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well this is an interesting find. Alpha Lipoic Acid slows brain tissue loss and can speed up walking speeds. @pop22 thought you might find this interesting..?

https://multiplesclerosisnewstoday....t-lipoic-acid-may-slow-spms-neurodegeneration

A pilot study exploring the antioxidant lipoic acid in patients with secondary progressive multiple sclerosis (SPMS) demonstrated that treatment for two years reduced the speed of brain tissue loss and improved the patients’ walking speed.

The surprising finding was presented during the “New directions in progressive MS research” session of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) 2016 Congress Sept. 14-17 in London.

In her talk, titled “Lipoic acid for neuroprotection in secondary progressive multiple sclerosis: results of a randomised placebo-controlled pilot trial,” Dr. Rebecca Spain, MD, MSPH, a neurologist in the Oregon Health & Science University Multiple Sclerosis Center, also working with the VA Portland Health Care System, explained how her research team became interested in the over-the-counter antioxidant.

Lipoic acid has been shown to reduce inflammation and degeneration of the optic nerve and spinal cord tissue in animal models of MS. The compound is also suitable for patients, as studies have shown that even high doses of the antioxidant are well-tolerated.

Spain and her team designed a clinical trial where patients were randomized to receive either 1,200 mg of lipoic acid or a placebo for 96 weeks. The main goal of the study was to reduce whole brain tissue loss, but researchers also measured neurodegeneration in the spinal cord and eye. The team also assessed neurological functions, cognition, walking, fatigue, and quality of life.

The study enrolled 51 patients, of whom 27 received lipoic acid and 24 a placebo. Patients in the study were, on average, 58.5 years old, and had an average Expanded Disability Status Scale (EDSS) score of 6.

Five participants in the lipoic acid group, equaling 9.8 percent, quit the study early, but the remaining patients took about 80 percent of their daily lipoic acid doses.

Researchers found that the annualized rate of whole brain tissue loss was significantly lower in patients receiving lipoic acid. After two years, treated patients had lost about 0.4 percent of their total brain volume, while those in the control group lost 1.3 percent during the same time. Those receiving lipoic acid were also found to walk faster.

The treatment did not increase the occurrence of adverse events, but researchers noted that lipoic acid was linked to more stomach problems. Those receiving a placebo, however, fell more often.

“If these findings bear out, it provides hope for a relatively inexpensive treatment where few currently exist for people living with longstanding progressive multiple sclerosis,” Spain told Multiple Sclerosis News Today.

“The slowing of whole brain atrophy was remarkable. We can use this pilot study as the basis for designing a multisite clinical trial, which will help us answer questions about how lipoic acid works and whether it can indeed improve clinical outcomes for people,” she said.
 
VERY Interesting, thank you!

Eyes on Fire said:
well this is an interesting find. Alpha Lipoic Acid slows brain tissue loss and can speed up walking speeds. @pop22 thought you might find this interesting..?

https://multiplesclerosisnewstoday....t-lipoic-acid-may-slow-spms-neurodegeneration

A pilot study exploring the antioxidant lipoic acid in patients with secondary progressive multiple sclerosis (SPMS) demonstrated that treatment for two years reduced the speed of brain tissue loss and improved the patients’ walking speed.

The surprising finding was presented during the “New directions in progressive MS research” session of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) 2016 Congress Sept. 14-17 in London.

In her talk, titled “Lipoic acid for neuroprotection in secondary progressive multiple sclerosis: results of a randomised placebo-controlled pilot trial,” Dr. Rebecca Spain, MD, MSPH, a neurologist in the Oregon Health & Science University Multiple Sclerosis Center, also working with the VA Portland Health Care System, explained how her research team became interested in the over-the-counter antioxidant.

Lipoic acid has been shown to reduce inflammation and degeneration of the optic nerve and spinal cord tissue in animal models of MS. The compound is also suitable for patients, as studies have shown that even high doses of the antioxidant are well-tolerated.

