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I personally absolutely swear by my cool towel! Something like this
Just add water of any temperature and shake it out for 30 seconds and it's immediately cold to the touch. When it heats up just shake it out again and it's as cold as beginning. One drenching of the towel will last me 2-4 hours depending on how hot it is outside and how much sun exposure I'm getting.
Other than that, the basic wear loose cotton clothing. Not sure what manifestation of bladder issues you have but maybe consider wearing depends for the day in case of any accidents. If you'll be sitting in your wheelchair it's not like anyone will see!
I'm excited for you, this sounds like such a wonderful music festival to be so accommodating for disabilities. Have fun!
ACA marketplaces are open till Dec 15--if you really have zero dollars, they'll put you on Medicaid, and Medicaid is so rad--seriously, you don't have to pay for anything. I already pay taxes, so that's the deal. I was on medicaid in my early days of MS, and it's great because you aren't panicking about "wait, HOW much?" for your treatment. So you just get treated, it's awesome. check your state's individual plans. https://www.healthcare.gov/glossary/open-enrollment-period/
This story popped up in my google news feed, which sent me hunting for a closer-to-primary source on the matter. Turns out it was from last December, but I thought I'd post it none the less.
> So, do you want to insist on your prerogative to use obscure and ultimately useless definitions or would you like to actually contribute to people understanding our condition by speaking their language?
Obscure? Who knew the basic definition of the word was obscure?
yes - but i don't think, at least in my case, it's ms related.
my mom has tachychardia and my pulse tends to be 100-107 for the past year. doctors say "stop being so nervous!" i'm like - i'm not nervous - tacychardia runs in my family! :/ i also think i am sensitive to caffeine and boy do i love my coffee.
dizziness i get too but sometimes that's bc i forget to eat and most def. don't drink enough water. low blood sugar and also dehydration can both make you dizzy and cause elevated heart rate.
deep breathing helps to lower your pulse rate, i also put water on my face to lower my heartbeat. works bc of the mammalian dive reflex
when i was dizzy i called teladoc and they also said it could be a buildup of fluid in the inner ear. eventually it went away. you may want to read this
very, very difficult to tell what the heck is MS and what is...just plain old something else.
i'm still not 100% sure it's not ms so i'm interested in seeing what others say. i hope you feel better soon!!
I have been doing the keto diet (/r/keto) since before I was diagnosed three years ago, and stayed on it. The keto diet is a high fat, adequate protein, low carb diet. I found it so easy to stick to! What I have changed though is my fat sources. Instead of the saturated fat-filled foods I was eating, like full-fat meat, cream and cheese, now I eat mostly unsaturated fat like nuts, avocado and olive oil. I also eat many more vegetables than I used to. I have almost lost 50kg. I have occasionally put some weight back on when I've gone on hiatus (xmas, etc) but it's never been more than 1-2 kg and it's always been easy to lose it again.
My blood pressure, cholesterol & fasting blood sugar have gone from being almost metabolic syndrome, pre-diabetic, to being almost normal for someone my age (and I have at least another 20kg to go). Even better, there have been studies that found that a keto diet is neuroprotective, which is a plus. My whole outlook on life has changed since starting keto, despite my MS diagnosis. I'm 10x the person I was pre-keto and pre-MS.
A keto diet differs from a paleo diet in that paleo's emphasis is on protein, while keto's emphasis is on fat. It exploits a metabolic trick that allows your body to metabolise your body fat.
N.B. I'm not perfect, and I have been known to eat KFC crispy strips as a treat... But luckily they're the least carby item. My MFP diary doesn't really include leafy greens or most other vegetables as they have almost no macronutrients, so aren't worth following. I eat them most lunches, and some dinners.
I don't have a pic, but it's a print of this one: http://www.thingiverse.com/thing:18284
My plan is to clean up the rough bits from the support, then see how it looks after dipping it in Plastidip. :)
I've got a few cooling vest to try. Some more expensive than others. This one is provides a lot of value, for pretty low cost. https://www.amazon.com/gp/product/B07VCSQ1WM
My mum has had Primary Progressive MS for 33 years, got so bad she's in the nursing home and I've been trying to figure out ways on how to interact with her better; her mind is sharp as a tack despite being completely paralyzed and bedridden in a nursing home now - so I recently bought this for us so we can play chess: it hangs off of her cupboard and the pieces are big enough that she can see. It was really nice to have a positive moment and feel like I could interact with her in a way that gave her some agency. She used to teach science and math and is just so stuck just watching endless amounts of television right now, but she's so smart so, I was happy to find this and finally do something. I also brought my puppy in to hang out with her and was able to take her arm and pet the puppy; and the pup was so good! Thinking about getting her trained as a therapy dog. Really lovely moments I'm grateful for. Love and strength to you all <3
​
Well I never wanted one, but they hand them out as a going away present when I was discharged from the hospital the first time.
I still use it to this day, damn useful thing.
