On Wednesday evenings, for most of the last 15 years, i have gotten together with a group of creative women to chat and craft. Some knit, some crochet, some simply come for the conversation and yes, wine.
In 2020, I dropped out. My husband had been diagnosed with ALS, I couldn’t leave him alone and it was rare that my girls could come ov…
On Wednesday evenings, for most of the last 15 years, i have gotten together with a group of creative women to chat and craft. Some knit, some crochet, some simply come for the conversation and yes, wine.
In 2020, I dropped out. My husband had been diagnosed with ALS, I couldn’t leave him alone and it was rare that my girls could come over midweek. I mostly dropped out though because the “founder” of the group kept chastising me for talking politics. Since its damn near impossible for me to NOT do that, it was just easier to leave. After Glen died, I was invited to return via Zoom and did so but mostly kept my mouth shut about anything other than which yarn was better for socks (wool. Definitely wool and preferably hand-painted.)
We meet in person again but the group has dropped from a high of 20+ to just five. Three of the five used to call themselves Republicans. The fourth is a moderate Democrat. Then there’s me- the lefty, liberal outlier.
Last night, the only thing we talked about was politics. Our host, who has earned her millions, was furious about everything- supply chain problems, anti mask/ anti vaxxers keeping her family on edge and fraying her nerves with worry, and the; “lying, cheating, adulterous former President and his minions threatening both our democracy and my ability to conduct business” - Kathy’s words.
She had nothing but praise for the job Biden was doing- which was high praise indeed!
The group founder, Chris, chimed in on praising Biden and castigating the bejesus out of Republicans, specifically in this case Rubio, for his BS lies about harm reduction programming. (Chris’s son, now 10 years sober, is a graduate of such a program.) After praising the Dems and condemning Repubs in general, Chris turned to me and started laughing. Then I started laughing. Then, the uncontrolled near hysterical group laughter took over. Oh, sweet irony…..the Repub group leader broke her own rule and talked smack about politics! About damn time.
When I read HCR’s letter this morning, I felt the all-too-familiar pinch of anger, anxiety and repulsion for the lies, the violence, the dangerous and deadly denial people like Navarro and Gosar live in, and the vast wide conspiracy to destroy democracy in this country. I do my little part to promote and protect democracy but as others here have often noted, I just wish there was more I could do to change this dangerous trajectory we are on.
I’m grateful, every day, for LFAA and this island of sanity with all of you. Now that there are two such islands in my life, I can go island hopping (I’m dreaming of warmer climes. We have snow coming later today. Ugh….)
Thanks for this Your friends' "conversion" gives me hope. I'm glad you're getting your group back, and condolences on the loss of your husband. ALS is a freaking thief; takes the body as Alzheimer's takes the mind.
Hi Ally, I am not one-upping ALS at all — it is a nightmare all by itself, but MS takes both body and mind, and it is typically much, much slower.
The only good thing the sociopath in chief ever did for this country (only because Covid was destabilizing his precious stock market) was the warp speed vaxx program. How I long for such a program for neurological diseases, including spinal cord injuries. Such a program would — as with Covid — mandate sharing information among and between Pharma and universities, all of which presently guard their research from one another, incentivized by patents, grants, publishing rights, and profits. Without such cooperation we may continue to have what we have now: advances in treating symptoms and complications but but little hope for finding a causes and cures.
It is too late for my wife, but not for generations of human beings yet to be. My condolences to Sheila and her family as well.
As long as you want to list awful endings, add in Parkinson's. Watching a partner who was "scalpel sharp" become a "butter knife" who can't remember what the butter knife's for is damn hard.
TC, Parkinson’s is another default neurological disease that there are no words to describe. No doubt in my mind that you are doing everything that can be done for your partner, and I, as the former partner of someone who’s attributes would exceed substack’s storage capacity and crash this whole website, for 50 years and 15 days, I understand you, and honor you.
I used to tell Edie that I had MS too, because she had it, and she was me and I was her. It helped her understand, and sometimes even mitigated her extreme feelings of guilt that she had failed me and our daughter. And I meant what I said to her.
What was not said out loud is that, sometimes, in our weaker moments it is actually harder on the caregiver because we have to watch, despite all of our efforts, we must watch the person we love more than life — the creature who is our reason for existing, go through an indescribable disease. That’s all I can say about that right now, my eyes are sweating pretty hard.
