Hey everybody.
One of our long-time BP peeps has been diagnosed with ALS (Lou Gehrig’s disease). Diagnosis was in February and it’s progressing quite rapidly. No, we are not going to say who it is; if they want to let everyone know at some point, that will be totally up to them.
They are curious to know if anyone on Bj has any experience with ALS. If you do, and you would be willing to share your experience in the comments please chime in below. If you would prefer to communicate by email, please send email to WaterGirl.
AM in NC
I am no help, but am putting out strength and love in the world for this person.
Sister Golden Bear
No suggestions, but keeping them in my thoughts.
Maxim
I’m very sorry to hear this.
Baud
That bites. Wish I could help.
Dangerman
No experience. Steve Gleason (football player) put out a long video. Might give some perspective.
Parkinson’s I know (Uncle). ALS, no.
Mousebumples
My grandpa had ALS before I was born. Friend of my dad’s has had it for awhile (so could be a misdiagnosis or else a very slowly progressing kind – he had something not yet identified ~6 years ago).
From a pharmacist perspective, there aren’t many established, effective therapies. (1 accelerated approval therapy was pulled from the market earlier this year after failing confirmatory trial) I’m hoping you can see a doctor who’s experienced in this area. Local docs are good, but with something this rare, asking for a specialist referral may be worthwhile.
Good luck. I wish I had more to offer.
zhena gogolia
I’m sorry for this person and hope they get good care. I have no personal experience.
JaySinWA
My neighbor had ALS several years ago. He died about 2 years after diagnosis as I recall. I think he was in his late sixties. Very debilitating disease and can be difficult for people around you to manage. Don’t be ashamed to get help. If staying at home make sure you have access to some form of home health care to lighten the load when things start to get worse.
SiubhanDuinne
I’m so sorry to hear this, and am sending light and love to the BJer in question (which means to the entirety of the Jackaltariat). I have no experience or even very much knowledge of ALS, so can’t help in that way, but knowing the wealth of wisdom and information around here, I’m sure it will be forthcoming. All best to you, anonymous Juicer.
narya
Check out clinicaltrials dot gov. You can set filters (e.g., include only open trials, or include trials that have completed, etc.) that suit you. I popped in there regularly to see if there were emerging treatments for bladder cancer for my dad–even if there isn’t an open trial near you, sometimes you can identify possible treatments or, if you want to contribute to knowledge, sometimes there are trials that are more of a registry so that the investigators get a better understanding of some aspect of a disease.
ISTR that there was a recent breakthrough in understanding the causes, and there’s hope that that will eventually lead to treatment, but the “eventually” is doing years of work in that sentence. Also: sending love and care your way.
Grover Gardner
Oh dear. I’m very, very sorry to hear that. I’ve known three people with ALS–a brother-in-law (this was probably 40 years ago); a professional colleague; and my nephew, who died of ALS at the age of 43 about 6 years ago after a two-year struggle. Sadly, there isn’t much in the way of treatment, let alone a cure. Modern computer technology can help extend the period of communication and participation, and my nephew was able to take advantage of this to savor a few extra months with his wife and children. But when he reached the point at which he was losing the use of his eyes and would no longer be able to communicate at all, he asked to be taken off his respirator.
I fervently hope our friend here is granted some small reprieve and some extra time to be with friends and family. Perhaps some sort of medical breakthrough will come, you never know. I wish them the best.
geg6
Sending light and positive thoughts to this jackal. I only have a very small experience with ALS. My campus’ Chancellor, Dr. Gary Keefer (RIP), was diagnosed with ALS about two years before he retired. He was a good guy and the best Chancellor we have had in my 26 years there. Once diagnosed, he still was a steady hand and leader, whether fully upright, with a cane, with a walker and finally a massively high tech wheelchair. He worked until he literally couldn’t any more and I didn’t have to witness his final decline. He was gone within a year. Not a happy or uplifting story but, as Gary would have said, an honest recounting of what I witnessed.
I also know of others who the symptoms didn’t progress quite that rapidly. These have been friends or relatives to my friends and relatives, so no real personal experiences to recount.
Keith P.