And I HIGHLY SUGGEST also using an app like this one, Medisafe, to help keep track of when to take them and remind you. Supposedly it also has some kind of integration to notify your pharmacy when your low and download to your doctor to let them know your taking it on schedule but I dont personally use those functions.
And when I volunteer at the hospital all the nurses chuckle when it goes off and they hear Elsa from Frozen sing, "Take your PILLS! Take your PILLS!"
If your parents have health insurance or will be getting it in the future in accordance with ACA requirements, you should be able to enroll under their plan until the age of 26. If this isn't an option for whatever reason, you will need to get insurance on your own to make the appointments needed for a diagnosis. I mean, you can front the money on your own, but you really don't want to do that since typically the route for a diagnosis is to consult a GP, who then will refer you to a specialist (a neurologist, if MS is suspected) and the costs will start spiraling, to say the least.
Your eligibility for insurance depends on what your income is like. For low income individuals (Defined by the ACA as people making like <=138% of the FPL. This figure is mandated by the federal government, some states may put the figure higher) there's Medicaid, a joint state/federal program for people that can't afford healthcare. You can check if you qualify here: https://www.healthcare.gov/medicaid-chip/
If you make too much to qualify for Medicaid, there's CHIP for people 19 and younger, but to be honest I don't know too much about the program or if it'll help before you age out of being eligible.
Roman,
I believe most visual disturbances (minor NOT blindness) are caused by optic neuritis .
I would definitely mention it to a doctor because while there is nothing to make it go away, a steroid pulse may help it pass faster for you.
I had optic neuritis in 2005 that led to my eventual diagnosis. After that cleared up my vision returned to normal. YMMV since this disease is different for everyone.
Hope this helps!
I don’t drink anymore for pretty much all the reasons that have already been mentioned: bladder, hangovers worse than death, vision, balance. But it took me many years to get there. You have to get hammered for your 21st. Mandatory. Be safe. Have fun.
https://www.webmd.com/multiple-sclerosis/features/do-ms-alcohol-mix
Well, this may or may not work, but I found a Giraffe extender handle for a razor on Amazon. Although to me, it looks too long to be useful for underams. https://www.amazon.com/Giraffe-Bath-Body-851000005003-Extension/dp/B00HXQP3VA
IDK about any of the other female old-timers on here, but as I have aged, I honestly have a helluva lot less hair -- everywhere. I'm 57, and actually think of it as a benefit of being "mature." My 6 underarm hairs per side only need attention about 4 times a year. I'm disappointed that it does not save money for deodorant, though!
You would probably benefit from a cooling vest. They are popular with our kind of folks. The NMSS has a giveaway each year, but they always run out. I would check their site before buying one, however. They may still have them, I don't know. Otherwise, you can get one from Amazon.
This one is a great one. It's kind of pricey, but really good for sports and physical activity. I think it is well worth the money.
Glacier Tek Sports Cool Vest with Set of 8 Nontoxic Cooling Packs Blue https://www.amazon.com/dp/B07BFKX45L/ref=cm_sw_r_cp_apa_i_HYq.CbD1NCJ79
I was just going to suggest getting hard-bottomed slippers instead of the grippy socks (these ones are on super sale & I just bought a second pair cause they are sooo comfy: https://smile.amazon.com/gp/product/B07XF3K7SG/ref=ppx_yo_dt_b_asin_image_o01_s00?ie=UTF8&psc=1 ) because if you are dealing with an impaired gait there are a fair number of things that can go wrong when wearing socks.... My dad has had MS for 32 years & some of the issues we have come across when he's not wearing hard-bottomed slippers:
He once stepped on a thumbtack & couldn't figure out "what that clicking sound" was because he couldn't feel the tack in his foot.
He has sliced his foot open (more than once) when a threshold was loose - the slice was caused by a loose nail.
He has stubbed his toes & actually lost toenails.
if you have stairs in your home the grippy socks can pose a falling danger, whereas a hard bottom slipper can help prevent falls
Grippy socks can start to sile off & if you don't have the feeling in your feet to be aware of that the socks are a tripping hazard.
Those are just a few challenges we have experienced- wish you the best of luck!
Depending on the humidity in the area, a swamp cooler might work. I grew up in New Mexico, and our swamp cooler ran all day and pulled very little power.
Or Amazon has ones that can be powered from USB.
Here's a mug I found on Amazon few weeks ago. I thought it was pretty funny ��
I found it in the Google play store using the web browser on my iPhone:
https://play.google.com/store/apps/details?id=com.healthline.msbuddy&hl=en_CA
Take a look at this website also - depending on how long you’ve been here, your income, and your state of residence, you might qualify for Medicare.
https://www.healthcare.gov/immigrants/lawfully-present-immigrants/
I remember when my doctor said it might be MS. I was half terrified beyond belief and half relieved to finally find out what was wrong. Do your research, get the tests done, and just give yourself time to process everything. It’s not a death sentence.
I'd agree with the rest, listen to your body! On the other hand 12+ hours sounds like an awful lot to me, but that might be because I'm rather on the 0.5 hours side...
