MaryConnolly
Forum Replies Created
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What a great idea! I’ve not seen anything like a split seat design. Thank you!
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Here is the video of my husband on an accessible Mt Tamalpais trail in the aforementioned Whill chair. We traversed the first .12 mile of McKennan Gulch Trail which led to a stone bench overlooking Bolinas Lagoon, Marin County. The trail continues on for several miles, but we did not adventure that far as it becomes much steeper. Accessible meant less than 10 degree incline and paved to be wide. A great day spent with a college buddy! I hope the video comes through–if not I can email it if I have your info. Happy trails-Mary
https://drive.google.com/file/d/1xPP6aJfucbQ60-gbWuIdFP_N3TI1AbFC/view?usp=sharing
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My husband uses a Whill mobility chair. The engineering on the front wheels is amazing and allows him to turn on a dime. He can navigate grass, curbs up to 2″, and outdoor trails if they are wide enough and not too bumpy. We took it on a designated accessible outdoor trail close to our home and it navigated the hard packed rocky terrain just fine! It can manage inclines up to 10º which many mobility devices cannot. And it breaks down into 4 pieces so it’s portable. Heaviest part is 42lbs. Highly recommend that you take a test drive at a local dealer. We found a dealer at the Center for Independent Living in Berkeley. It’s not inexpensive and insurance did not cover our purchase. Be sure the check out the Specs tab at the site below.
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Fascinating articles. Although sample size is small it appears that acupuncture does not make the condition worse. Any stabilization and improved QoL seems worth the effort. Thanks for sharing. Will add this to list of questions for next appt with neurologist.
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We continue preventative care via annual physicals, dental, vision and dermatology appts. Some of the bloodwork done during quarterly ALS clinic and clinical trial blood draws overlaps with bloodwork required for annual physicals. We also stay up to date on vaccinations (Covid, shingles, tetanus, whooping cough, etc.) Preventative care helps maintain a better quality of life, in my opinion, even in the face of ALS.
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A rollator is very helpful! Like many of you we have transitioned through a cane, walking sticks, a 3-wheel rollator and a 4-wheel rollator (we have two types). A few months ago we purchased a motorized WHILL chair which I highly recommend for longer treks–it can manage accessible trails and up to a 10degree grade. It also breaks down into 3 primary parts which are easily put together and taken apart. Each of these items has helped to maintain independence and mobility. My pALS is still able to walk, but longer distances can be challenging so a motorized chair was the next logical step to getting out and about. In addition to the fleet of wheeled devices he also has AFOs for both feet, but does not need to wear both all the time. They require more effort to put on. We’ve recently been trying a Neofect velcro wrap-style footdrop brace for a short distance inside the house i.e. to the bathroom or to family room at end of day. It provides support for these short distances and is easier to put on/off than the more rigid AFO. Safety and fall prevention are critically important and one can strike a balance by using multimodal mobility aids. Stay well and keep moving!
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I don’t know how responsive your neurologist or care team is, but they should know about the falls. I hope your neurologist is a member of an ALS excellence care team. We are at UCSF in San Francisco, but I’ve found that our care is only as good as our advocacy. There are intermediate steps before a power chair IMO and we have several mobility devices in play. All are portable at this point in our journey. My husband wears an AFO when out of the house to support his foot that has foot drop. In house he uses a 4-wheel rollator (Nitro Drive for a tall person) and lately he has been using a NeoFect foot drop brace to support his ankle and foot when walking around the house. The Neofect is not as cumbersome as his very lightweight Noodle AFO (yes, that’s what it is called so says the orthotist). We also have a Hoyer lift should I need to do a transfer, but we were advosed to get it to lift him should he fall to the floor. A Hoyer works if you’ve got enough space to maneuver it around a person on the floor–no such luck in a cramped bathroom. We’ve called 911 and asked for a “lift assist” and the firefighter/paramedics show up without sirens and blazing lights, check to make sure there is no injury and then lift to standing and then sitting. Your local first responders are part of the care team and they are happy to help–saving you a potential injury raising a loved one from the floor. Wishing you a calm evening on this very long road. The ALS Forum is a great place to get information as is your local ALS Association chapter, iamals.org, everythingals.org, the Les Turner Foundation, and Team Gleason Foundation. Sending love and light.
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We’ll be getting the next Covid booster next week. Have already received the flu vaccine. Here are two articles that address new Covid vaccines and timing issues related to getting Covid and flu vaccines. Dr. Baker is a good friend and well versed in the science. His credentials speak for themselves.
Stay well.
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There are several ‘power lift’ aids that my husband currently uses to get from sitting to standing in a variety of situations. For walking he uses a 4-wheeled rollator (Drive Nitro, foldable with seat) to assist walking short distances and he has a motorized WHILL chair for longer excursions. He does not use a power wheel chair.