Spain and her team designed a clinical trial where patients were randomized to receive either 1,200 mg of lipoic acid or a placebo for 96 weeks. The main goal of the study was to reduce whole brain tissue loss, but researchers also measured neurodegeneration in the spinal cord and eye. The team also assessed neurological functions, cognition, walking, fatigue, and quality of life.

The study enrolled 51 patients, of whom 27 received lipoic acid and 24 a placebo. Patients in the study were, on average, 58.5 years old, and had an average Expanded Disability Status Scale (EDSS) score of 6.

Five participants in the lipoic acid group, equaling 9.8 percent, quit the study early, but the remaining patients took about 80 percent of their daily lipoic acid doses.

Researchers found that the annualized rate of whole brain tissue loss was significantly lower in patients receiving lipoic acid. After two years, treated patients had lost about 0.4 percent of their total brain volume, while those in the control group lost 1.3 percent during the same time. Those receiving lipoic acid were also found to walk faster.

The treatment did not increase the occurrence of adverse events, but researchers noted that lipoic acid was linked to more stomach problems. Those receiving a placebo, however, fell more often.

“If these findings bear out, it provides hope for a relatively inexpensive treatment where few currently exist for people living with longstanding progressive multiple sclerosis,” Spain told Multiple Sclerosis News Today.

“The slowing of whole brain atrophy was remarkable. We can use this pilot study as the basis for designing a multisite clinical trial, which will help us answer questions about how lipoic acid works and whether it can indeed improve clinical outcomes for people,” she said.
Click to expand...
 
Living with a chronic illness like Multiple Sclerosis involves adapting to a new way of life. While some people like to say that MS “doesn’t have them”, I freely admit that it’s part of me. That doesn’t mean it runs my life, it simply means that I’ve adapted the way I do some things. With that in mind, I thought I’d take a look at some of the (sometimes weird) life hacks that I’ve adopted because of MS. These are small things I do on a daily basis that make my life with MS go a little smoother. Things that are routine to me, but still a little off-centered enough that I get asked about them.

The Beard
Apparently one of the first things people notice about me is my beard. I’ve been growing it for a couple of years now and it’s started to get to a nice size. I’ve noticed that beards have been trendy lately, but that’s not at all why I grew one. I’m far from a hipster, the reason I grew one is because of MS. Spasms and tremors in my hands are a big reason. I admit it, I’m a pretty hairy guy, so to keep clean shaven, I’d have to shave every day. Shaving was starting to become a pretty bloody affair because I’d get sudden spasms in my arms or tremors in my hands every time I tried to shave. My hairiness always seemed too much for even a very good electric shaver to tame, so here I am with a beard. Even aside from all the cuts, I feel I can make better use of that time and energy on something else. Sure, shaving may seem like a minor task to many, but when you have a chronic illness, as the “spoon theory” says, everything adds up.

I grew up playing hockey and remain a fan of it to this day. You’ve maybe heard of the concept of a “playoff beard”, where players start growing a beard at the beginning of the playoffs and don’t shave until they have won the championship or have been eliminated. I started growing mine around the time I got pushed onto disability, when things really took a rough turn because of MS. Losing my career to MS was a pretty big deal and I do very much look at this as the playoffs of my life. Being on disability, fighting my disease on a daily basis, it’s easy to look at it like that. This is when I need to be at my best and “play” my hardest. Seeing that beard every day is a nice reminder that I’m “still in it”, I’m not eliminated yet. It may seem silly, but small motivators like that can be pretty helpful.

The Sharpie
If you see me wearing short sleeves, from a distance, you might think I’m sporting a few tattoos. Upon closer inspection, you’ll see that I’ve actually just written on myself with a sharpie. Sometimes a lot too. Some of my symptoms are related to cognitive changes, memory being a big problem area for me. One way I try to combat those memory issues is by writing notes to myself. I use an app on my phone for some things, but many times, particularly for short term items, I write on my arms so I will see it and remember it. I know enough to check my arms when I am forgetting something. It’s odd, it may not look great, but it’s extremely helpful to me. And contrary to what many think, sharpie does come off of skin easily.