As for the discouragement of "vigorous exercise" - I think this has nothing to do with exercising itself, but with its effects on your body.
First one is obviously heat - your body temperature increases during workout. There are MS patients that are very heat sensitive, leading to an aggravation of existing symptoms - in that case it should of course be avoided. But that's something you have to find out yourself. I was diagnosed last summer, and in the meantime I know that some running is definitely OK and I'm not overly heat sensitive. I did however quit going to the sauna during winter because I didn't dare to...
Secondly, when your body is exhausted your immune system responds with an increase of some immune cells. As you probably know by now, this is something we would like to avoid ;) (see eg https://www.researchgate.net/profile/Holger_Gabriel/publication/14089601_The_Acute_Immune_Response_to_Exercise_What_Does_It_Mean/links/09e41509a6b2b90558000000/The-Acute-Immune-Response-to-Exercise-What-Does-It-Mean.pdf).
In the end, the decision is always up to you - if it feels right, do it. Just don't over-do it ;) All the best!
I have light sensitivity, I don't know if it's an MS thing or just a pale eyes thing... but brightness makes things hard to see for me.
Dark mode is amazing. I also really like an app called f.lux https://justgetflux.com/
Maybe blue light filtering glasses would also help?
Reviews are highly concerning https://www.webmd.com/drugs/drugreview-169034-Glatopa+subcutaneous.aspx?drugid=169034&drugname=Glatopa+subcutaneous
I can't even believe they are willing to switch so quickly. I don't want to risk a life because they want to be cheap. Copaxone is well tested.
I have only recently heard of tysabri, I've seen it discussed on facebook. Many are scared of it, some report acceptable health, some hate it but scared to quit -in case. Some have been diagnosed with PML. Ask many many questions. You have options. Google tysabri, see what other countries say and allow, look up the studies, see if the results are acceptable to you.
I also recommend CCSVI in multiple sclerosis on facebook it's a group of people that came together to discuss Zamboni's liberation treatment (or venous angioplasty), but it has turned into a big group (20,000+) of people discussing ms and issues. I know it is not reddit, but i have never experienced such a large collection of info, links, current events and personal experience specifically on ms. My dad had ms, i was diagnosed in '95, did Avonex for 7 years and have been treated for ccsvi.
Good luck, keep asking questions.
I have to agree. Here in Canada they won’t give you steroids unless you can’t walk or have a bad bout of optic neuritis (can’t see). This is because steroids can cause avascular necrosis of the major joints (hip, shoulder etc.) in as little as 3-5 treatments resulting in joint replacement. Unfortunately some doctors still prescribe it willy nilly and patients end up with osteoporosis or worse, avascular necrosis. We’ve had MSers on this sub in this situation and it’s not pretty.
Also many people think that steroids prevent damage or change the course of the relapse and here they state this is not true, that steroids simply shorten the duration of a relapse and otherwise have no effect on the outcome. If this is the case, it probably isn’t worth it or recommended unless you’re having major issues (e.g., paralysis, blindness etc.).
[edits for MS-brain 🧠 mistakes]
https://www.webmd.com/drugs/2/drug-154676/gilenya-oral/details/list-sideeffects my husband’s skin issue started a few months after he’d been on it so at first we weren’t sure if it was his immune system was suppressed and so his body wasn’t effectively fighting it off or it was a side effect. Seems like it’s the latter.
I just sent a spirit jar to my nephew(4 years old) last week. He rode with me on haunted mansion a couple months ago. According to my sister he made his own haunted mansion ride out of a wagon he pulls around the house. https://www.amazon.com/dp/B07W9FJTLZ/ref=cm_sw_r_apan_glt_fabc_DJZV7N67E4D1EBQ8ASWM
By the way Disney world has the DASS pass for those of us that can't take the wait in lines due to medical issues. It works like an old school fast pass for 6 people with you. So I check-in at the front of a line with those with me. Then I go find cool place to wait, while they run off to ride something else.
Depends on what you need it for. Sounds like you're trying to find one that hides under your clothes. I've not really found a good one for that.
The one I use, and have been advocating is this one: https://smile.amazon.com/gp/product/B07VCSQ1WM , mainly because it is cheap and comes with lots of ice packs.
Is it the best one for fashion, no, but it does just fine when I'm working around the yard or house. And it's cheap enough, I bought two.
I was diagnosed in Feb 2021 as well. In retrospect my first issue probably happened about 5 years ago.
Fatigue is definitely my biggest issue too. I've been put on modafinil and it is a game changer for me. Only been on it a month or so, but it allows me to be alert throughout the day if I take one in the morning. A bit jittery the first week, but that went away.