Our current arsenal includes:
1) Power LiftSeat for the toilet: https://liftseat.shop/collections/frontpage/products/liftseat-independence-ii-toilet-lift Raises and lowers to get one off and on the toilet. We purchased a Brondell bidet and added it to this lift. You’ll need a duplex plug ideally located next to your toilet–one for power for the power seat and the other for a bidet. Highly, highly recommend. ~$1500 Bidet ~600 This manufacturer has recently come out with a Liftseat All Purpose Lifting Chair. It is not on their website so you’d need to request info: (877) 665-4381 [email protected] We did not purchase the all purpose seat as we already purchased the Independence Chair by VELA.
2) The Independence Chair by VELA: https://enableme.com/products-3-2/the-original-independence-chair/ This office style chair is invaluable! My husband is at his desk working on the computer everyday and this chair raises and lowers him safely. It has wheels so one can move around the room and it raises to counter height. It also has a brake—what a concept–a wheeled chair with a brake! The brake is a lever which locks all 4 wheels and accessible by reaching slightly back with your hand. We plug it in to charge the battery every few days. ~$4000
3) SitNStand portable lift chair. It’s battery operated and inflatable and raises ~8″ to help one get out of a chair or off a sofa. We just purchased this so my husband can continue to use his favorite chair or get out of a friend’s furniture more easily. We’ve noticed that seat heights are generally low for someone who is 6’2″ and most chairs (residential and restaurant) do not have arms so going from sitting to standing is a challenge. It’s portable so if we went somewhere we could take it with us. There are 4 air chambers in it and each chamber inflates independently so you can inflate it to the height (or deflate it) to what’s good for you. Still need to experiment with the sofa and other furnishings. https://www.sitnstand.com/?gclid=Cj0KCQjwy5maBhDdARIsAMxrkw2VYM-_AQIL2o1d0OiLGKxysam7yRVnKFHspIOA7HIEqtKv8m0JYbwaAh5gEALw_wcB ~$500 There is also a version for a wheelchair, but don’t know if it’s a good match for a power wheelchair.
Lastly, I’d like to put in a plug for the motorized WHILL chair. It does not raise or lower, but if you like to get out and explore this chair can handle certain unpaved surfaces and grades up to 10 degrees. It is portable and breaks down into 4 parts. It now takes me less than 7 min to break it down and reassemble. Ours is model C2. I think this is a great addition for those who have limited walking capability, but still want to get out and about. We found a designated Accessible trail on our favorite mountain and ventured out to see the ocean. We’ve taken it on unpaved trails in a local marsh and it easily handles traversing the grass in the park. Highly recommend. https://whill.inc/us/whill-model-c2/ ~$4,000
None of these were covered by Medicare. Hopefully our voices and the voices of many who live with motor neuron disease and our unified persistent advocacy will bring much needed change.
See https: for MedicareAdvocacy’s most recent campaign: https://medicareadvocacy.org/wheelchair-seat-elevation-systems-should-be-covered-by-medicare/ I believe the ALS Association had a recent campaign as well.
Be well.
Mary
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Here is the website for Team Gleason Assistance: https://teamgleason.org/need-assistance/ The website is very robust and I highly recommend signing up for their newsletter and taking a look around it. Steve Gleason has ALS and is vested in helping pALS and cALS and their families in tangible and meaningful ways.
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Here is the website for Team Gleason Assistance: https://teamgleason.org/need-assistance/ The website is very robust and I highly recommend signing up for their newsletter and taking a look around it. Steve Gleason has ALS and is vested in helping pALS and cALS and their families in tangible and meaningful ways. ❤️❤️❤️
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Hi all! You may want to check the Team Gleason website for financial assistance to purchase a tilting/rolling shower chair. I don’t have all the info handy right now, but will add another post with more detail. Thanks for your patience.
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OMG-this is all so timely! The SitnStand Portable Lift Chair sounds perfect for getting out to see friends without getting swallowed in their sofa. And from the video on the website we learned that it can raise a person up to a height of 8″, which is a lot! Now to check our adjustable bed to see if we can “uncouple” the 2 platforms. I just wish that Medicare would cover this stuff–if the goal is quality of life then being able to get up from a chair or out of bed or off a toilet safely, without injuring yourself or a caregiver, is CRITICAL. Thanks to the team on such great advice!