Dogs
I grew up with dogs, lots of dogs. They’ve always been an important part of my life and now is no different. I’ve spoken before about how my pups have been enormously important to me since I’ve been on disability. The types of dogs I’ve had recently have had to change though. I have two bigger guys (Murdock and Dexter), but because of their size and need for exercise they have to live with my parents. My legs just can’t handle the longer walks they require. It’s ok though, they have a blast at my parents’ place (they have a massive yard and other dog friends there). In recent times, I have adopted smaller, older dogs. My first, Penny, who has sadly passed away, and now Ferdinand, move a bit slower and need a little less walking than the big guys. They both had/have assorted issues, just like I do. There are a lot of older dogs out there that maybe aren’t as spry as they once were, just like many of us with MS aren’t as spry as we once were. To me, that’s a perfect match. So please, always consider rescuing an older dog, you won’t be disappointed!

Toys!
Having MS can be pretty lonely, depressing even. Being on disability can make that loneliness and depression even greater. So many people think it’s great to not work, when that is far from the case. It sucks, it’s awful, and it’s boring too. You have to find something to occupy not only your time, but your mind. I found that I needed a release, something to quiet my thoughts at night. My body can’t go play hockey any more, so I needed something less active. Somehow that became toys, I’m not even sure how. I now collect toys (primarily action figures) and also sell them on eBay. It’s my hobby. I have an office (ok, toy room) in the house where I can go and just get away from everything that’s bothering me, I can focus on something other than whatever is going wrong with my body at that moment. It may sound weird, juvenile even (though I’ve learned there are a massive amount of adult collectors out there), but when you live a life in pain and you are isolated a lot, it’s nice to have a distraction. At the suggestion of one of my doctors, this hobby has grown to include the building of LEGOS/Mega Bloks. He suggested it as a therapy to help with both my cognitive issues and the numbness in my hands. It’s actually worked wonders (I’ll even work on a set before I start writing because it seems to get my mind ready). Bottom line, finding some kind of hobby or distraction is important, just remember that you may find one some place you wouldn’t normally look.

The Way I Dress!
Ok, this may not be so odd, but, because temperatures can be such a trigger for me (especially warm ones), I tend to wear shorts a lot. Like sometimes even in the winter. Those shorts are typically cargo shorts, and you know what? In the summer, there is a good chance I have some sort of cooling pack in the pockets to help me deal with the hot weather. I also get very particular about the material of shirts I wear. If I find something that feels ok and is thin and breathable enough, I’ll buy multiples of that shirt. It may look to some people like I wear the same shirt constantly, when in reality, I have several of it. Finally, I wear flip flops most of the time. My neurologist hates that I do that, because I do tend to fall a lot. Since I fall a lot no matter what kind of shoe I wear, I stick to my flops (again, even in the winter). My hands get numb, so putting on regular shoes can be tough, unless I get my wife’s help. So wearing flip flops is something that allows me to take care of myself a bit. Not having to rely on someone for even that small of a thing is pretty helpful for my mental state!

I feel like I have a lot more of these I could talk about, but for now, I’ll stop here. I’d love to know though, do you have any ways that you’ve adapted to your life with MS that may seem a little different to others? So please hit up the comments and let me know, I’m always looking for some tips! Thanks for reading!

Devin
 
The symptoms of MS – muscle weakness, tingling, muscle spasms, or vision difficulties – suddenly appear again: but is it a relapse or a pseudoexacerbation?

Pseudoexacerbation sounds like it’s a fake or made-up condition, but the symptoms are very real. Pseudoexacerbations of MS are a flare of symptoms that have been experienced before, and they usually only last about 24 hours.1 Unlike a relapse, pseudoexacerbations are not a worsening of the disease, and they are not related to new inflammation in the central nervous system.