For exercising I do exercises provided by a physical therapist for my numb leg. We want to make sure it doesn't atrophy since I can't really feel it. I walk as much as a I can and bought an exercise bike. And for days when my balance is making me sit a lot, I bought one of the sit down ellipticals. I've been really pleased with it, surprisingly good workout from it. https://www.amazon.com/gp/product/B086W3FFRP
Cooling vests tend to be pretty pricey. I saw this one on Amazon a few weeks ago and bought it because it was real cheap. Honestly, it works pretty well. I wore it this weekend to work in the yard in 90+ degree heat and it did a great job.
My wife got me one of these neck massagers for my birthday recently. It's life changing. It works so well on so many muscle groups, especially my neck and shoulders.
https://smile.amazon.com/dp/B07PQRWQD9/ref=cm_sw_r_cp_apa_glt_fabc_ZPV96KEP0VKEJVJX26D6
This started up for me about 4 months ago -it really sucks! I got a wedge pillow and it has helped me a lot, I mean a surprising amount. Might be worth a try for you.
This is the one I got but there are hundreds https://www.amazon.com/JOYPEA-Wedge-Pillow-Reading-Support/dp/B07Y2RSYQ1/
MACA root supliments have helped me. When I first diagnosed I could not complete but since being on Maca root supliments I can finish myself. Haven't tried intercourse much because wife doesn't want sex but try Maca supliments. I take one pill twice a day.
I use a Sukuos Quick-Fill Pill Organizer
It's large enough to easily hold whatever I need, and the "quick fill" feature makes loading it supper easy. The only thing I don't like about it, is that it's 2/day and not 3/day.
My work around for temperature check is a electronic thermometer. I don't trust hand temperature readings anymore. https://www.amazon.com/BRAPILOT-Thermometer-Digital-Cooking-Waterproof/dp/B08SVX6TS1/ref=mp_s_a_1_4?dchild=1&keywords=digital+thermometer+cooking&qid=1621106230&sprefix=digital+thermometer+c&sr=8-4
Omg yes I have pants I LOVE that are super light and perfect for hot but you still want shade. https://www.amazon.com/dp/B077SWPN14/ref=cm_sw_r_cp_apa_glt_fabc_NDTRPC1PMPPHJ73FKGHG?_encoding=UTF8&psc=1
I love those but sun can get through so they're great for hot shade. Very lightweight. And I wear like a white shawl to cover my skin. I'm very sensitive to the sunlight. But yes flowy stuff is great.
I live in Colorado and it's super dry so I always have a pva cooling towel and a fine misting spray bottle and evaporative cooling is amazing!! I keep everything and lots of water in my little backpack or in my scooter basket.
It can be done if you just go prepared and know your limits
Literally just enaging with any object, holding and trying to manipulate things. The trigger pointing was mostly done to untense muscles and maybe provide some tactile stimulation - I use a roller thing on my legs, its similar in spikey shape to what was used on my hands in rehab.
Intercoms Wireless for Home – Wireless Intercom System with 10 Channels 3 Code – Long Range Room to Room Intercom System for Business Office House Bank Commercial Communication (Pack of 2) https://www.amazon.com/dp/B08N478NWJ/ref=cm_sw_r_cp_api_glt_fabc_X9CPTBCTTR0BDH3JPYT0
Found those on Amazon, there’s different brands if you search for “home/office intercom” not sure if that helps! Good luck in your search.
I'm not sure this is at all helpful, but my husband bought me this chair for my birthday: https://www.amazon.com/gp/product/B085RPQ64V/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
It's really comfortable to me. Several times I've fallen back into it by accident while standing up, but it's really padded. It seems pretty sturdy, too.
The biggest complaint I have is that the seat is just a smidge too tall at its shortest height, so I have a pillow I put under my feet.
My wife has been on Aubagio for 5 months or so. She's been having GI problems as well. She started taking probiotics every day and it seems to help a little bit. She's going to a MS specialist neuro later this month for another opinion on medication.
I use R alpha lipoic bc it is less disruptive to my gut.
My husband like Whole Foods brand.
not so far -- but I find wooden walking sticks very helpful -- they keep me upright for a better stride and more stable than a cane (even though my left leg drags).
I don't like collapsable hiking poles, because they did collapse! Check out amazon -- https://www.amazon.com/gp/product/B009NYUWRK/ref=oh_aui_search_detailpage?ie=UTF8&psc=1
I bought 2 and cut to fit for length then added rubber crutch/cane tips -- people think they are cool :) . haha (obviously wish I didn't need them)
>You won't be able to find that over the counter, and you'll wrack up your bill pretty quickly trying to take 50 - 1,000IU vit D3's!
I take 50,000IU per week in one tiny capsule. A year's supply costs $30 and can be purchased on Amazon.
Best brand i've used is Kafka's Kool Tie. I think they are the original cooling towel and even say on the packaging that they are made for people with migraines and MS.
You can get them at REI and Amazon.
Shiatsu foot massager. I got it on Amazon for $50 but it weirdly costs more now. I don't use it often but when I do my feet feel really good. Guests without MS report similar experiences with it.
