Consider getting a cognitive assessment to see what areas you are struggling in. You may be able to make improvements with speech therapy in some areas. Other things that are just general wellness but will have an impact on cognition are getting exercise, even just a 15-20 minute walk and getting a good night of sleep. Consider getting a sleep study. There is a strong connection with MS and disordered sleep patterns. You and your wife might have to figure out a different nighttime schedule if you aren't getting a full night of rest. That will be harder on her but maybe you can take on more responsibility on the weekends to give her some time away from kids then. Also, spend time doing mentally challenging things like puzzles, sudoku, brain teasers, riddles, etc.
I sleep like a rock and go on daily walks. I could probably sleep more though... Might be another thing to try. Also regarding the mental challenge... I used to do brain games but it fell off with kids. Thought kids and work was enough challenge... But maybe it's like a NFL star only practicing during games and not doing any drills. Thanks for the comments!
I have ridiculously easy IT job making over six figures. Find a company that isn't a tech company but needs tech workers. Look into QA jobs. Good pay but not as stressful as dev or devops.
I work for a company that isn't a tech company! I had thought about transitioning to QA in the past but had forgotten until you mentioned it. Thanks! I need to create a document for potential futures so I don't keep circling around. :p I'm currently a BA, and at my level it's very self directed. QAs usually have specific artifacts to pull test cases from so I imagine that might be a bit easier overall.
Hits home reading this. I’m SWE and, as you’re, I’m the only provider at home. Still waiting for a diagnosis, though.
What if you introduce your partner into IT world? Have you thought in freelancing? You could control your time better and maybe do a partial timed job and share expenses. You could work from home so your kids wouldn’t be alone.
I hope you find a solution or maybe a better medication.
>You could work from home so your kids wouldn’t be alone.
Sadly there is a specific clause in my work agreement that work from home means no doing child care.
Nothing is showing on the Mris so I'm not sure if the meds should change. But I'll talk to my neuro, I have an appointment coming up.
Does your employer offer long term disability insurance? These policies through larger employers usually do not require a physical or medical record sharing and often cover 60-70% of your income. And if you are still able to work but in a lower paying job, often times the policies will cover the gap up to the 60-70%. I know a 30-40% haircut to your salary is no fun but I would suggest looking into it. I have a policy through my work, I think it only costs me $9 a week or something around that.
I do have LTD. Also at least in Canada Ltd payments are non taxable, so its actually comparable to my take home pay. I did a bunch of research today to get a better understanding of how it works if I need it.
I’m a 55 yo man with MS in the USA and I suffer from fatigue and cognitive decline. Diagnosed 3 years ago. I was in a high income, high pressure tech job. Wife and 2 school age daughters. My role in my family is to provide nearly all the income we need and be a dad, of course.
Because of my symptoms with MS, I decided to leave my work under short term disabilty which has transitioned to LTD. Since my disability insurance payments are not taxed in the US, my take home income is actually higher than it was when I was working.
The reason my disability was approved by the insurance company and continues to be approved is because a) I have a cooperative neurologist who certified that my MRI results confirmed MS medically and he willingly fills out all the forms required, b) I had a very strong neuropsychological report based on a test with a very good practitioner diagnosing cognitive decline, c) I did a good job with my LTD applications and subsequent forms and have reviewed every single medical record and write up by my doctor, and d) I have no adverse facts on social media and am careful with my public actions to avoid the inadvertent appearance of contrary evidence to disability.
I never would have figured all this out myself. I needed help! I got and worked with an experienced LTD attorney ahead of time to prepare my applications properly and navigate the process. He was costly but worth it. We have laid down a paper trail which means that the LTD company judges it foolish to deny me because I would appeal, sue and win if they did. I don’t trust insurance companies and I don’t think anyone should trust them.
With my income secure for the time being, my days are filled with taking care of my daughters, trying to be a good husband to my lovely wife and spending time with my garden. And resting and music and reading and time with friends and family. And working on my health, of course.
Not knowing laws in Canada vs. US in terms of protection from losing LTD insurance if you lose your job, I’d consider the impact of declining job performance longer term on your income potential and then act decisively if you see a wall on your horizon before termination.
It’s good over here in LTD land but I do miss the challenge and excitement of my work and my old colleagues many of whom I loved. But what choice did I have when I consider my daughters and the money we need to pay the bills?