In most people with MS, pseudoexacerbations are triggered by heat, such as a fever, hot bath, exercise, or spending too long in the sun. Increases in body temperature as little as a half a degree affect the nervous system, causing it to not work as efficiently and bringing up symptoms of an old inflammation. The symptoms from a pseudoexacerbation go away once the body temperature returns to normal.

Relapses are symptoms that are new or worsened symptoms that last for more than 24 hours. Relapses are also characterized by length of time – they do not occur within 30 days of a previous relapse. Also, the symptoms of a relapse cannot be explained by any other cause. In contrast, the symptoms experienced during a pseudoexacerbation may be explained by exposure to heat or an infection in the body.

What can cause a pseudoexacerbation?
Common causes of pseudoexacerbations include:

Fever due to a urinary tract infection (UTI) or sinus infection
Spending an excessive amount of time in the sun, such as at the beach or in the backyard
Vigorous exercise, especially combined with warm weather
Taking a hot bath or spending time in a hot tub
Some women find that hormonal changes, such as those that occur during the menstrual cycle, may set off a pseudoexacerbation. Rarely, people with MS are sensitive to cold temperatures, and for them, getting too cold can cause a flare of symptoms.

When a pseudoexacerbation happens, what should you do?
If you experience a flare of symptoms, take immediate action to care for yourself, getting as safe and comfortable as possible. If you’ve gotten overheated, move to a cooler environment, such as moving out of the sun and into an air-conditioned room. Drink cool water, and try to calm your mind and body with some slow, deep breaths. With pseudoexacerbations, symptoms go away within 24 hours.

If your symptoms last longer than 24 hours, contact your doctor. Depending on your overall health, your symptoms and how long they have lasted, your doctor may prescribe corticosteroids. However, corticosteroids do have risks associated with their use, including upper gastrointestinal bleeding, increasing the risk of osteoporosis, and possibly causing emotional changes, so doctors don’t always recommend them as a cure-all.

How can pseudoexacerbations be prevented?
While not all pseudoexacerbations can be avoided, there are several lifestyle practices that may reduce the chance of getting one, including:

Avoid overexertion, such as strenuous exercise or yard work, particularly during hot days
Limit exposure to hot environments, like saunas, hot tubs, or being outside during the hottest part of the day
Practice good hygiene (like frequently washing hands) and avoid others who are sick to reduce your risk of developing an infection


Multiple sclerosis is an incredibly complex condition, not only when it comes to the science behind it, but also what it means for living with it on a daily basis. We wanted to know more about life with MS, so we asked our amazing community members to share their experiences of what it is like living with this condition. For the 2017 MS In America survey, we gathered insights from 5,311 individuals who are currently living with MS. It is our goal to better understand the symptoms, management, and daily impact that MS has on those living with it, and also understand what it means for people who are caregivers living with MS.

Being mis-diagnosed is more common than you think
Many people are misdiagnosed with something else before they are finally diagnosed with MS. Some of our community members were diagnosed with conditions like depression, migraine, fibromyalgia, psychiatric disorder, B-12 deficiency, or chronic fatigue syndrome before receiving a diagnosis of MS.


MS is associated with SO MANY symptoms
Fatigue, numbness & tingling, and cognitive dysfunction are all well-known MS symptoms that are experienced by the majority of our community members, but the list of symptoms goes well beyond just those.


MS Pain is Real
More than half of our community members who experience symptoms said they experience some sort of pain associated with their MS, and MS pain can have a significant impact on so many aspects of daily life. Pain can impact your sleep, ability to walk, recreational activities, and mood.


Troubles with Treatment
While there are many more treatments available today than there were even 10 years ago, it is still challenging to find the right one for you. MS is different for everyone, so a treatment that works for one person may not work for another. Further, every treatment has risks in addition to benefits, so taking those into account can make it more complicated to make treatment-related decisions.


MS has a Real Impact on Daily Life
The impact that MS has on a person’s day-to-day is broad – it can impact your ability to sleep, work, and travel. MS also impacts overall quality of life, relationships, and even sexual function.