I've never heard of it but after doing some reading I'm not convinced it's so good as to justify such a hefty price tag. One review on Amazon was titled "Deafening noise":
>This is just a drill with a clown nose attached. Lacking variable speeds or actions (i.e pulse). The worst part is the loud audible sound that makes your ears ache. After two minutes I had a headache. Immediately returned. Go buy yourself a mitre saw.
But who knows, maybe it is awesome. I myself use this $30 massager on tight muscles and it works great:
Scotch Tape do this little holder than has a wide elastic band to go around your hand. Inside the holder are pre-cut strip of tape (stacked kind of like z-notes) so you pull one out and the next is ready. Has made present wrapping so much easier. Amazon link: pop-up tape dispenser
Under Armour Men's Ignite VI Slide Sandal https://www.amazon.com/dp/B07PYYLSRY/ref=cm_sw_r_cp_tai_mTapFb3BNYRSX
I use these, which have an adjustable width. I like plastic rather than cloth because they retain their shape when I throw them in the wash. I hope this helps. There are all kinds of New Balance shoes with breathable fabric.
The authors of the MS Recovery Diet book do indeed list nightshades as one possible food that can cause flares in symptoms. Similarly, Dr. Gundry lists tomato skins and seeds as a source of "lectins" which are bad for people with auto-immune diseases. (Gundry has a theory that many/all auto-immune diseases are caused by gut issues.)
> He wants me to eliminate nightshades and reintroduce them one at a time to see if I have any problems.
Sounds like a good idea, one with few risks. It's a hassle because tomatoes are in about everything but like I said it's easy enough to try.
There's an app called TecTrack that can remind you when to take pills. It's available on Google Play and the App Store.
Very cool, I included my current experience and thoughts about a tracker. I'm on Copaxone and my app of choice for tracking and rotating injection sites is Regularly. It's just an overall good app for people that let things go to the forgotten side of life.
I use an Android app called Regularly. It is really great to help with recurrent tasks. I'm also on Copaxone and have an alarm for each injection site, looped to the same numbers of days as the number of sites. It will stay on your notification area until dismissed, you can set its own alarm and you can see the next tasks when you open it. I use it for a lot of things, really.
There are a few apps available though they are often in German. Maybe take a look and do an English version?
They are used for tracking symptoms and scheduling exercise.
It really depends on your goals of the app.
https://play.google.com/store/apps/details?id=de.interactive_systems.msdiary
https://play.google.com/store/apps/details?id=de.teva.copaktiv
Patricia Fennel has a professional program for therapists and this chronic illness workbook for patients.
You might see if there’s a therapist familiar with her work.
It is caused by all the nerve endings being jumbled up (or so I was told). I have discovered that compression gloves help my hands. They are sold as gloves for arthritis, and are like this https://www.amazon.co.uk/SUPERFA-Pairs-Arthritis-Gloves-Women/dp/B081H1ZTH9/ref=asc_df_B081H1ZTH9/?tag=googshopuk-21&linkCode=df0&hvadid=399639082973&hvpos=&hvnetw=g&hvrand=6403392410746122528&hvpone=&hvptwo=&hvqmt=...
I take this every night. I also have an Apple Watch with an app that tracks my quality of sleep. https://www.amazon.com/Natures-Bounty-L-Theanine-Occasional-Sleeplessness/dp/B07PXT5LYR/ref=cm_cr_arp_d_product_top?ie=UTF8
This book is coming out soon that details some of Dr. Richard Burt's cases and experience treating MS. A former colleague of mine's sister was cured of her MS at Dr Burt's clinic.
SStanding Fanomething to think about in the future… if it does start to bother you.
A little googling found this gem, admittedly not MS-specific: >Costa Rica also offers generally drinkable tap water, high-speed Internet and good phone service in most places, and a taxi and bus system that makes it easy to get around even without a car. Plus, the health care is high-quality and affordable, says Gloria Yeatman, who has had a number of procedures in the country. The Yeatmans pay about $55 per month for health insurance.
>Americans who obtain residency status—which you can do by proving you have at least $1,000 in monthly income from Social Security, a pension or retirement fund—can enroll in Costa Rica’s public health-care system, where you pay a small monthly stipend based on your income and can get access to more than 30 hospitals and 250 clinics. International Living, a magazine and website devoted to living abroad, estimates that health care here is about a third to a fifth of its cost in the U.S. and that doctor’s rarely charge more than $60 per visit, even for house calls; private health insurance typically only costs about $60 to $130 per month. source
I'm sold. What time do we leave? =)
I have similar issues and use a rollator. I have two, one in the car and one in the house. I used a cane for several years and "graduated" to the rollator a few years ago. The one I use is easy to fold and can partially fold while using it to get through tight spaces like restaurants. I can fold and lift it into the back of our SUV without too much trouble. The seat means I have a chair wherever I go.
Thanks for the rec!! Ive heard worksman are workhorses and last forever. Im so glad you love it! Now i am wondering should i get a folding cargo bike (I coud always add something to the back of a worksman though i see they already have a basket), or a tiny one like this, just thinking of carrying it down the stairs all the time (no ramps or elevators where i live). Thanks for the tip, Ive added it to chart. I guess I gotta see how much everything weighs.