So to you TC, and to loving caregivers everywhere, it IS “damn hard.” It is what love is all about. May that love give you strength, even when it’s over, and they take the best part of you with them.
I second what Gus said. So sorry for what you are living through and sending my best coping vibes your way. Glad you can find some peace hanging with Heather's Herd.
Virtu as 'Arete (Greek: ἀρετή) is a concept in ancient Greek thought that, in its most basic sense, refers to "excellence" of any kind. The term may also mean "moral virtue", just to be clear about you, TC.
Hi Gus. You are absolutely right. There are medical conditions as bad as ALS, they can last much longer and wreak even more havoc along the way on the families, as well as those with the disease. I have two friends who live with MS (they have the treatable kind, not the progressive kind) and I know how hard their lives are, not the least of which is figuring out how to pay out $1200 a month or more for medications that make their lives easier and better. Big Pharma's focus on profits is beyond my ability to be reasonable about so I won't go down that rabbit hole for now.
As to your point about a government program focused on neurological conditions like ALS/MS, there is one. Run by the Veteran's Administration, they are focused on determining why upwards of 20% of all people diagnosed with ALS in any one year, are current or former military. When my husband was alive, he was treated at the VA, given experimental treatments designed to delay the onset of symptoms (they worked), and the VA also has a program conducting research on the brains and spines of those willing to will their bodies to science. Glen donated his body to in the hopes that one day, ALS and other neurological conditions like Fronto Temporal Degenerative Disorder (FTD), a form of dementia that accompanies ALS about 25% of the time, can be treated, even cured. I also have hope for the stem cell neurological research being conducted in Israel right now. They are making great strides there.
It isn't the Warp Speed program, but there is high level research being done on the brain. And if we could just get a few Republicans to admit that medical science matters, maybe we could get there before thousands more die a slow, painful suffering death. My deepest condolences to you, Gus, on the loss of your wife.
Coming from you Sheila that means a lot. I didn't mention stem cells and the VA, but they both at the front of my mind as I wrote. It's a shame that we can't go full bore stem cell here. Mrna is going to help in the future as well. My hopes are high for others who may be spared.
Edie changed over to secondary progressive. Stopped the interferon shots I was giving her every day, ineffective against SP MS. She developed leukemia.
Thank you David, and my best wishes to you and your family. When Edie was diagnosed, the Dr. told us, “It’s a devil disease. No known cause, no known treatment, no known cure.” This was right after the MRI came into general use in some hospitals, which was the only way to positively diagnose it. Prior to that, they relied on a collection of symptoms and eliminating other possible diseases. Hell of a way to start out, but we managed, and they have made very significant progress since then.
My mother was officially diagnosed with the MRI when she was 47, but I suspect she always knew what it was because her mother had had it beginning somewhere in the 1920s. My parents have been gone for around two decades, but I wish the docs had known about the vitamin D and several other things that could have made their lives easier.
Sheila, thank you for sharing this with us. It gives me hope for lost friendships with many of my white evangelical friends during the last administration, especially during the racial protest and riots. My heart hurts for your loss of your husband.
Gus, I second everything you shared. My husband of four years was newly diagnosed w/MS when we met 5 years ago, and I was JUST diagnosed last year in March. I asked the neurologist at my clinical exam/initiation appointment after my MRI that showed scars in my brain, "Dr., are you ABSOLUTELY sure MS isn't contagious?" :-)
MS doesn't always take the mind. My mother had hers until the end, even though she could hardly do anything with her body.
Not known in my mother's day, but large doses of vitamin D does wonders for a lot of people with MS. Get yourself and your husband docs that know about this. We're talking doses of ***at least*** 10,000 IU/day, which is not unsafe. But part of what you need to know is that physicians of a certain age learned in medical school tht it is VERY easy to get a toxic dose (not true). My own physician was appalled tht I was taking 3000 IU/day (for general health, not MS, and since I started that in '04 I almost never get colds or flu). But she has come around. Here is what a friend of mine with MS wrote about D's impact on her life.
From one of my friends, her experience with her MS after taking Vit D. --David
David, you might find it interesting to know that when I was really struggling, even after they switched me from Cytoxan to Novantrone, my neurologist started me on 10,000 IU of D3 daily and then upped it to 20,000 units daily after some of these studies came to light. The blast of D3 made a dramatic difference and put me into remission. At the time, I had been reclassified as progressive, non-remitting and had had no improvement in over 3 years - just a steady decline. I've been doing well ever since.