I had a HS and college classmate get diagnosed in college. We had hung out at Mardi Gras in sophomore year before he xferred, and I heard years later he had ALS. I saw a TV interview where he was just starting to have trouble speaking, and I got to hang out with him a few months before he passed with a bunch of other HS friends. By then, he had a nurse speaking for him, which was pretty tough, but it was still good for everyone to get together with him.
JaySinWA
@geg6: Yes it can be devastatingly fast and I think that is the usual progression, but Steven Hawking was a long term ALS survivor and was still doing a lot of work until he died.
geg6
@JaySinWA:
Yes, that’s true! He had a very long and productive life after diagnosis. And a wicked sense of humor.
Liminal Owl
No personal experience, sending love and hope.
Goku (aka Amerikan Baka)
Not very much personal experience with ALS for me. I had a teacher in HS that was diagnosed and she lived for several years afterwards. No idea what her quality of life was like but I recall she was already affected several months after diagnosis and needed to walk with a cane, right as I graduated
Sending warm thoughts and love to the jackal who’s been diagnosed with this awful disease
TBone
My advice is to get a very, very careful diagnostician.
https://www.als.net/news/als-vs-lyme-disease/
https://www.illymeassociation.org/blog/a-lyme-story-reclaiming-life-from-als
Betsy
I am pulling for you.
Anonymous At Work
We have a dynamite ALS researcher down in South Florida if there is a need to enroll in clinical trials. Best I can offer. Social experience has been with muscular dystrophies. Let me know.
A.J. of the Mustard Search and Rescue Team
Sending care and good energy 🙏🏻
twbrandt
I am so awfully sorry to hear this. I have no practical advice or experience to give, but love and warm thoughts. You are not alone on this journey.
Suzanne
I have no advice or experience, but I am holding good energy for this person.
Scout211
I have no personal experience with friends or family members with ALS, but my thoughts are with you, long-time jackal. ❤️ Sending love, strength and healing thoughts.
TKH
The CEO of the local NPR station came down with it a few years ago. His team posts under teamjose.com on how they deal with the progression.
Miki
Oh …. Sending warm, embracing, peaceful thoughts to the Jackal and all who know and love her/him/them.
I have no immediate experience with ALS, but I learned a tremendous amount about living with it from a 31-part broadcast series of conversations on Minnesota Public Radio between Cathy Wurzer, broadcast journalist, and Bruce Kramer, educator and musician and ALS patient. They also wrote a book together – We Know How This Ends – Living While Dying
It feels wrong to point solely to dying, so I’ll just say I felt Bruce and Cathy always kept the focus on living in this series.
❤️
Marci Kiser
My father had ALS for 25+ years – of his three children I’m the only one who remembers him healthy. I wouldn’t wish it on anyone. Not even Donald Trump.
What I learned:
Chacal Charles Calthrop
so very sorry to hear this!
sorry nothing much to offer
Gus diZerega
I am mostly a lurker, buit I have something to contribute here.
One of my closest and longest time friends died of ALS a couple of weeks ago. I just returned from his memorial/celebration of life today, which was a beautiful event with tears, laughter, connecting with people I hadn’t seen in a long times, and as beautiful an event as something like gthat would allow. My friend hoped to attend the event and wanted everyone to tell funny stories about them and him, but his decline was too quick.
His decline was very fast- from seeming healthy and energetic to the end was 9 months.
He went out with medical assistance surrounded by close family. The last picture taken of him. he was smiling.
His mind remained razor sharp all the way to the end, and he wanted control over that end because the alternative was having a breathing thing down his throat to prolong a life no longer worth living since he would not be able to breathe, talk, or swallow. When he “checked out” he was completely bed ridden.
Hopefully your friend will make their wishes clear while they can, including a celebration of life, if desired, and control over their passing if that is what they want. From all I know and have experienced there is no point in hoping for a miracle, or anything like that. It is 100% fatal- but the [person will keep their mind till death.
stinger
My father had ALS. I’m afraid I was in denial much of the time — look at Stephen Hawking! — but my dad went downhill pretty fast, living 7 months after diagnosis. Although as a tough farmer, he may have experienced symptoms long before he went to a doctor about it. Also, he wasted months of time and money going to a quack several states away whose “treatments” I’ve always thought contributed to his rapid worsening. But regular medicine offered nothing, so I can’t blame him. This was nearly 40 years ago.