I like this mouse. The reviews are correct that the only thing bad about this mouse is the price. It's hella expensive, but I don't think I've come across a mouse that needed less dexterity
https://www.amazon.com/dp/B00DE83RSC?ref=ppx_pop_mob_ap_share
Thank you so so much <3 Things have not yet, but, i have started another dose of steroids because, according to my Neuro, my MRI results (that i got spam called about (FROM MY NEURO D; until i answered until i managed to call back about an hour or so after i got home) they were BAD so - steroids and possibly this: https://www.webmd.com/multiple-sclerosis/plasma-exchange-ms if the steroids don't do enough >~<
I'm using Om brand LM and TT powders. They use both the fruiting body and the mycelium. I can find arguments for/against both so I figured I'd try an affordable one with both to get at least some benefit.
https://smile.amazon.com/Om-Mushroom-Superfood-Nootropic-Creativity/dp/B09FD8C16B/
People get really religious about brand, dose, fruit vs mycelium etc but there's really no definitive information so just do whatever seems reasonable. And don't expect big results overnight.
Reddit has a ton of microdosing info including a subreddit: https://www.reddit.com/r/microdosing/
I have been told that every county has a center for independent living that helps people find resources to be able to love at home. Also you will find more resources if you search for elderly resources (even if she's not quite of that age).it's just an easier way to find resources as most are listed for that yet they help anyone who is disabled. I'm sorry that I don't have much advice.
I was thinking for the screen door some type of Silicon mat to cover the screen door tracks?
I found something on Amazon but not sure if it would be practical for you as who would lay it down for her and such. amazon threshold ramp
> Should I just not - Is it messed up to put that kind of stress on someone her age?
Children have a gut instinct with regard to their parents, they know when something is amiss.
They will worry about you regardless of whether they know or not, which is stressful, but I firmly believe that it's better for them to know and be able to ask questions than to feel like mommy is keeping a scary secret from them.
I recommend looking for age appropriate books on the topic of MS. A quick search resulted in this one, but I'm sure there's others out there. When in doubt, ask your local librarian, MS nurse or your local MS society.
I'm not a medic (my doctorate's PhD-flavored), so can't answer directly. One of the books I read when I was diagnosed might be helpful to you, though: Multiple Sclerosis from Both Sides of the Desk: Two Views of Ms Through One Set of Eyes . It's a semi-autobiographical book from a neurologist who has multiple sclerosis himself, with some on MS itself and some on combining it with being a doctor.
I also saw a recent Reddit discussion from someone diagnosed with MS just before starting med school. Not exactly what you're after, since he's obviously a bit earlier in his career than you, but the discussion was at least reassuring.
I have one, best thing I ever bought! I also got a knee support pillow for bed. It really helps take pressure off my joints when I have to spend long periods or time recuperating in bed. https://www.amazon.com/Pillows-Sleeping-Pregnancy-Removable-Washable/dp/B09NXC6RGL/ref=mp_s_a_1_6?crid=1B19C7E87OJT2&keywords=knee+support+pillow&qid=1660995338&sprefix=knee+support+pillow%2Caps%2C201&sr=8-6
It's this thing LightEase Post-Surgery Leg, Knee,... https://www.amazon.com/dp/B09J25M5RT?ref=ppx_pop_mob_ap_share
I put it on the bed with a heating pad on top and then my calves. Pure comfort :)
I'm assuming she's still active, so a sling pack to go with those trekking poles. Mine has a pocket for a hydration bladder, and just enough room for things that may be needed immediately, like snacks, Jolly Ranchers for an energy boost, and maybe look into one of those ultralight folding camp chairs that can strap to the outside of it. She may find she needs to sit for a moment on a walk, but nothing is available.
I couldn't find the exact pack I use, but this is close.
And this is an example of the chair.
The pack has the same dimensions as mine, and today I packed it with a spare pair of thin athletic pants and briefs, just in case, two one liter bottles of flavored sparkling water, chargers for my cell phone and Kindle, my 10 inch Kindle Fire, my earbuds and charger container, and I threw in my wallet, phone, and keys. I had tons of room to spare, and it was really light. I've not used a chair like that, as I'm a big guy, and I'd break it lol.
Get a cooling blanket and pillowcase. 😎 Best money I've ever spent
The peanut has been a game changer for my partner and her neck / back pain. It was recommended by the physical therapist, here’s the one we use: Psoas Muscle Release Tool and... https://www.amazon.com/dp/B08FY88FZX?ref=ppx_pop_mob_ap_share
I don't know if her pain is muscle pain but if it is I've had success using a TENS unit liek this SomaCare TENS UnitThey're similar to the things with the sticky pads that zap and contract your muscles. Mine was like $40, comes with 4 pads and a little booklet on where to place the pads for the most common areas. The way they work is you place a pad on either side of the painful area and the current that goes through short circuits the pain message so it doesn't reach your brain. It's not comfy but when my back or calves hurt it's a relief. Mine has 9 different pattern setting and each goes from 1-10 with intensity and has a timer up to 60 mins. It's about the size of a pack of gum so when I'd use it at work I'd just pop it in my pocket.