They dropped me back to 10,000 units daily after a year at the higher dose but a recent level shows me to be just over 100 ng/ml so the've stopped it for a couple of months to get my level just under 100 ng/ml. They want to keep it at the high end of normal but under 100 ng/ml, as that is where I seem to do the best. My guess is that they will resume it at 5,000 IU daily or every other day next month after they do the repeat labs.
In my case, since I lather with a 50 SPF or higher sunblock and wear an SPF rated hat in the garden, I probably get little effect from the sun.
There is no question it has a profound impact on MS and I have benefited greatly from this inexpensive, benign therapy.... quite a switch after too many years of high dose chemo.
And please add the caveat that no one should ingest such high doses of Vitamin D unless they are under a doctor's care and their Vitamin D levels and liver function studies are being closely monitored on a regular basis, as Vitamin D is a fat soluble compound that is stored in the liver. Mine are checked every other month at this point.
It's absolutely critical to know the person's baseline level before treatment is started. Because I develop a rash when I'm in the sun, I have always used strong sun blocks and SPF rated clothing (especially a hat) when out of doors. I don't have any other reliable source of vitamin D in my diet as I have been tube fed for years, so my levels were particularly low. Everyone absorbs nutrients differently and my GI issues certainly affected mine. The fact that I had a very low level to start with definitely affected the amount and duration of my treatment.
All of those dire warnings aside, in this case and in many others that I have seen reported, Vitamin D can make a significant difference for people with aggressive forms of this disease. I was into my 4th year of high dose chemotherapy when they first added the Vitamin D. The change was measurable and even more-so when he increased the dose, which he did several months after I finished the chemo protocol (purely coincidental - he was reading a study in which the 20,000 IU dose was cited just prior to one of my post chemo check-ups.)
The change in my symptoms and level of function improved so much after he started me on the higher dose, after a year or so he reclassified my disease back from secondary progressive, non-remitting to relapsing remitting. I have been completely stable now since 2007 - 5 years. This year, Steve and I started vintage dancing. Not bad, considering I was in a wheelchair with a ventilator in 2006.
A couple of years later, she writes:
You should know that my Vitamin D level rose to a level that my PCP thought was unsafe (just over the upper limit of normal at 107) so he took me off it (temporarily). Six weeks later, I started having major symptoms and my repeat Vitamin D was down to 19. I'm back on 10,000 units a day but I am also back on a ventilator and my return to the symphony as a harpist has also been delayed. ;(
I think it's important to note that most physicians - especially PCP's - have the idea that D levels change slowly over time and that is not the case. My level went from 107 to 19 in just over a month. That is scary. I should also note that while I have not noticed much improvement since we restarted the D, the downward slide has leveled off. They are going to recheck my levels on Monday. I do best when it is between 90-100.
David, It was very wise of you to provide all this information. I hope that JetFaith shows it to her and her husband's doc. That will give them something to work with and might want to contact your friend's doctor if all parties are open to it. Thank for your thoughtful generosity. Salud!
My friend, alas, died of cancer a couple of years ago, and I have no idea who her doctor was. But I've heard of others doing the same thing, and I suspect it's fairly well known among younger docs. If I had MS I'd kick my dose up to 10,000, give it a few months, and kick it up again if that wasn't working. (When you start on D, it takes at least a month and a half to two months to get to the blood level that the dose will maintain. An alternative is to take a very large dose (like 20,000 IU for several weeks and then go back down to 10,000).
Yes, Vit. D was one of the very first of many scripts my neurologist prescribed me since my diagnosis in March 2021.
Last week, I was diagnosed with small fiber neuropathy after a skin biopsy the previous week. I’d been suffering with “burning” feet, ankles, palms, fingertips, arms and legs. Just the touch of a sheet or pants causes pain.
The doc wants to reevaluate my Vit D mg amount along with other nutrients/vitamins like Vit B 12.
There is quite a bit of overlap with MS and neuropathy. What has been your friend’s experience with neuropathy?
My friend never mentioned neuropathy, and neither did my mother.