My dad had the “limb onset” form, meaning he got weaker in his legs and arms before it progressed to other muscle groups. Mentally he was alert and normal, though speaking became difficult near the end. The last to go was his breathing, and he died quietly in his sleep one night. Thanks to Hospice, my mother was able to care for him at home to the end.
And I’d like to thank people for calling it ALS. We don’t name diseases by a famous sufferer, we call them by the physician or scientist who put the symptoms together (e.g., Alzheimer’s, not “Ronald Reagan’s disease”) or as in this case by naming the symptoms (usefully, in Latin).
I’d be happy to try to answer any specific questions, though I wasn’t living at home at the time and, as aforementioned, was living by the river in Egypt.
Hungry Joe
My father had ALS and died of it — indirectly — at 81. He was diagnosed with a related nerve disease that, we were told, could become ALS, and after a few years it did. He didn’t have breathing problems, but his legs, hands, and fingers became progressively weaker. He couldn’t stand being seen with a walker, so he enjoyed going to the grocery store with my mom because he could walk around — slowly — while pushing/ hanging onto the grocery cart. Entirely aware of his deteriorating condition, he suffered from terrible anxiety and panic attacks.
He was participating in a double-blind clinical drug trial. Four times a day he’d say,”Well, it’s time to take my placebo.”
One day I was looking after him while my mom did some errands. I was helping him up into his walker when he went limp and collapsed backwards, into my arms. Massive heart attack. He never regained consciousness.
NutmegAgain
Nothing practical to offer, sorry. But sending love & strength
Cheryl from Maryland
Warm and bright thoughts.
Anyway
So sorry to hear this. A colleague and friend passed away last year about 20 months after being diagnosed with ALS.
Sending love and good wishes…
Dagaetch
Nothing to contribute but well wishes.
Salt Water
My cousin was diagnosed in about 1988. Prognosis then was 2-5 years. He had what I called the Stephen Hawking strain. He lived 18 years after diagnosis.
A friend’s husband died a year ago from it. He went quickly.
I would echo what’s been said. Decide what you do and don’t want in medical intervention. A support group or therapist will be helpful.
Think of specific questions to ask the ALS community. They’ll be happy to give you info and their lived experience.
If family or friends are caregivers they’ll need some breaks. They should avail themselves of support groups too. If a family member is your caregiver your state may have a program where they will get a stipend for caring for you in the home.
Take care Anonymous Friend
Omnes Omnibus
Good thoughts to the jackal and their family and friends.
Ruckus
Have dealt with Alzheimers (family) and polio (2 friends, 1 current) but not ALS.
Those are the 2 biggies, most people my age had every or most every illness because we were born before all but one vaccine, Smallpox.
WereBear
Dr. Terry Wahls, MD, has a book, website, and inspirational story.
She has MS, but got out of her wheelchair. Helped with my autoimmune. Doing a long term study at a university.
Wahls Protocol
I was also encouraged by Stephen Hawking’s 1st wife’s biography. The diet she gave him fits into the Wahls guidelines.
Anyone can reach me with my nym.
eclare
I am so sorry. Wishing you and your family peace and strength.
Ksmiami
My mom as a nurse says it’s a horrible disease but palliative care is the best protocol
stinger
@Hungry Joe: Thanks for sharing this.
stinger
@Gus diZerega: Thanks for sharing this.
Salty Sam
I have no personal experience with ALS. But when my wife passed away unexpectedly at an early age, this book helped me get through the loss. Written by a young man (35) diagnosed with ALS, his recounting his experience as his condition progressed was one of the most uplifting things I’ve ever read.
https://www.learningtofall.com
stinger
@Marci Kiser: These are good tips, thanks.
stinger
@Grover Gardner: My sympathies; thanks for sharing.
GTC
hey, i’m a lurker, but my wife has a condition similar enough to ALS that she is treated at the same clinics, so here are a few practical things we have learned:
Starfish
@WereBear: Wahls is really questionable. That is the path of quackery, and I think they put a disclaimer on her Ted Talk.