I sleep hot, too. I have a cooling blanket that helps me sleep though the night. Hope this works for you, too.
I use these when I am out to cancel out sounds, warning you are almost completely deaf if you wear them so sometimes I pull back an ear https://www.amazon.com/Soundcore-Cancelling-Headphones-Comfortable-Bluetooth/dp/B08HMWZBXC?source=ps-sl-shoppingads-lpcontext&ref_=fplfs&psc=1&smid=A294P4X9EWVXLJ
I'm also a side sleeper. I wake up every few hours to pee or something, and switch sides, so I'm no always sleeping on one side. I also got a pillow for my knees I can't live without.
Omg Im so proud of you. I smoked since 13 till about 37. I’ve posted about this before - how it was a part of my identity and how I think that’s the hardest thing to deal with. It’s such a hard thing to do.
But - and others have posted about this too - something worked. It’s gonna sound crazy and dumb and like I’m promising you a magic pill. But I’m not. It’s so totally… basic.
Alan Carr’s Easy Way to Stop Smoking
It’s a book. A really short book. A book I never even finished reading. A book that changed my Life. Which sounds so cheesy and culty. Lol. It’s the exact opposite of that. It’s still on my bookshelf just in case.
Anyway I know how hard it is and I’m so proud of you.
Get some ice packs it really is soothing for the nerve pain. I like these. https://www.amazon.com/Gel-Cold-Hot-Pack-Reusable/dp/B07VDMZP65/ref=mp_s_a_1_1_sspa?crid=3Q15WD549RE7D&keywords=resters%2Bchoice%2Bice%2Bpack&qid=1655915864&sprefix=resters%2Caps%2C97&sr=8-1-spons&psc=1&spLa=ZW5jcnlwdGVkUXV...
Have you looked into one-handed keyboards? Honestly mechanical keyboards are worth it for customization. I can type without having to apply a lot of pressure to the keys. One handed layouts for a regular keyboard? A chorded key layout like (the sadly discontinued) frogged keyboard I use this mouse which I will admit is hella expensive but I haven't found a better one for my limitations.
Why can't you look at a computer screen? I'm going gonna guess some solutions. Computer glasses to filter out blue light and glare. Reducing brightness. Using something like Flux to change the colors to be less attacking on the eyes. Changing basically everything to dark mode. Chrome even has some pseudo-hidden settings that does this for websites that don't have a dark mode.
Let's move to fatigue. If you could have a break in your day would that help? I'm a programmer and I prioritize jobs that allow me to work mostly on my own time. I do 4 hours, then a 2 hour nap, then 4 hours and that has been perfect for me. Even if I'm not as good in the afternoon, it's enough to to light programming work and administrative stuff. Perhaps find jobs where being available 8 consecutive hours isn't mandatory would work.
I live in New England, although it doesn’t get to 112, we get into the 90’s with very high humidity and it’s a mess every summer.
A couple things that have helped:
- Fudge pops, watermelon/clementines or other juicy fruits left in the fridge, something cold that I can eat relatively easily once I get home to cool off quick. I’ve also thrown a couple in a cooler with ice packs for a cold snack while I’m out
- Cooling vests, not this one in particular but something like it. Also, having a small one you can wrap around the back of your neck does wonders in cooling you off
- I’ll bring a thermos of cold water with me primarily to stay hydrated, but I’ll pour it over my head when I’m getting desperate. Helps clear my head pretty decently
I hope these can help! Summer is brutal.
My partner got me Bird Buddy for my birthday, its a bird feeder with an AI camera that recognises birds and sends notifications to your smart phone over wifi.
If the foot drop can not get relief from the PT ask about an Medical AFO Foot Drop Brace Ankle Foot Orthosis if needed.
I use Insightful Products Step-Smart Drop Foot Brace (Left Foot - Large/X-Large) https://www.amazon.com/dp/B0758K7J4B/ref=cm_sw_r_apan_i_J07ZP8RWP57JA8XB26F9
I’m doing Universal with my family in a couple weeks. It’s my first big trip since being diagnosed so I’m going to play a lot of it by ear. My mom has ankle issues so she already brings in a scooter, and I’m taking my cane. She said we can switch off using the scooter if I need time to rest. I also just got a neck fan to use. Feel free to shoot me a message after June 8th and I can let you know how it went.
I used one of these last summer during boy scout camp. It was 90+ degrees on most days.
https://www.amazon.com/gp/product/B084RCRMV3/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
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It was a god send.
This is the one I take. I believe it is half R, half S, if I remember correctly, it's been a while since I did the research. https://smile.amazon.com/Nutricost-Alpha-Lipoic-Acid-Capsules/dp/B01CKLMWYS
I take 1200mg a day. From what I've read, you need at least that much to be clinically effective.
