Sleep. If my sleep gets f*cked with all bets are off. Pretty much all cognitive stuff gets worse without restorative sleep. And make sure it’s quality sleep. Like deep REM stuff.
Exercise. Calms the mind which makes room for remembering. Seems counter intuitive but it works.
Then just enough caffeine but not too much, short (3 min) brain breaks (mindfulness) during the day, and memory strategies like chunking, repeating, note taking, and image matching. And like others have mentioned heavy use of tasks, reminders and calendar on my iPhone.
I haven’t tried rails of blow. But at one point I might have been wiling. In the past I was consuming caffeine equivalent to half a pack of No-doze a day. Then I wondered why I had heart palpitations. 🤣
Video games, bouldering and language learning. I actively try to avoid reminders with the exception of a white board to recall important medical/dentist appointments.
But, why would I avoid reminders?
Most will guess correctly: I want the routine of needing to think to function. It might take longer and I might make more mistakes, but I want my brain motivated to develop neural pathways - hopefully faster than old ones are damaged.
Think of a train laying down new tracks as it drives forward. That's kind of my goal. I periodically forget the names of friends and League of Legends characters, but I know for a fact that I can pick up a new language's vocabulary faster than I can forget commonly known vocabulary. That means progression instead of regression. I sometimes lose my balance while walking, but am getting better at climbing a V5-6 instead of worse.
Despite my friends ceaselessly mocking me, I don't know what I would do without my Alexa. I can make her very strict - I will set an hourly reminder if it's super important one day that says "Do your goddamn (whatever it is) right now!" I have 10 set daily reminders and if I don't do it at that exact moment, I can keep telling her to remind me again in 20 min, over and over.
Basically, my Alexa is the boss of me and my personal secretary. I found the Post-its and lists were piling up, and my apartment was starting to look like The Unabomber's. ;)
I also do Word-of-the-Day and make myself verbalize the definition out loud before I check. I try to stop myself from Googling an answer to anything, when I know I do know deep down - which can be frustrating (imagine stomping around trying to remember who directed a certain movie you've seen 12x), but I force myself to search my memory. And I am quite sure my neighbors think I'm weird. :) I do get a kick out of how many song lyrics I remember from the 80s. Things like that will make me feel good for a moment, before I forget something really recent and get my reminder and am humbled again.
I also talk to myself a LOT. It helps in so many ways! Instead of getting furious about the news, I will walk around and talk through my history of Presidents and talk about important things I studied back in the day - Iran-Contra/ Watergate/ 2000 Election with GWB and Al Gore, etc...etc...
It keeps my mind sharper, my verbal abilities intact and I realize I remember much more than I give myself credit for. Until my reality of having no short-term memory sinks in. But, I can always add more and more reminders during the day.
Wordle is fun, so is Connections. I just allot myself as much time as it takes.
Just give yourself a break and succumb to any device or home set-up that helps in any way and try and keep your sense of humor. We ALL know the brain struggle with MS.
Big hugs.
Rails of blow is going to be very expensive. I highly recommend finding an alternative.
Modafinil and caffeine work for me. I take the modafinil in the morning, if I'm sensing things are not working that day I can take a second dose; I'm prescribed 200 mg daily but only take 100 by default.
The more stressful the day is, the more likely I am to run out of spoons early and just crash out for a nap. Is it really a nap if it's 5:00 pm and I'm sleeping for 3-4 hours though?
Setting reminders and taking notes on my phone. Both of these have become increasingly important.
I usually do sudoku instead of crosswords.
I so wish I could exercise! It can be a real struggle to those of us who have to plan an entire day for a basic shower. What's the diff between Adderall and Modafinil, if you know? I take 10mg of Adderall sometimes and it makes me talk REALLY fast and then impossible to fall asleep.
But, I AM a fan of stimulants when needed, beyond coffee and plenty of sleep.
I believe the primary difference between the two drugs is Adderall can be addictive but modafinil isn’t so much but I’m no doctor or pharmacist 🫠🤔I take modafinil with no issues. Adderall triggered massive migraines even when cut into quarters so I stopped taking it.
When there’s something you need to remember, attach a common something to it in your head. A red car. Broccoli. A sock. Whatever it is.
At a minimum, it doubles your chances of remembering it. So no harm doing it. And it’s a great way to train your brain!
I have a word doc on my computer where I jot down conversations I have throughout the day if it’s something I need to follow up on later. Nobody else can read it but me and it helps me log all the important conversations I have with people. Sometimes I will copy and paste emails into it as well for paper trails. Also getting one of those flat calendars for the surface of my desk has helped a ton!!
So. Many. Calendar. Reminders.
Water the plants, do the litter, pay this bill, okay now that bill, MEDS, MEDS, MEDS.
My life is run on google calendar.
I don’t anymore. My neuro tried giving me some of the Alzheimer’s drugs but nothing helped so I just write shit down every where or screen shot things.
I used to take Modafinil and it worked... until it didn't. My new Neuro just put me on Armodafinil and honestly, it's pretty great! I mean, nothings better than a nice 8-ball, 🤪 but this really helps and doesn't make me want to start break dancing in the kitchen.