It is not “science” when you are the only person in the group being studied, and you are not sharing your data so other people can see if it can be replicated.
H.E.Wolf
Sending my sympathies. May you have time with your loved ones, and the best of medical care.
Salty Sam
@Salty Sam: I would add to those counseling planning ahead. As a hospice volunteer, I’ve seen that most people wait far too long to get involved with hospice. Palliative care can (and should) begin NOW.
I also highly recommend engaging the services of an End-of-Life Doula. They are trained as compassionate “accompaniers”, to help in planning, family respite, and grief support. You can find one in your area here:
http://nedaalliance.org/
BigJimSlade
@Hungry Joe: My god, I hope you have recovered.
zhena gogolia
This is a heartbreaking thread. I wish all the best to the BJ-er involved, and to all of you with these experiences.
CaseyL
I am devastated to hear this.
There is an experimental new drug, FB1006, which is wrapping up its clinical trials this month.
There is also – I think this is a different drug – monepantel (MPL), which I think has recently completed Phase 1 trials. Here is an article about it.
The only suggestion I can think of is to get in touch with an ALS advocacy group for help finding out about and possibly joining some of these clinical trials, or getting more info about new drug availability.
Ohio Mom
Holding our anonymous fellow Juicer in the light.
Lyrebird
Thoughts of light. Not sure whether or not the individual will want to read this from an obit for Paul Hill.
When he retired from conducting his eponymous choral group, or near that time, they did a concert called “Sing Me To Heaven” – it’s still hard to even look at the CD case w/o the room getting mighty dusty all of a sudden. (Group is now called the Master Chorale iirc, DC area peeps might have gone to a concert.)
ETA: not meant as moralizing, just memorializing a truly good and gifted person taken way too effing soon.
ArchTeryx
@JaySinWA: The reason that happened is that, for reasons completely unknown, the ALS stopped its progression before it killed his swallowing muscles. That’s usually the point of death for an ALS sufferer. Medical researchers still aren’t sure, IIRC, why that is, but it saved his life. The other ALS sufferers I knew the disease was terminal.
I hope it isn’t ALS, as was listed above, it could be Lyme. That’s still quite serious, but it’s not terminal if treated properly and there ARE treatments for Lyme.
Denali5
So sorry to hear this. Hope this juicer finds comfort and knows that we all are there.
ArchTeryx
@Starfish: Quackery is very, very tempting to people with a degenerative or terminal disease like ALS. They figure “what can I lose?” and the answer is money badly needed for actual medical care. Don’t fall for those predators, whoever you are. They come out of the woodwork when you’re very sick – I know this from suffering from Crohn’s.
Rachel Bakes
Someone in my hometown has ALS and he now has a support team made up of my brother and the other firefighters and emts; someone is there to help him get out of bed and dressed for the day and someone else is there at day’s end to help him get ready for bed. Brother also took him out holiday shopping last Christmas.
sending thoughts of light for all
rikyrah
I have no suggestions. Only prayers🙏🏽🙏🏽
SeattleDem
One of my brothers died 10 years ago from a genetic version of ALS. One of my nieces was diagnosed with the same mutation 6 or 7 years ago and was given a 2-5 year survival prognosis. She found a clinical trial in Houston where she was put on low doses of a cancer treatment drug. Her ALS symptoms have largely stopped progressing since then, but the side effects of the drug can be annoying. As others have mentioned, you would be wise to get in touch with an ALS advocacy group like the ALS Society for accurate information and support. I’m sure my niece would be happy to talk to the Jackal in person, if he/she wants more specifics. The front-pagers can reach me for her email address.
dkinPa
So very sorry to hear of this. Sending love and hugs out to you.
My cousin works for the ALS Association, and I’ve learned that they are always trying to improve care and improve quality of life. They can help with a lot of things including home visits, so please reach out to the nearest office.
Kristine
No experience with the disease. Can only offer heartfelt sympathies and best wishes moving forward.
stinger
@SeattleDem: That’s encouraging; glad she’s stable. I hope the side effects aren’t too bad and that she stays well.
