting me to my seat and then gently easing me from aisle chair to seat. The major problem with flying for pALS is the scarcity of ADA accessible restrooms. I take the precaution of drinking little during flight and try not to book a flight longer than 3-4 hours. We need to keep the pressure on airlines to add fully accessible restrooms.
We spent nearly a week in New York City over the holidays and found that wheelchair accessible cabs, Ubers and Lifts are abundant. Just know that you and your wheelchair or scooter will be strapped to the floor at the back of the cab and you’ll probably feel every bump and pothole in the road. I used my airplane neck pillow to cushion my lower back.
We’ve made several long car trips this year and found that some, not all, rest stops have family rest rooms. If you’re traveling with a companion, this is ideal. But an accessible toilet stall with only one wall grab bar on one side can be a major challenge for me. I’m looking forward to bringing my portable toilet frame (which folds and has its own carrying case) along for future long road trips.
I’ll include links to helpful websites and products in Part II.