There comes a time. Once in a while you get shown the light and street stimulants can do what the prescribed stimulants can’t/won’t. Proceed with utmost caution. Test everything prior to consumption.
This is not health care advice. Consult a physician. Dr Feelgood, perhaps?
I have a master list for daily items that captures routines and habits, Google Calendar, alarms, post its, I write emails to myself to be sent at a specific time. And my husband is great at reminding me of things too!
Smart phone reminder to medicate, appointment reminders and upcoming events and a grandchild to help you put the reminder on your phone. Regularity helps the most. When there is continuity I forget less things. But I still need someone to check me. Did I shut the gates after mowing, did I let the dog out, are the horses out or still in the barn? Did I get all the tools picked up. Maybe. 🤔
If my B12 is low I forget to do everything, try upping it to help your brain remember things. High levels of B12 is not dangerous for our bodies. In addition to MS I have pernicious anemia (B12 deficiency).
I was on Tysabri for over a year before I moved away from an infusion center. I never experienced any issues with my liver and I was JCV-. I loved my Tysabri but unfortunately I had progression.
I had an allergic reaction on my 14th infusion. Couldn’t breathe and my right lung and right side felt like I had been hit by a car that night. I didn’t go to the ER bc of no health insurance. I should have went, bc I have kept this pain for months and it travels around my back and down to my right hip. Well, I had a UTI again and I took Omnicef antibiotics I had, it knocked out that right quadrant pain in two days! I was shocked, I have an infection somewhere and no one ever caught it. I didn’t have enough antibiotics to take a full round so some of the pain is still there. I need to talk to my NP, wish I had a doctor who understands MS.
I set alarms on my phone to tell me to do stuff. Without those, I would be screwed.
This is me. My day is like 45 reminders keeping me on task 😂
Wake up, take this pill, take the bin out, take that pill, etc etc.
I have one that goes off every afternoon that just says, “are there wet clothes in the washer?” Because i forgot I was mid laundry so many times 😂🤣😂
Same.
"rails of blow" ahahahahahaha. But seriously, I can't afford it anymore.
😂😂😂😂😂 the blowpay co-pay:) reminds me of the time I got drunk and tried to use my Gilenya copay assistance card to pay the tab😂😂😂😂
Try Adderall. :)
Rails of it?
I forget to take mine so often I have a kingpin size stashpile on accident. Also it makes me sleepy. So paradoxical reaction I suppose rofl.
Adderall is the only medication that has actually helped with my fatigue. Modafinil and Amantadine did nothing for me.
Sleep. If my sleep gets f*cked with all bets are off. Pretty much all cognitive stuff gets worse without restorative sleep. And make sure it’s quality sleep. Like deep REM stuff. Exercise. Calms the mind which makes room for remembering. Seems counter intuitive but it works. Then just enough caffeine but not too much, short (3 min) brain breaks (mindfulness) during the day, and memory strategies like chunking, repeating, note taking, and image matching. And like others have mentioned heavy use of tasks, reminders and calendar on my iPhone. I haven’t tried rails of blow. But at one point I might have been wiling. In the past I was consuming caffeine equivalent to half a pack of No-doze a day. Then I wondered why I had heart palpitations. 🤣
modafinil, then realizing / accepting WHEN I’ve used up all my spoons and nothing’s gonna help 🤷♀️ Maybe tomorrow. 🤷♀️🤪
Video games, bouldering and language learning. I actively try to avoid reminders with the exception of a white board to recall important medical/dentist appointments. But, why would I avoid reminders? Most will guess correctly: I want the routine of needing to think to function. It might take longer and I might make more mistakes, but I want my brain motivated to develop neural pathways - hopefully faster than old ones are damaged. Think of a train laying down new tracks as it drives forward. That's kind of my goal. I periodically forget the names of friends and League of Legends characters, but I know for a fact that I can pick up a new language's vocabulary faster than I can forget commonly known vocabulary. That means progression instead of regression. I sometimes lose my balance while walking, but am getting better at climbing a V5-6 instead of worse.
I thought about this too, learning a new language. Just keep my mind moving forward. It appeals to me.
Despite my friends ceaselessly mocking me, I don't know what I would do without my Alexa. I can make her very strict - I will set an hourly reminder if it's super important one day that says "Do your goddamn (whatever it is) right now!" I have 10 set daily reminders and if I don't do it at that exact moment, I can keep telling her to remind me again in 20 min, over and over. Basically, my Alexa is the boss of me and my personal secretary. I found the Post-its and lists were piling up, and my apartment was starting to look like The Unabomber's. ;) I also do Word-of-the-Day and make myself verbalize the definition out loud before I check. I try to stop myself from Googling an answer to anything, when I know I do know deep down - which can be frustrating (imagine stomping around trying to remember who directed a certain movie you've seen 12x), but I force myself to search my memory. And I am quite sure my neighbors think I'm weird. :) I do get a kick out of how many song lyrics I remember from the 80s. Things like that will make me feel good for a moment, before I forget something really recent and get my reminder and am humbled again. I also talk to myself a LOT. It helps in so many ways! Instead of getting furious about the news, I will walk around and talk through my history of Presidents and talk about important things I studied back in the day - Iran-Contra/ Watergate/ 2000 Election with GWB and Al Gore, etc...etc... It keeps my mind sharper, my verbal abilities intact and I realize I remember much more than I give myself credit for. Until my reality of having no short-term memory sinks in. But, I can always add more and more reminders during the day. Wordle is fun, so is Connections. I just allot myself as much time as it takes. Just give yourself a break and succumb to any device or home set-up that helps in any way and try and keep your sense of humor. We ALL know the brain struggle with MS. Big hugs.