It’s Not Simple
Life with MS is anything but simple. We are so grateful to all of our community members who took the time to answer our questions and participate in the 2017 MS in America Survey. There’s only so much that can be learned about MS from a textbook, so hearing from real people who experience day-to-day life with MS is so important in bettering everyone’s understanding of what it means to live with MS.
 
Eyes on Fire said:
Living with a chronic illness like Multiple Sclerosis involves adapting to a new way of life. While some people like to say that MS “doesn’t have them”, I freely admit that it’s part of me. That doesn’t mean it runs my life, it simply means that I’ve adapted the way I do some things. With that in mind, I thought I’d take a look at some of the (sometimes weird) life hacks that I’ve adopted because of MS. These are small things I do on a daily basis that make my life with MS go a little smoother. Things that are routine to me, but still a little off-centered enough that I get asked about them.

The Beard
Apparently one of the first things people notice about me is my beard. I’ve been growing it for a couple of years now and it’s started to get to a nice size. I’ve noticed that beards have been trendy lately, but that’s not at all why I grew one. I’m far from a hipster, the reason I grew one is because of MS. Spasms and tremors in my hands are a big reason. I admit it, I’m a pretty hairy guy, so to keep clean shaven, I’d have to shave every day. Shaving was starting to become a pretty bloody affair because I’d get sudden spasms in my arms or tremors in my hands every time I tried to shave. My hairiness always seemed too much for even a very good electric shaver to tame, so here I am with a beard. Even aside from all the cuts, I feel I can make better use of that time and energy on something else. Sure, shaving may seem like a minor task to many, but when you have a chronic illness, as the “spoon theory” says, everything adds up.

I grew up playing hockey and remain a fan of it to this day. You’ve maybe heard of the concept of a “playoff beard”, where players start growing a beard at the beginning of the playoffs and don’t shave until they have won the championship or have been eliminated. I started growing mine around the time I got pushed onto disability, when things really took a rough turn because of MS. Losing my career to MS was a pretty big deal and I do very much look at this as the playoffs of my life. Being on disability, fighting my disease on a daily basis, it’s easy to look at it like that. This is when I need to be at my best and “play” my hardest. Seeing that beard every day is a nice reminder that I’m “still in it”, I’m not eliminated yet. It may seem silly, but small motivators like that can be pretty helpful.

The Sharpie
If you see me wearing short sleeves, from a distance, you might think I’m sporting a few tattoos. Upon closer inspection, you’ll see that I’ve actually just written on myself with a sharpie. Sometimes a lot too. Some of my symptoms are related to cognitive changes, memory being a big problem area for me. One way I try to combat those memory issues is by writing notes to myself. I use an app on my phone for some things, but many times, particularly for short term items, I write on my arms so I will see it and remember it. I know enough to check my arms when I am forgetting something. It’s odd, it may not look great, but it’s extremely helpful to me. And contrary to what many think, sharpie does come off of skin easily.

Dogs
I grew up with dogs, lots of dogs. They’ve always been an important part of my life and now is no different. I’ve spoken before about how my pups have been enormously important to me since I’ve been on disability. The types of dogs I’ve had recently have had to change though. I have two bigger guys (Murdock and Dexter), but because of their size and need for exercise they have to live with my parents. My legs just can’t handle the longer walks they require. It’s ok though, they have a blast at my parents’ place (they have a massive yard and other dog friends there). In recent times, I have adopted smaller, older dogs. My first, Penny, who has sadly passed away, and now Ferdinand, move a bit slower and need a little less walking than the big guys. They both had/have assorted issues, just like I do. There are a lot of older dogs out there that maybe aren’t as spry as they once were, just like many of us with MS aren’t as spry as we once were. To me, that’s a perfect match. So please, always consider rescuing an older dog, you won’t be disappointed!