I've written about neuropathy some in past years, and my impression is there's a fair amount docs can do for it. Email me at supernova1@aol.com, if you want to ask me more about it, and I know people who might know if there are good docs for neuropathy in your area.
JetFaith, just wanted to say how sorry I am to read about your husband and now you, developing MS. Can't imagine how scary that must be. My best to you both; it will be a painful journey at times, but traveling together is better. As for your white Evangelical friends, I have no clue how to reach folks like that anymore. I'm a Catholic, my friend Chris is Jewish, Kathy is also Catholic, the other two members of our little group include one Lutheran and one Methodist. We can talk about, joke about and generally say anything about one another's religious traditions. Doesn't faze any of us. We all celebrate ChristmaHannaKwanzika. (Another words, exchange secret Santa gifts). As for the race riots, my stepdaughter, who is Korean-American, lives a block and a half away from the corner where George Floyd was murdered. Racism is alive and well in the city of my birth but Emkae's generation gives me hope. Sending hope your way too.
Sheila, your post is so encouraging. After such a terrible loss (my sincere condolences go to you and your daughters....and I just attended a funeral Mass for a friend whose husband died of ALS), you are like a Phoenix. Bravo. I also am aware of the myriad things you do to promote and save this democracy. Thank you.
I love this story, and I hope the joy of shared laughter brings you euphoria going forward. Groups like Red Wine & Blue leverage what we do with our little groups of five (or 20) friends. You’re doing your part. And I am so sorry for your loss.
Thank you for this! This brought a much needed smile and feeling of hope. Where there is one group of friends that have opened that closed door to politics, there’s sure to be many many more.
Sheila, thank you for this. Rekindled friendship is doubly heartwarming. I also give you my deep and heartfelt condolences on your loss. I’ve also walked this road, rocky but navigable. God bless you.
Sheila, thank you for sharing. It’s heartening to know people can change, even after years of believing the stories they’ve known were “absolute truths” most likely from their childhood. I too send condolences to you for your loss. And hope.
This gives me hope that someday I can reconnect with those I had to distance from for my own well being. My disappointment in their refusal to accept reality may never go away. I too am grateful for this “island of sanity.”
Stanley, watch the polls concerning suburban Republican-leaning women. My friends may well be anomalies - but polls have been identifying suburban Repub women as a key demographic for a long time.
I joined the LWV a few weeks ago and am impressed with their level of individual expertise and commitment. Since the organization is bipartisan, I figure we have a foot in the door to reach, and potentially influence, suburban republican women voters. About 100, mostly women in two counties south of Denver, are involved in voter registration drives ( including registering newly naturalized citizens on a weekly basis), advocacy, member education, lobbying at the state level, civics programs in local schools. The list goes on. Their mission statement: Empowering Voters, Defending Democracy!
Sounds good! Here in Seattle, when LaBump stole the election (it was rigged for him to win) The League of Women Voters had to close their office because of bomb threats ... pretty sure they are back in action now ... I hardly have wherewithal just to get through the day/night one day at a time, so haven't much to offer there, but am great-full for their sincerity and works.
I’m a lifelong environmental activist, Kathleen. I persist with former employers, postcards to voters, postcards to potential voters to get them to register in time via Field Team 6, am trying to find a safe way to help register Democrats in neighboring Wisconsin in person (Ron Johnson is vulnerable- would be great to help knock him off), worked with my neighbors to get them to vote in last year’s school board elections, and still work part time. LWV does great work but my time is already committed elsewhere.
Likewise Sheila, Just participating on this blog takes more time than I have to commit - while I admire and appreciate the efforts of those who are able to contribute actively, I already am sleep deprived and coping with the consequences ... I heard that angels don't have to sleep - is this what it takes to earn those wings ...?
On Wednesday evenings, for most of the last 15 years, i have gotten together with a group of creative women to chat and craft. Some knit, some crochet, some simply come for the conversation and yes, wine.
In 2020, I dropped out. My husband had been diagnosed with ALS, I couldn’t leave him alone and it was rare that my girls could come over midweek. I mostly dropped out though because the “founder” of the group kept chastising me for talking politics. Since its damn near impossible for me to NOT do that, it was just easier to leave. After Glen died, I was invited to return via Zoom and did so but mostly kept my mouth shut about anything other than which yarn was better for socks (wool. Definitely wool and preferably hand-painted.)