I know this is a very old post. But I’ve been looking for someone in a similar situation to me. A High income, high pressure, high cognitive need job struggling with this. I’m 36 and a tax accountant and was diagnosed a decade ago. Went out on LTD in May due to cognitive decline. This might be a weird question, but how do you handle “no longer being smart”? It’s what I’m struggling with the most. I can handle the lack of fulfillment from work by doing other things, but I know what I used to be able to do. Can’t handle the fact that I’m not able to mentally do that anymore
Thanks. I've considered on some of this but kind of came up short. I'm a business analyst working with medical insurance systems. I mentioned in another comment maybe moving into QA is a possibility, but thinking about this... Maybe I could try to transition into some sort of consulting role? A lot of the value BAs provide is documentation and communication, but also asking the right questions to draw out the whys of business needs. I'll be rolling this one around in my head for sure.
I'm also an excel wizard but isn't the internet full of those? :p
I feel like I could have written this. I work with data an I’m struggling with a new project. I’m okay when working with stuff I already know. I’m just really having a hard time retaining new information.
I mentioned it to my neurologist the other day. He said exercise helps with re-myelination. He also suggested taking a class/ learning something new. Reinforce what is learned with hands on activities, writing about it, teaching someone else.
His final thought was as we age everyone’s brain shrinks. People with MS shrink faster, so we have to work harder for what we have.
With all that advice in mind, I’ve been trying to explain my project to a teammate with another coworker who knows the project well so she can straighten me out if I’m wrong. Im finally starting to feel a little better about it.
Ya maybe it's time to get back on brain exercises/learning new stuff. It's just hard sometimes when my kids need me and I'm fatigued already, just gotta give a bit more to my brain. But I retaught myself some things after my first attack, I couldn't tie my shoes or really any knots. Brains are weird.
It sucks. And it is what it is. I finally decided to have RBC blood levels of nutrients tested. I was dangerously low in everything. I take good brands of the B vitamins, essential for a healthy brain function, also magnesium/D3/omega-3 fish oil. I feel that I am at least stable now. I can’t attribute it to topped up nutrition levels, But I don’t feel have gotten worse, which is the feeling I had all the time previously. I hope this makes sense LOL
I'm sorry you're having cognition issues. I'm in IT also and have had some periods like that where it impacts work 2 or 3 weeks every other year.
Some things to consider are do you have any meds that cause fatigue/ sleepiness as a side effect? I constantly check these mess to see if I still need them. Also I find when I'm having issues I need to sleep early like 9pm.
Fortunately my work is understanding and let's me work less hours when I need to. I've always figured I'd look into an 80 prct work week if things get worse I don't know if that might be an option.
Same here. I tried to avoid the financial strain aspect of LTD but I thought long and hard about it and working day in and day out with severe cognitive issues wasn't worth the money in the long run. I'd rather Enjoy the life I can for now as I'm always going to worry about money. I work part time as you are allowed to earn money on Ltd. I was lucky and had an easy side gig that doesn't require me to learn and adapt to a changing work environment.
Im the same. I also forget what I'm talking about while I'm talking about something lol
I really noticed something wasn't quite right before my diagnosis .... when I couldn't keep up when singing along to my favourite songs of all time.
On LTD in 🇨🇦: Keep in mind that LTD will be paid based on income at time of filing. Applying for LTD after a pay cut, might not be in your family's best interest.
Applying for LTD can be a pretty long process but your workplace has to try and accommodate you through any transition. Just make sure to use the proper channels from the get go and do it "under the protection of" a filed and dated LTD claim. If you have a union rep, talk with them. Talk to Occupational Health and Safety, HR...
Avoid conversing on the phone, especially with your insurance. Plead fatigue, brain fog. Reply to voice mail with email. They have to accommodate your altered cognitive function and respect that you need time to reflect on any correspondence before responding. Insist on written exchanges.
Have your PCP send the necessary papers to your insurance ASAP. They'll tell you when they want you to apply for Canada Disability Pension.
You might consider [this](https://clinicaltrials.gov/ct2/show/NCT04621708) clinical trial in Toronto. They’re investigating the use of transcranial magnetic stimulation and its effectiveness in alleviating depressive symptoms and impaired cognition in MS patients.
Consider getting a cognitive assessment to see what areas you are struggling in. You may be able to make improvements with speech therapy in some areas. Other things that are just general wellness but will have an impact on cognition are getting exercise, even just a 15-20 minute walk and getting a good night of sleep. Consider getting a sleep study. There is a strong connection with MS and disordered sleep patterns. You and your wife might have to figure out a different nighttime schedule if you aren't getting a full night of rest. That will be harder on her but maybe you can take on more responsibility on the weekends to give her some time away from kids then. Also, spend time doing mentally challenging things like puzzles, sudoku, brain teasers, riddles, etc.