Toys!
Having MS can be pretty lonely, depressing even. Being on disability can make that loneliness and depression even greater. So many people think it’s great to not work, when that is far from the case. It sucks, it’s awful, and it’s boring too. You have to find something to occupy not only your time, but your mind. I found that I needed a release, something to quiet my thoughts at night. My body can’t go play hockey any more, so I needed something less active. Somehow that became toys, I’m not even sure how. I now collect toys (primarily action figures) and also sell them on eBay. It’s my hobby. I have an office (ok, toy room) in the house where I can go and just get away from everything that’s bothering me, I can focus on something other than whatever is going wrong with my body at that moment. It may sound weird, juvenile even (though I’ve learned there are a massive amount of adult collectors out there), but when you live a life in pain and you are isolated a lot, it’s nice to have a distraction. At the suggestion of one of my doctors, this hobby has grown to include the building of LEGOS/Mega Bloks. He suggested it as a therapy to help with both my cognitive issues and the numbness in my hands. It’s actually worked wonders (I’ll even work on a set before I start writing because it seems to get my mind ready). Bottom line, finding some kind of hobby or distraction is important, just remember that you may find one some place you wouldn’t normally look.

The Way I Dress!
Ok, this may not be so odd, but, because temperatures can be such a trigger for me (especially warm ones), I tend to wear shorts a lot. Like sometimes even in the winter. Those shorts are typically cargo shorts, and you know what? In the summer, there is a good chance I have some sort of cooling pack in the pockets to help me deal with the hot weather. I also get very particular about the material of shirts I wear. If I find something that feels ok and is thin and breathable enough, I’ll buy multiples of that shirt. It may look to some people like I wear the same shirt constantly, when in reality, I have several of it. Finally, I wear flip flops most of the time. My neurologist hates that I do that, because I do tend to fall a lot. Since I fall a lot no matter what kind of shoe I wear, I stick to my flops (again, even in the winter). My hands get numb, so putting on regular shoes can be tough, unless I get my wife’s help. So wearing flip flops is something that allows me to take care of myself a bit. Not having to rely on someone for even that small of a thing is pretty helpful for my mental state!

I feel like I have a lot more of these I could talk about, but for now, I’ll stop here. I’d love to know though, do you have any ways that you’ve adapted to your life with MS that may seem a little different to others? So please hit up the comments and let me know, I’m always looking for some tips! Thanks for reading!

Devin
Click to expand...
Thank you Sincerely for sharing man. Nothing strange about action figures or legos. Good to know there's other online entrepreneurs around. Legos have always been a part of life for me, crazy prices now. Very good for dexterity, and constructing things all the time does change how we think. Problem solving and collecting, collecting all manner of objects. DVD's is a big one, geological and fossil specimens is another. Of course can't forget genetics from various vendors. My issues are different, but I have known patients with MS,Lupus, and other chronic illnesses who must deal with pain, seizures, cognitive issues, and flares.
Is it cannabinoids in general that help, a specific thc or cbd % or a certain strain you are looking for?
They used so many different strains, but because they were flavor hounds like me and never had a strain tailored for them. Flying Dutchmen's Pot O Gold, and Green Love Potion which I think is from Samsara, are two that come immediately to mind.
I have to admit, I don't read as much in physical form anymore, mostly digital. I would read dozens of books and learn some useful skills. Oddly homesteading has been a heavy one. Survival skills, self-reliance, subsistence, animal husbandry, and small-scale organic horticulture would be it.
Learning how to grow my own food and raise my own meat has been a huge interest of mine for years. Used to go camping and fishing, and I tie that in with my green thumb and my strong desire to get away from so much processed food. Home-cooked meals with fresh ingredients makes a difference.
Another hobby, cooking and trying new recipes and ingredients. Has helped when researching terpenes and trying to identify them in both food and flowers. I collect knowledge on hundreds of topics to keep my mind occupied.
Lastly, every one of these pets was a stray or something abandoned. They are little hellians, but they have a home forever now.
I think we all seem to like similar things here at AFN. Pets, good tunes, good meds, good friends, and good food.
Cheers bro.
tenor (15).gif
 
I got some new additions for my home pain regime. some from doTerra and other places and made some roller oil with a pure coconut carrier oil.works well too.

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