We meet in person again but the group has dropped from a high of 20+ to just five. Three of the five used to call themselves Republicans. The fourth is a moderate Democrat. Then there’s me- the lefty, liberal outlier.
Last night, the only thing we talked about was politics. Our host, who has earned her millions, was furious about everything- supply chain problems, anti mask/ anti vaxxers keeping her family on edge and fraying her nerves with worry, and the; “lying, cheating, adulterous former President and his minions threatening both our democracy and my ability to conduct business” - Kathy’s words.
She had nothing but praise for the job Biden was doing- which was high praise indeed!
The group founder, Chris, chimed in on praising Biden and castigating the bejesus out of Republicans, specifically in this case Rubio, for his BS lies about harm reduction programming. (Chris’s son, now 10 years sober, is a graduate of such a program.) After praising the Dems and condemning Repubs in general, Chris turned to me and started laughing. Then I started laughing. Then, the uncontrolled near hysterical group laughter took over. Oh, sweet irony…..the Repub group leader broke her own rule and talked smack about politics! About damn time.
When I read HCR’s letter this morning, I felt the all-too-familiar pinch of anger, anxiety and repulsion for the lies, the violence, the dangerous and deadly denial people like Navarro and Gosar live in, and the vast wide conspiracy to destroy democracy in this country. I do my little part to promote and protect democracy but as others here have often noted, I just wish there was more I could do to change this dangerous trajectory we are on.
I’m grateful, every day, for LFAA and this island of sanity with all of you. Now that there are two such islands in my life, I can go island hopping (I’m dreaming of warmer climes. We have snow coming later today. Ugh….)
Thanks for this Your friends' "conversion" gives me hope. I'm glad you're getting your group back, and condolences on the loss of your husband. ALS is a freaking thief; takes the body as Alzheimer's takes the mind.
Hi Ally, I am not one-upping ALS at all — it is a nightmare all by itself, but MS takes both body and mind, and it is typically much, much slower.
The only good thing the sociopath in chief ever did for this country (only because Covid was destabilizing his precious stock market) was the warp speed vaxx program. How I long for such a program for neurological diseases, including spinal cord injuries. Such a program would — as with Covid — mandate sharing information among and between Pharma and universities, all of which presently guard their research from one another, incentivized by patents, grants, publishing rights, and profits. Without such cooperation we may continue to have what we have now: advances in treating symptoms and complications but but little hope for finding a causes and cures.
It is too late for my wife, but not for generations of human beings yet to be. My condolences to Sheila and her family as well.
As long as you want to list awful endings, add in Parkinson's. Watching a partner who was "scalpel sharp" become a "butter knife" who can't remember what the butter knife's for is damn hard.
TC, Parkinson’s is another default neurological disease that there are no words to describe. No doubt in my mind that you are doing everything that can be done for your partner, and I, as the former partner of someone who’s attributes would exceed substack’s storage capacity and crash this whole website, for 50 years and 15 days, I understand you, and honor you.
I used to tell Edie that I had MS too, because she had it, and she was me and I was her. It helped her understand, and sometimes even mitigated her extreme feelings of guilt that she had failed me and our daughter. And I meant what I said to her.
What was not said out loud is that, sometimes, in our weaker moments it is actually harder on the caregiver because we have to watch, despite all of our efforts, we must watch the person we love more than life — the creature who is our reason for existing, go through an indescribable disease. That’s all I can say about that right now, my eyes are sweating pretty hard.
So to you TC, and to loving caregivers everywhere, it IS “damn hard.” It is what love is all about. May that love give you strength, even when it’s over, and they take the best part of you with them.
Thanks much for that, Gus.
I second what Gus said. So sorry for what you are living through and sending my best coping vibes your way. Glad you can find some peace hanging with Heather's Herd.
TC's virtu.
Virtu as 'Arete (Greek: ἀρετή) is a concept in ancient Greek thought that, in its most basic sense, refers to "excellence" of any kind. The term may also mean "moral virtue", just to be clear about you, TC.
Another Official Compliment from Fern! What is it I'm doing? :-)
I haven't become soft, TC. It is about you, perhaps, a matter of respect and care, so there.
I shall endeavor to keep up those high standards. You're a "tough audience" so getting a compliment there Means Something.