I'm 37 and feel the same way. I can't stand the old school pill boxes! I got this one from Amazon and love it. I used my Cricut to make MTWRFSS tags for the inside of each compartment but you could also use a Sharpie.
The weirdest thing I’ve noticed is that I’m more sensitive to both hot and cold. Inside where it’s about 68-69 I like to be way more bundled up than before. I mostly just stay inside or make sure I am able to escape the heat quickly. I haven’t tried to do anything outside in the day for too long yet out of fear. I did overheat when we were visiting my in laws who don’t have AC, it took over an hour in the shade with a fan for the pain to subside, so I feel for you 100%. I do really like this fancy neck fan I bought and can see it helping a lot
My husband has this vest with an extra set of ice packs. Works really well for the heat! He wears it especially when doing mowing, yard work, etc.
FlexiFreeze Ice Vest - Personal Cooling Cold Vest for Heat Relief, Navy https://www.amazon.com/dp/B01MQ3NW7U/ref=cm_sw_r_cp_api_i_6SJ7Y2FP85JS08WW05E2
There's actually a few things you can do when you're on the toilet. You should get one of these:
People are naturally meant to squat to relieve themselves, this promotes that sitting position on a modern toilet.
In addition to that, if you rock back and forth, side to side, and move in circular motions it promotes your intestines/bowel to move the contents naturally. You can also incorporate yoga into your day to day life. Movement promotes your body to process the food waste.
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Best of luck! I highly recommend the squatting stool :)
I need a bag that is, itself, lightweight, because I usually have at least one water bottle with me. Here's my new favorite, found on Amazon.
https://www.amazon.com/dp/B0747TCNHD?ref=ppx_yo2ov_dt_b_product_details&th=1
I use a seated cross trainer https://www.amazon.com/dp/B072JHYQGC/ref=cm_sw_r_apan_i_GVG9WJY27F3BQY7SXSCD I am left side disabled and this works.
I would look for a gym that has something similar. You want feet buckle and arm movements linked to legs. So your arms can assist with leg movements.
Your at a tipping point of looking for ground floor housing or lift, when lease/rental agreement ends. The question that made my decision is what happens if I having a bad day and emergency occurs.
I got I got this despite the reviews. They stiff broom stops shit from flying and the pan you just tilt.
It RULES in small spaces like my bathroom.
My infusion center uses Merax Electric Power Lift Recliner Chair Lazy Boy Sofa for Elderly, One Size, Black https://www.amazon.com/dp/B01MA6OYJK/ref=cm_sw_r_apan_i_51W8MGMVQRZZV88HAJFQ
Stair lift you will need to contact a local installer.
(Hard note future proofing) I question total usefulness cost wise as secondary issues will require more retrofiting from bathroom to door ways as wheelchair access becomes an issue.
We ended up moving to a 55plus community. We where able to have a house custom-built with fully accessible master bathroom and second room that attachs to master bath an extra wide door to great room. It turn out to be around the same price as retrofit previous house. So when from three story 4 bedroom 2 bath to a ranch 3 bedroom 2 bath that is future proof handicap accessible with a den that can be turn into 4th bedroom that is accessible when it require. No steps and already using accessible bathroom as not able to step into a tub.
https://www.amazon.ca/Texturestar-Pure-Trehalose-Sugar-Glycemic/dp/B086XDRFQP
And a T1 black hole is what happens when a T2 lesion fails to remyelinate effectively, exposing the underlying axons to degeneration (dissolving) from oxidative stress. Which is the main process underway in SPMS. And no.. unfortunately none of these look like they have any potential to stop MS.
The studies on these substances are light.. but if the findings are accurate, they might help to delay progression, in a complementary way that no DMT currently offers. I take rituximab to avoid relapses and more lesions, but in my case, the damage is done. Anything that can delay / prevent degeneration of existing lesions has my complete attention!
Fish oil, I have been more regular since taking it. Dr. recommended one pill per day, not 2 pills listed on package. They are horse pills(extremely large).
Link to blue ocean that he recommended.
Oceanblue Omega-3 2100 with... https://www.amazon.com/dp/B09BG3N2KN?ref=ppx_pop_mob_ap_share
This was a life saver when I went to Vegas in July. Kept me cool in 120 degree heat! Ergodyne Chill Its 6700CT Cooling Bandana, Lined with Evaporative PVA Material for Fast Cooling Relief, Tie Closure https://www.amazon.com/dp/B007PDC2HY/ref=cm_sw_r_cp_api_glt_i_E27WJ6KDB7K5YWVXEZSD?_encoding=UTF8&psc=1
I've used https://www.wunderground.com/history for stuff like this before. It gives an hourly review of the weather that day. You'll need to manually select the dates and stuff as I don't think there's anything that's been written to spit out something like your location on google maps and local weather at that time. But you could definitely use this and your Google maps location history if you have Android to build a pretty clear dataset.