MaryConnolly
Forum Replies Created
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Amanda! Such great news and I’m thrilled for you! My husband, Jay, who participated in the Healey Platform trials, passed away April 2024. We both read your forum contributions. I hope and pray that this therapy continues to open new doors of healing for you–it can lay the groundwork for those who follow. Thank you for participating in a trial!
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You are not out of your mind. My husband presented with spinal stenosis and that is what the neurologist thought was causing his upper limb weakness—mostly right arm. My husband had the surgery May 2018 and function was improved the next day. After a year of intense physical therapy to increase strength in his arms we believe he came to a point where the therapy and his condition did not improve and the upper limb weakness, while dramatically improved, just didn’t get better. On a very long drive in traffic (a year later to the day-May 2019, and ~5 hours) when we arrived Jay’s arms were just wrecked. Holding them up for that long holding the steering wheel was too much. Things were different after that. He could not hold or carry a plate of food at the wedding and did eventually “recover” from that event, but we knew something was different. Over the next several months we did see his spine surgeon again and then our local neurologist who suggested we see the neurologist team at UCSF, which is an ALS Center of Excellence. There we saw another neurologist ( Dr. P) who completed a full neuro-exam, ordered a full body EMG, and a battery of blood tests covering everything from genetic mutations for ALS, autoimmune diseases, heavy metal accumulation, and blood panels that we didn’t know existed (18 vials of blood) My point is that my husband was tested for everything Dr. P could think of. “Everything” was ruled out and the full body EMG pointed to sporadic ALS—devastating news in Jan 2020. Sporadic ALS occurs in 90% of pALS and has no known cause. Genetically caused ALS occurs in ~10% of pALS. My husband was very functional i.e. walking without any assistance, talking, eating, hiking, breathing normally and was able to dress, shower and take care of himself. We made accommodations as needed e.g. putting milk in a small container so he could make his own coffee, etc. Here’s the IMPORTANT part of the story—Dr. P told us that spinal stenosis and ALS can exist at the same time in a patient. At first a patient may appear to have improved function, but at some point the neurodegeneration brought on by ALS “takes over”. I encourage you to read this very recent study and discuss with your neurologist https://pmc.ncbi.nlm.nih.gov/articles/PMC10836407/. If your neurologist is not part of an ALS Center of Excellence I suggest getting a referral from your neurologist to a neurologist at a Center. Don’t know where you are, but here is a searchable link to find one in your area: https://www.als.org/support/certified-centers-clinics That EMG that you wanted to have and additional blood, genetic, and biomarker testing to confirm/rule out ALS are, in my humble opinion, critical to an accurate diagnosis and your peace of mind and may help forge a path forward. It is common knowledge among pALS and their treating medical teams that it may take up to a year to get a “definitive ALS diagnosis”. Receiving treatment early is important. I also suspect that neurologists are reluctant to point to ALS which at this point is a clinical diagnosis. You may be interested in this Expert Talk Series from Everything ALS (You Tube; Oct 16 2024) which featured discussion with Dr. Michael Benatar (University of Miami) about the Miami Framework for ALS and Related Neurodegenerative Disorders—it is very well done—ask your neurologist if he/she knows about this: https://www.youtube.com/watch?v=X-3Ze5rdipU
All that said, my husband’s ALS was designated very slow progressing. He participated in clinical trials, eventually retired from a robust law practice to focus on his health and quality of life. He was “on track to live” with ALS for several more years. He passed away this year in April—but not from ALS complications per se. He had been having digestion issues which are common to ALS or so we thought. Our instincts to ask questions and investigate further, and the support of Dr. P and the UCSF team, led us to a diagnosis of esophageal cancer which caused my husband’s rapid decline over 3 months.
I mention all this because this disease can sometimes look like something else at least initially. Your persistence, curiosity, resilience and advocacy are your allies as they were ours despite the outcome. There are resources available to help you and there are neurologists for whom ALS is their specialty. I wish you a mountain of hope and rivers of peace in the days and months ahead.
pmc.ncbi.nlm.nih.gov
Background: Spinal stenosis and amyotrophic lateral sclerosis (ALS) can co-occur and both manifest as signs of dysfunction of lower and/or upper motor neurons. Few studies have identified factors that alert the diagnosis of ALS in patients with ...
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As others note this is a difficult decision. Since more is known with genetic ALS it would follow that clinical trials, treatments and perhaps a cure would be more widespread and that the science is further along—gene therapy and genome research has been around a while and only limited in part, in my opinion, by the rarity of a disease and lack of funding for basic research. Perhaps there is more hope. My husband recently passed, he’d had sporadic ALS since Jan 2020, and he insisted on the full battery of genetic tests so that we could include our daughter in any long-term planning, testing and decision making regarding her own health. It’s devastating news to receive about a family member, or yourself, but to be informed may provide “relief” or at least guidance for how to approach the future. Best of luck to as your journey continues.
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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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Only one side? That makes no sense medically or logically. Your EMG should be full and complete—that’s BOTH sides of your body—top to bottom and including front to back—yes your back where the 3 groups of paraspinal muscles (erector spinae) are. It’s important to have a baseline even if you are impaired more on one side than the other. Your nervous system is literally like the electrical system in your house. There’s the main panel, sub panels and wires going to every switch/appliance in every room requiring electrical energy. Your body is the same with its very organized brain, spinal cord, upper and lower neurons and nerve cells that connect to all the parts. Demand it—you are worth it! We are here to support you.
Mary
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If your neurologists says that you don’t fit the criteria for ALS because of the discrepancy between upper and lower motor neuron involvement and if your clinician is at the Mayo, then I’d like to direct you, and more specifically your care team, to this verbiage from the May Clinic website (link below) :
“ALS affects the nerve cells that control voluntary muscle movements such as walking and talking. These nerve cells are called motor neurons. There are two groups of motor neurons. The first group extends from the brain to the spinal cord to muscles throughout the body. They’re referred to as upper motor neurons. The second group extends from the spinal cord to muscles throughout the body. They’re referred to as lower motor neurons.
ALS causes both groups of motor neurons to gradually deteriorate and then die. When motor neurons are damaged, they stop sending messages to the muscles. As a result, the muscles can’t function.” See https://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/symptoms-causes/syc-20354022 This is basic knowledge. Wishing you well.
mayoclinic.org
Amyotrophic lateral sclerosis (ALS) - Symptoms and causes
Amyotrophic lateral sclerosis (ALS) - Symptoms and causes
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Reading this makes me kinda crazy. Especially the notes which may not be thorough enough. If you can, write down your version of the sequence of events–that way you don’t have to remeber dates and events and doctor visits i.e. keep your own records and get the records from your neurologist–get everything including test results, images, etc. Before we went to the new neurologist Dr. P, whi I mentioned before, we provided a binder with all hardcopies and scanned documents electronically. Then use these to inform your GP and also a second opinion from another neurologist. If you are in Massachusetts please get in touch with the ALS Center at Mass General. Sending energy your way.
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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