Watched that with my b-I-L ‘s Dad. I can only imagine how hard that is. ❤️
Hi Gus. You are absolutely right. There are medical conditions as bad as ALS, they can last much longer and wreak even more havoc along the way on the families, as well as those with the disease. I have two friends who live with MS (they have the treatable kind, not the progressive kind) and I know how hard their lives are, not the least of which is figuring out how to pay out $1200 a month or more for medications that make their lives easier and better. Big Pharma's focus on profits is beyond my ability to be reasonable about so I won't go down that rabbit hole for now.
As to your point about a government program focused on neurological conditions like ALS/MS, there is one. Run by the Veteran's Administration, they are focused on determining why upwards of 20% of all people diagnosed with ALS in any one year, are current or former military. When my husband was alive, he was treated at the VA, given experimental treatments designed to delay the onset of symptoms (they worked), and the VA also has a program conducting research on the brains and spines of those willing to will their bodies to science. Glen donated his body to in the hopes that one day, ALS and other neurological conditions like Fronto Temporal Degenerative Disorder (FTD), a form of dementia that accompanies ALS about 25% of the time, can be treated, even cured. I also have hope for the stem cell neurological research being conducted in Israel right now. They are making great strides there.
It isn't the Warp Speed program, but there is high level research being done on the brain. And if we could just get a few Republicans to admit that medical science matters, maybe we could get there before thousands more die a slow, painful suffering death. My deepest condolences to you, Gus, on the loss of your wife.
Coming from you Sheila that means a lot. I didn't mention stem cells and the VA, but they both at the front of my mind as I wrote. It's a shame that we can't go full bore stem cell here. Mrna is going to help in the future as well. My hopes are high for others who may be spared.
Progressive MS is treatable. See my loooong comment a little above yours, on vitamin D, and there are other treatments as well.
I'm sorry to learn your husband died, and of ALS, which must have been painful to watch.
Edie changed over to secondary progressive. Stopped the interferon shots I was giving her every day, ineffective against SP MS. She developed leukemia.
I'm so sorry to hear that Gus. I know from watching my parents, how hard it is to have a spouse with major medical problems (MS in my mother's case).
Thank you David, and my best wishes to you and your family. When Edie was diagnosed, the Dr. told us, “It’s a devil disease. No known cause, no known treatment, no known cure.” This was right after the MRI came into general use in some hospitals, which was the only way to positively diagnose it. Prior to that, they relied on a collection of symptoms and eliminating other possible diseases. Hell of a way to start out, but we managed, and they have made very significant progress since then.
My mother was officially diagnosed with the MRI when she was 47, but I suspect she always knew what it was because her mother had had it beginning somewhere in the 1920s. My parents have been gone for around two decades, but I wish the docs had known about the vitamin D and several other things that could have made their lives easier.
Sheila, thank you for sharing this with us. It gives me hope for lost friendships with many of my white evangelical friends during the last administration, especially during the racial protest and riots. My heart hurts for your loss of your husband.
Gus, I second everything you shared. My husband of four years was newly diagnosed w/MS when we met 5 years ago, and I was JUST diagnosed last year in March. I asked the neurologist at my clinical exam/initiation appointment after my MRI that showed scars in my brain, "Dr., are you ABSOLUTELY sure MS isn't contagious?" :-)
MS doesn't always take the mind. My mother had hers until the end, even though she could hardly do anything with her body.
Not known in my mother's day, but large doses of vitamin D does wonders for a lot of people with MS. Get yourself and your husband docs that know about this. We're talking doses of ***at least*** 10,000 IU/day, which is not unsafe. But part of what you need to know is that physicians of a certain age learned in medical school tht it is VERY easy to get a toxic dose (not true). My own physician was appalled tht I was taking 3000 IU/day (for general health, not MS, and since I started that in '04 I almost never get colds or flu). But she has come around. Here is what a friend of mine with MS wrote about D's impact on her life.
From one of my friends, her experience with her MS after taking Vit D. --David
David, you might find it interesting to know that when I was really struggling, even after they switched me from Cytoxan to Novantrone, my neurologist started me on 10,000 IU of D3 daily and then upped it to 20,000 units daily after some of these studies came to light. The blast of D3 made a dramatic difference and put me into remission. At the time, I had been reclassified as progressive, non-remitting and had had no improvement in over 3 years - just a steady decline. I've been doing well ever since.