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I joined the in-person caregiver group the week after my husband’s dX in Jan 2020—it was in the small town where I lived so super convenient! Then COVID hit and the group was switched to online Zoom which I think has worked well. We are still doing the Zoom call once a month and participants are from close-by surrounding counties and the group is growing. I attend most of the time. We share the difficult stuff and share advice and resources. Because we are basically a local group many resources are often local as well i.e. contractors, places to go that are accessible (like the accessible trail on Mt Tamalpais), restaurants, etc. I also get newsletters, updates and participate in webinars and seminars from IAmALS (https://iamals.org/), Everything ALS (https://www.everythingals.org/) , the Healey Center at Mass General (https://www.massgeneral.org/neurology/als), Les Turner ALS Foundation (https://lesturnerals.org/) and stay connected locally with info from my local ALS Association Chapter (http://webgw.alsa.org/site/PageServer?pagename=GW_homepage) I’m probably leaving one or two out.
Granted, as a caregiver, I can’t spend all day reading, watching and listening so I pick and choose from the vast menu and share with my husband as appropriate. All the incoming info can seem daunting at times, but I’m grateful to have it!
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We’re excited to have a non-infusion option! My husband has been on Radicava for ~2.5 years and I was trained to administer the drug by infusion when he started treatment early in 2020. A nurse comes to the house to activate the port at the beginning of a cycle and then mid-cycle to change the needle. I’ve been trained to deactivate the port and was learning how to activate the port until the announcement about oral Radicava. Over the years, we’ve developed an infusion routine that also includes shaving the port site and surrounding area, covering the port site (when activated with the needle) with a 7″ x 7″ water shield, and timing infusions so that on needle change day he is ‘needle free’ for at least 24-30 hours. It’s been a labor of love.
That said, he’s already reached out to his neurologist and is in the process of applying to get it as soon as it becomes available. It would be good to have clinical data about the efficacy of oral/feeding tube delivery compared to IV delivery. I’ve been looking for the study and I believe that more info will be released soon.
As Owen pointed out, oral Radicava changes the calculation significantly—easy to administer, same regimen as IV Radicava, no port and associated port issues or maintenance (although a port is handy for blood draws), etc. It’s a game changer. I sure hope insurance will cover it—it’s got to be less expensive than the hands-on human time (pALS, caregiver and a nurse ) and plethora of materials (saline, heparin, IV lines, needles, dressing change trays, alcohol pads, gloves) to deliver the therapy.
I’m all in!
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This is such a hard question to answer. All I can offer is “there is no control _____” fill in the blank of the name of your loved one. Were there a scientific control for my pALS I would have a more definite answer. So yeah, I don’t know if any of the meds (FDA or experimental) are working. And I can’t tell you the impact of faith, positive attitude and acceptance of one’s disease have on ALS (although studies generally appear to lean favorably in this direction for ALS and terminal illness). ALS and its manifestation are so unique for each pALS that it’s nearly impossible to know if your pALS is benefitting from Radicava, Riluzole, home brews of sodium phenylbutyrate and TUDCA, Theracurmin, clinical trail meds and EAP meds, vitamin B, lotsa kale and green tea, whatever you’re taking. What’s most interesting to me though is hearing your stories, hearing about your PT programs, your OT recommendations, what devices you use to get your pALS safely showered and moving in their environment, what your diet includes regarding antioxidant and anti-inflammatory foods, and how you manage mentally from day to day as a caregiver, etc. I wish it were as simple as twice daily Riluzole tabs and Radicava infusions (which we do 10 out of 28 days every month). Again…There is no control for my pALS. And yet we press on and meet each day and all that it holds. Peace out.
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Awesome Lisa! Just awesome. Thanks for representing us!
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Is this a Bridgestone or a Brookstone model. I googled Bridgestone and search results came up Brookstone. Do you have the model number? Thanks!
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Dustin–what is the make and model of your lightweight transfer chair that you use for travelling?
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Dagmar—looking forward to the new thread on ‘how to maintain one’s voice’. Thank you in advance. Mary
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Agreed and preaching to the choir. All the more reason to stay involved on the advocacy front. Surely we caregivers have plenty to do and we know our pALS do as well. Do what you can, share what you know and keep writing your reps! Best to you all! Take good care.
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John-You mentioned the mattress is “flexible to allow the bed to bend with the motorized platform.” Did you put this mattress on a hospital style bed (like a Rom Hil hospital bed frame) or did you purchase the Nectar adjustable base? And what size did you get for Julie? We currently have a King on an adjustable base and my husband is not having any breathing issues so he can sleep flat. I’m trying to look a bit down the ALS road and prepare. Thanks! —Mary
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Please carefully read this very long press release about Radicava ORS. There are links to resources including the JourneyMate program which may help you understand and provide information and support for obtaining Radicava ORS. https://www.mt-pharma-america.com/2022/05/12/mitsubishi-tanabe-pharma-america-announces-fda-approval-for-the-treatment-of-als/
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Dagmar-do you have a link to your ‘rehab’ program? I’ve subscribed to your blog and thought I saw something there, but alas I can’t find it. Thanks-Mary