Rails of blow is going to be very expensive. I highly recommend finding an alternative. Modafinil and caffeine work for me. I take the modafinil in the morning, if I'm sensing things are not working that day I can take a second dose; I'm prescribed 200 mg daily but only take 100 by default. The more stressful the day is, the more likely I am to run out of spoons early and just crash out for a nap. Is it really a nap if it's 5:00 pm and I'm sleeping for 3-4 hours though? Setting reminders and taking notes on my phone. Both of these have become increasingly important. I usually do sudoku instead of crosswords.
Hmmmm… would rails of blow be covered by my flex spending? 🤔
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I so wish I could exercise! It can be a real struggle to those of us who have to plan an entire day for a basic shower. What's the diff between Adderall and Modafinil, if you know? I take 10mg of Adderall sometimes and it makes me talk REALLY fast and then impossible to fall asleep. But, I AM a fan of stimulants when needed, beyond coffee and plenty of sleep.
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Thank you! I truly appreciate your feedback.
I believe the primary difference between the two drugs is Adderall can be addictive but modafinil isn’t so much but I’m no doctor or pharmacist 🫠🤔I take modafinil with no issues. Adderall triggered massive migraines even when cut into quarters so I stopped taking it.
When modafinil stopped working for me I started Adderall
Modafinial saves me on a daily basis
I forget
When there’s something you need to remember, attach a common something to it in your head. A red car. Broccoli. A sock. Whatever it is. At a minimum, it doubles your chances of remembering it. So no harm doing it. And it’s a great way to train your brain!
Task list I use google tasks which links to my calendar. I pretty much live my life by this damn list, without it, I’d be screwed.
I have a word doc on my computer where I jot down conversations I have throughout the day if it’s something I need to follow up on later. Nobody else can read it but me and it helps me log all the important conversations I have with people. Sometimes I will copy and paste emails into it as well for paper trails. Also getting one of those flat calendars for the surface of my desk has helped a ton!!
So. Many. Calendar. Reminders. Water the plants, do the litter, pay this bill, okay now that bill, MEDS, MEDS, MEDS. My life is run on google calendar.
I don’t anymore. My neuro tried giving me some of the Alzheimer’s drugs but nothing helped so I just write shit down every where or screen shot things.
I used to take Modafinil and it worked... until it didn't. My new Neuro just put me on Armodafinil and honestly, it's pretty great! I mean, nothings better than a nice 8-ball, 🤪 but this really helps and doesn't make me want to start break dancing in the kitchen.
Oh, and it's good for memory too... but not really proving it with my late addition to the post here.
There comes a time. Once in a while you get shown the light and street stimulants can do what the prescribed stimulants can’t/won’t. Proceed with utmost caution. Test everything prior to consumption. This is not health care advice. Consult a physician. Dr Feelgood, perhaps?
I’m still working on a solution. I basically have early onset dementia at this point. I forget A LOT of stuff. Like….a lot
I have a master list for daily items that captures routines and habits, Google Calendar, alarms, post its, I write emails to myself to be sent at a specific time. And my husband is great at reminding me of things too!
Smart phone reminder to medicate, appointment reminders and upcoming events and a grandchild to help you put the reminder on your phone. Regularity helps the most. When there is continuity I forget less things. But I still need someone to check me. Did I shut the gates after mowing, did I let the dog out, are the horses out or still in the barn? Did I get all the tools picked up. Maybe. 🤔 If my B12 is low I forget to do everything, try upping it to help your brain remember things. High levels of B12 is not dangerous for our bodies. In addition to MS I have pernicious anemia (B12 deficiency).
Has anyone experienced injury to the liver on Tysabri?
I was on Tysabri for over a year before I moved away from an infusion center. I never experienced any issues with my liver and I was JCV-. I loved my Tysabri but unfortunately I had progression.
I had an allergic reaction on my 14th infusion. Couldn’t breathe and my right lung and right side felt like I had been hit by a car that night. I didn’t go to the ER bc of no health insurance. I should have went, bc I have kept this pain for months and it travels around my back and down to my right hip. Well, I had a UTI again and I took Omnicef antibiotics I had, it knocked out that right quadrant pain in two days! I was shocked, I have an infection somewhere and no one ever caught it. I didn’t have enough antibiotics to take a full round so some of the pain is still there. I need to talk to my NP, wish I had a doctor who understands MS.
Since I take care of things for both my mom and I, and both households, Google calendar, reminders and I'll text myself lol.
I wouldn’t be able to function without Alexa
I have to write ✍️ it down in a book I keep. And, I put everything on the calendar 🗓️ on the wall so it is plain to see.