They dropped me back to 10,000 units daily after a year at the higher dose but a recent level shows me to be just over 100 ng/ml so the've stopped it for a couple of months to get my level just under 100 ng/ml. They want to keep it at the high end of normal but under 100 ng/ml, as that is where I seem to do the best. My guess is that they will resume it at 5,000 IU daily or every other day next month after they do the repeat labs.
In my case, since I lather with a 50 SPF or higher sunblock and wear an SPF rated hat in the garden, I probably get little effect from the sun.
There is no question it has a profound impact on MS and I have benefited greatly from this inexpensive, benign therapy.... quite a switch after too many years of high dose chemo.
And please add the caveat that no one should ingest such high doses of Vitamin D unless they are under a doctor's care and their Vitamin D levels and liver function studies are being closely monitored on a regular basis, as Vitamin D is a fat soluble compound that is stored in the liver. Mine are checked every other month at this point.
It's absolutely critical to know the person's baseline level before treatment is started. Because I develop a rash when I'm in the sun, I have always used strong sun blocks and SPF rated clothing (especially a hat) when out of doors. I don't have any other reliable source of vitamin D in my diet as I have been tube fed for years, so my levels were particularly low. Everyone absorbs nutrients differently and my GI issues certainly affected mine. The fact that I had a very low level to start with definitely affected the amount and duration of my treatment.
All of those dire warnings aside, in this case and in many others that I have seen reported, Vitamin D can make a significant difference for people with aggressive forms of this disease. I was into my 4th year of high dose chemotherapy when they first added the Vitamin D. The change was measurable and even more-so when he increased the dose, which he did several months after I finished the chemo protocol (purely coincidental - he was reading a study in which the 20,000 IU dose was cited just prior to one of my post chemo check-ups.)
The change in my symptoms and level of function improved so much after he started me on the higher dose, after a year or so he reclassified my disease back from secondary progressive, non-remitting to relapsing remitting. I have been completely stable now since 2007 - 5 years. This year, Steve and I started vintage dancing. Not bad, considering I was in a wheelchair with a ventilator in 2006.
A couple of years later, she writes:
You should know that my Vitamin D level rose to a level that my PCP thought was unsafe (just over the upper limit of normal at 107) so he took me off it (temporarily). Six weeks later, I started having major symptoms and my repeat Vitamin D was down to 19. I'm back on 10,000 units a day but I am also back on a ventilator and my return to the symphony as a harpist has also been delayed. ;(
I think it's important to note that most physicians - especially PCP's - have the idea that D levels change slowly over time and that is not the case. My level went from 107 to 19 in just over a month. That is scary. I should also note that while I have not noticed much improvement since we restarted the D, the downward slide has leveled off. They are going to recheck my levels on Monday. I do best when it is between 90-100.
David, It was very wise of you to provide all this information. I hope that JetFaith shows it to her and her husband's doc. That will give them something to work with and might want to contact your friend's doctor if all parties are open to it. Thank for your thoughtful generosity. Salud!
My friend, alas, died of cancer a couple of years ago, and I have no idea who her doctor was. But I've heard of others doing the same thing, and I suspect it's fairly well known among younger docs. If I had MS I'd kick my dose up to 10,000, give it a few months, and kick it up again if that wasn't working. (When you start on D, it takes at least a month and a half to two months to get to the blood level that the dose will maintain. An alternative is to take a very large dose (like 20,000 IU for several weeks and then go back down to 10,000).
It was sad to learn of your friend's death. Take care.
Thank you Fern
A very belated thank you, David.
Yes, Vit. D was one of the very first of many scripts my neurologist prescribed me since my diagnosis in March 2021.
Last week, I was diagnosed with small fiber neuropathy after a skin biopsy the previous week. I’d been suffering with “burning” feet, ankles, palms, fingertips, arms and legs. Just the touch of a sheet or pants causes pain.
The doc wants to reevaluate my Vit D mg amount along with other nutrients/vitamins like Vit B 12.
There is quite a bit of overlap with MS and neuropathy. What has been your friend’s experience with neuropathy?
My friend never mentioned neuropathy, and neither did my mother.
I've written about neuropathy some in past years, and my impression is there's a fair amount docs can do for it. Email me at supernova1@aol.com, if you want to ask me more about it, and I know people who might know if there are good docs for neuropathy in your area.
