MaryConnolly
Forum Replies Created
-
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!
-
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!
-
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.
-
Awesome Lisa! Just awesome. Thanks for representing us!
-
Have you looked into the Healey ALS Platform trial at Massachusetts General Hospital(Harvard). Here’s the link: https://www.massgeneral.org/neurology/als/research/platform-trial I don’t know where you live, but their clinical trials which are testing multiple drugs at the same time, are recruiting and trials are going on now at 53 sites across the country: https://www.massgeneral.org/neurology/als/research/platform-trial-sites
Contact the Healey Center by phone: 833-425-8257 (HALT ALS)
Email: [email protected]My husband participated in the Healey trial for one of the drugs and is now receiving active medication through their open label extension program. We live in Northern California and are near a trial site.
You probably know about the ClinicalTrials.gov site and this map shows where many clinical trials are being conducted across the US: https://clinicaltrials.gov/ct2/results/map/click?map.x=368&map.y=349&recrs=a&cond=ALS&mapw=1620
Finding the appropriate clinical trial is a daunting task and I wish you well in your efforts to find one. I hope this is helpful.
-
Thank you Jim! In some of the webinars caregivers have described ceiling tracks and I didn’t have a brand or knew what they were called–now I do. We were preparing to remodel our home and now, post ALS diagnosis, there are numerous modifications to consider e.g. blocking inside the walls for grab bars and folding shower seats, additional support infrastructure in the ceiling for tracks, extra plugs for power lift, ‘smart’ faucets, etc. Since we’re going to be on this ALS journey we’re aiming to reduce the daily struggles.
-
Dave-We acquired a LiftSeat from a friend whose husband had ALS. Here is a link to the item: https://liftseat.shop/products/liftseat-independence-ii-toilet-lift This lift runs about $1400. My husband can still stand up from seated position, but getting off the toilet is a challenge from time to time. The LiftSeat can be outfitted with a bidet, and if you get a bidet you’ll need an outlet closeby with 2 plugs–one for the LiftSeat and one for the bidet. My friend ordered several items fromLiftSeat (LiftSeat Independence II, Brondell 1400 Bidet, Bidet Extension Kit, Big Button Hand Pendant). We also have a splash guard. Contact info for LiftSeat is (630) 424-2840; [email protected] Website: http://www.liftseat.com
-
Dagmar—is the Original Strength program you follow the work of Anderson and Neupert? I’ve seen a book and videos out there on the internet.
-
We had vax #2 on Friday. Sore arms and feeling a little tired and relieved. Get your vax-it’s better than being dead.
-
And to you Kathy Stitz and Dagmar and all of you – dealing with ALS and its challenges are no small task for pALS or their caregivers. Blessings.
-
Both my husband (a pALS) and I (caregiver) get #2 Pfizer April 9. We’ve alerted our neighbors in case we need anything, but have basic provisions ready. At the worst it’s 24-48 hours of discomfort and we can skip a shower or two. Getting vaxxed means no interruption in our participation in the Healey Platform clinical trial and Radicava infusions. It also means that after a year of isolation we can finally reconnect with family and friends who have not seen us for a year.
-
Absolutely the right decision for me, my pALS husband and our daughter who we’ve only seen twice(she lives out of state) since his diagnosis in Jan. We’re also encouraging our extended family and friends to get vaccinated as they are important hands-on support for both of us. ALS can be isolating enough and then COVID made it that much more so. And from what I know about side effects it is well tolerated. I’m trusting the science in this one and advice from family friend Jim Baker MD an immunologist and brilliant doc who studied under Dr Fauci—Baker writes extensively about Covid science at pandemicpondering.com something you might want to check out. So yes-after seeing my sister and niece suffer through Covid for months there’s no doubt about getting the vaccine (Pfizer or Moderna’s mRNA version).
-
I found the article regarding OTC pain relievers to be terribly misleading. And the worst part was that the last paragraph was very telling and revealed the truth—if the reader got to the last paragraph. Maybe authors should have started with the last paragraph first. I’m really disappointed in ALS News editorial staff for allowing that article to be published. I look to this site for real newsworthy topics based on excellent science, and I’m a little (ok a lot) wondering what value articles like that bring to the table. Spend time on clinical trials e.g. Healey Platform and others taking place in other countries. Perhaps explain the importance of pALS enrolling in that important research and the mechanism of how the experimental drugs work — and yes at the cellular level and in everyday language. It can be done and many of us do it everyday as we take the deep dive to explain the science to our pALS, family and friends. I’m a longtime science educator and my husband was diagnosed in Jan 2020, so we are new to ALS which is a pretty steep learning curve even if one has the science background. That said, I’m grateful to have a forum like this even with its periodic shortcomings.
-
My husband diagnosed Jan 2020 at age 61, on Riluzole and started Radicava Mar 2020. His onset was upper limb. It’s hard to know if progression has slowed because there is no “control” for my husband. I administer infusions at home and deaccess port. Nurse comes 2x in the 10 day cycle to access port.
On a related topic we know that ALS manifests itself differently in each PALS, with some progressing faster and some slower—which makes it harder IMO to determine if pALS progresses slower due to Radicava–again there’s no ‘control husband’. Perhaps having an idea about where a pALS start on the slow or fast progression scale could be helpful.
That said, we read a study about an alternative to the ALSFRS and how a clinician could better predict if a pALS would progress faster or slower. The summary and info for that article is embedded below and also here: https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(18)30089-9/fulltext Article discusses the ENCALS prognosis model (Netherlands) and you may be interested to have your clinician use it to predict where you are on the scale and maybe it can help guide your treatment—especially if you are thinking about Radicava. It may also help your decision to participate in valuable clinical trials that are available e.g. Healy Platform Trials. Maybe these are both topics for another thread. Blessings to you all–we are all in this together.
-
Dagmar—-I would love to see photos of your shower set up. We are going to remodel our modest master bath to make it more accessible. In the Accessible Home book I’d seen some bathrooms with curbless roll-in shower, but only a few with curtains which I think are preferable to any type of doors. We are also considering the “wet room” style but don’t know how wood cabinetry survives that setting. We have 8.5ft x 7.5ft to play with and are considering making the bathroom slightly bigger-our architects are creative. Can you send photos to me? Appreciate it greatly.
-
Ragnar-I would love to see photos of your shower set up. We are going to remodel our modest master bath to make it more accessible. In the Accessible Home book I’d seen some bathrooms with curbless roll-in shower, but only a few with curtains which I think are preferable to any type of doors. We have 8.5ft x 7.5ft to play with and are considering making the bathroom slightly bigger. Can you send photos to me. Appreciate it greatly.
-
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/
-
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
-
Question for Anne: What Classical Stretch program do you use? My husband’s onset was upper limbs and he’s been having some lower limb issues for a while. I’m curious to find out if what you are doing would be a beneficial add-on to my husband’s self-care routine. Thank you for sharing your story.