LeftCoastYankee
A friend of a family member has ALS.
The ALS Association has been a good resource for info AND for providing equipment etc free and quickly.
Given all the other stresses for the patient, family and loved ones, free and quick help is a blessing.
PaulWartenberg
ohmygod I am so sorry.
Soprano2
I am so sorry. I have had no experience with ALS, but there are a lot of good suggestions on this thread for anyone facing a serious illness. Holding you in the light.
Soderbee
Ady Barkin was a well known healthcare advocate with ALS. He wast featured in a documentary that was shown on PBS. I only found the trailers on YouTube but if you have Masterpiece you can watch it on demand. (Maybe a free trial if you don’t already have Masterpiece). The film is titled Not Going Quietly. I have not seen it myself but I followed him a lot while he was pushing for healthcare reforms. He was an inspiring guy.
SFBayAreaGal
I wish I could be of help.
Beloved BJer, my sympathy and best wishes.
NotoriousJRT
Oh, dear, I am so sorry to hear this. Sending heartfelt energy to you and your family & friends.
dlwchico
About 4 months ago I noticed my stride was off when I was walking.
I didn’t know what was causing it but soon I was limping. I realized that my right leg wasn’t working right.
The muscles of my calf/lower leg were not responding like they should. I could not lift the toes of my right foot.
I have had my back x-rayed and they found nothing. 2 months with a physical therapist but he said he wasn’t doing anything that helped so I went back to the doctor and got an MRI of my lower spine and they found nothing.
I am now waiting for my first appointment with a neurologist. It is still nearly 2 weeks away.
I made the mistake of googling my symptoms several months ago and my brain has latched on to ALS.
It has made my life rough for these past few months. Just not knowing. I don’t know what to prepare for.
Maybe I had a stroke and didn’t realize it or maybe this is some type of long covid (though as far as I know I never had covid).
For an afternoon I was feeling pretty good mentally because I read that this sort of ‘drop foot’ can be caused by people having their legs crossed a lot and by pressure on the knee and I sit at my home office all day and often have my leg crossed and my knee pressing against the edge of the desk enough that I have a callous there.
But then my brain was like “nope, it is probably ALS”.
I load up on edibles before bed to try and help me wade through the terrible images my brain sends me as I try to get the depths of sleep.
I am very sorry to hear about anon’s ALS diagnosis. Getting the same thing is my own nightmare right now.
Betty Cracker
I’m so sorry to hear of this, anonymous friend. No practical advice to offer, but sending positive thoughts your way.
@dlwchico: How frightening, and I’m sorry you’ll be kept in suspense for so long. Hoping for a good outcome.
fancycwabs
My maternal grandmother died of ALS nearly fifty years ago, and while I have some memories of her I doubt they’d be helpful (or particularly useful, given the advances in medicine in the interim). I’m sorry you’re having to go through this.
bluefoot
Firstly, my thoughts and good wishes to the Jackal dealing with this.
From what I know, ALS can be a pretty heterogeneous disease, affecting different people differently. That is, whether your upper limbs are affected first, or your speech, etc. I want to second @Marci Kiser:
Invest early in the things you’ll need and find support that works for you.
There are some new drugs in trials or just approved, but I think most are for familial (genetic) forms of ALS in that they target a specific gene/protein so may not be appropriate for you. But check out clinical trials! Not just for new drugs but also other types of treatments.
Manyakitty
Very late to this thread, but sending love and light to all of us.
Paul in KY
@Dangerman: I saw Pearl Jam back in 2014 at Voodoo Fest. They brought out Mr. Gleason (ex Saint) and did Yellow Leadbetter for him.
Very emotional. Glad Steve still hanging in there. He’s a very tough hombre. That said, it appears you can get differing ‘doses’ of ALS and it is much more aggressive in some people.
My poor 1st cousin got a bad dose of it and died after about 3 years. RIP, LP! She was a wonderful person.
Paul in KY
@JaySinWA: Not sure if he had ALS. Maybe had a form of SMS.
justinb
I would recommend https://www.brainandlife.org/books/navigating-life-with-amyotrophic-lateral-sclerosis – written by my mother and my stepfather