JetFaith, just wanted to say how sorry I am to read about your husband and now you, developing MS. Can't imagine how scary that must be. My best to you both; it will be a painful journey at times, but traveling together is better. As for your white Evangelical friends, I have no clue how to reach folks like that anymore. I'm a Catholic, my friend Chris is Jewish, Kathy is also Catholic, the other two members of our little group include one Lutheran and one Methodist. We can talk about, joke about and generally say anything about one another's religious traditions. Doesn't faze any of us. We all celebrate ChristmaHannaKwanzika. (Another words, exchange secret Santa gifts). As for the race riots, my stepdaughter, who is Korean-American, lives a block and a half away from the corner where George Floyd was murdered. Racism is alive and well in the city of my birth but Emkae's generation gives me hope. Sending hope your way too.
To JetFaith 🪴with loving spirit.
❤️❤️❤️❤️❤️
Sheila, You served us the most glorious laughter and you gave us pictures of you of us of struggle of determination and love. Thank you.
Sheila, your post is so encouraging. After such a terrible loss (my sincere condolences go to you and your daughters....and I just attended a funeral Mass for a friend whose husband died of ALS), you are like a Phoenix. Bravo. I also am aware of the myriad things you do to promote and save this democracy. Thank you.
Many thanks Annette. I will add your friend to the prayers list. ALS is beyond tough….
I love this story, and I hope the joy of shared laughter brings you euphoria going forward. Groups like Red Wine & Blue leverage what we do with our little groups of five (or 20) friends. You’re doing your part. And I am so sorry for your loss.
Thank you for this! This brought a much needed smile and feeling of hope. Where there is one group of friends that have opened that closed door to politics, there’s sure to be many many more.
Sheila, thank you for this. Rekindled friendship is doubly heartwarming. I also give you my deep and heartfelt condolences on your loss. I’ve also walked this road, rocky but navigable. God bless you.
I’m so sorry that you have shared that road. As you say-rocky but navigable. But tough, nonetheless. Blessings you you too.
Sheila, thank you for sharing. It’s heartening to know people can change, even after years of believing the stories they’ve known were “absolute truths” most likely from their childhood. I too send condolences to you for your loss. And hope.
Sheila B, thanks so much for this very good yarn!
🤣
This gives me hope that someday I can reconnect with those I had to distance from for my own well being. My disappointment in their refusal to accept reality may never go away. I too am grateful for this “island of sanity.”
I hope this is a predictor of 2022 election results!
Stanley, watch the polls concerning suburban Republican-leaning women. My friends may well be anomalies - but polls have been identifying suburban Repub women as a key demographic for a long time.
❤️🪴
Sheila, I hope so, but until we cross the finish line, I can’t relax.
Very interesting ... is it time to connect with LWV ... or is it better to persist unaffiliated with any official organization ...?
Persist in every way possible, including the League of Women Voters.
I joined the LWV a few weeks ago and am impressed with their level of individual expertise and commitment. Since the organization is bipartisan, I figure we have a foot in the door to reach, and potentially influence, suburban republican women voters. About 100, mostly women in two counties south of Denver, are involved in voter registration drives ( including registering newly naturalized citizens on a weekly basis), advocacy, member education, lobbying at the state level, civics programs in local schools. The list goes on. Their mission statement: Empowering Voters, Defending Democracy!
Sounds good! Here in Seattle, when LaBump stole the election (it was rigged for him to win) The League of Women Voters had to close their office because of bomb threats ... pretty sure they are back in action now ... I hardly have wherewithal just to get through the day/night one day at a time, so haven't much to offer there, but am great-full for their sincerity and works.
I’m a lifelong environmental activist, Kathleen. I persist with former employers, postcards to voters, postcards to potential voters to get them to register in time via Field Team 6, am trying to find a safe way to help register Democrats in neighboring Wisconsin in person (Ron Johnson is vulnerable- would be great to help knock him off), worked with my neighbors to get them to vote in last year’s school board elections, and still work part time. LWV does great work but my time is already committed elsewhere.
Likewise Sheila, Just participating on this blog takes more time than I have to commit - while I admire and appreciate the efforts of those who are able to contribute actively, I already am sleep deprived and coping with the consequences ... I heard that angels don't have to sleep - is this what it takes to earn those wings ...?