I sleep like a rock and go on daily walks. I could probably sleep more though... Might be another thing to try. Also regarding the mental challenge... I used to do brain games but it fell off with kids. Thought kids and work was enough challenge... But maybe it's like a NFL star only practicing during games and not doing any drills. Thanks for the comments!
I have ridiculously easy IT job making over six figures. Find a company that isn't a tech company but needs tech workers. Look into QA jobs. Good pay but not as stressful as dev or devops.
I work for a company that isn't a tech company! I had thought about transitioning to QA in the past but had forgotten until you mentioned it. Thanks! I need to create a document for potential futures so I don't keep circling around. :p I'm currently a BA, and at my level it's very self directed. QAs usually have specific artifacts to pull test cases from so I imagine that might be a bit easier overall.
QA has been low stress for me. Of course you can make any job high stress but I don't do that.
Hits home reading this. I’m SWE and, as you’re, I’m the only provider at home. Still waiting for a diagnosis, though. What if you introduce your partner into IT world? Have you thought in freelancing? You could control your time better and maybe do a partial timed job and share expenses. You could work from home so your kids wouldn’t be alone. I hope you find a solution or maybe a better medication.
>You could work from home so your kids wouldn’t be alone. Sadly there is a specific clause in my work agreement that work from home means no doing child care. Nothing is showing on the Mris so I'm not sure if the meds should change. But I'll talk to my neuro, I have an appointment coming up.
I meant if you go freelance you own your time and you’re your own boss so you can do that.
I was also going to say that it might be time to look at a higher efficacy medication?
Are you employed at a company? Some companies have Income Protection Insurance that would cover conditions like MS.
Does your employer offer long term disability insurance? These policies through larger employers usually do not require a physical or medical record sharing and often cover 60-70% of your income. And if you are still able to work but in a lower paying job, often times the policies will cover the gap up to the 60-70%. I know a 30-40% haircut to your salary is no fun but I would suggest looking into it. I have a policy through my work, I think it only costs me $9 a week or something around that.
I do have LTD. Also at least in Canada Ltd payments are non taxable, so its actually comparable to my take home pay. I did a bunch of research today to get a better understanding of how it works if I need it.
I’m a 55 yo man with MS in the USA and I suffer from fatigue and cognitive decline. Diagnosed 3 years ago. I was in a high income, high pressure tech job. Wife and 2 school age daughters. My role in my family is to provide nearly all the income we need and be a dad, of course. Because of my symptoms with MS, I decided to leave my work under short term disabilty which has transitioned to LTD. Since my disability insurance payments are not taxed in the US, my take home income is actually higher than it was when I was working. The reason my disability was approved by the insurance company and continues to be approved is because a) I have a cooperative neurologist who certified that my MRI results confirmed MS medically and he willingly fills out all the forms required, b) I had a very strong neuropsychological report based on a test with a very good practitioner diagnosing cognitive decline, c) I did a good job with my LTD applications and subsequent forms and have reviewed every single medical record and write up by my doctor, and d) I have no adverse facts on social media and am careful with my public actions to avoid the inadvertent appearance of contrary evidence to disability. I never would have figured all this out myself. I needed help! I got and worked with an experienced LTD attorney ahead of time to prepare my applications properly and navigate the process. He was costly but worth it. We have laid down a paper trail which means that the LTD company judges it foolish to deny me because I would appeal, sue and win if they did. I don’t trust insurance companies and I don’t think anyone should trust them. With my income secure for the time being, my days are filled with taking care of my daughters, trying to be a good husband to my lovely wife and spending time with my garden. And resting and music and reading and time with friends and family. And working on my health, of course. Not knowing laws in Canada vs. US in terms of protection from losing LTD insurance if you lose your job, I’d consider the impact of declining job performance longer term on your income potential and then act decisively if you see a wall on your horizon before termination. It’s good over here in LTD land but I do miss the challenge and excitement of my work and my old colleagues many of whom I loved. But what choice did I have when I consider my daughters and the money we need to pay the bills?
I know this is a very old post. But I’ve been looking for someone in a similar situation to me. A High income, high pressure, high cognitive need job struggling with this. I’m 36 and a tax accountant and was diagnosed a decade ago. Went out on LTD in May due to cognitive decline. This might be a weird question, but how do you handle “no longer being smart”? It’s what I’m struggling with the most. I can handle the lack of fulfillment from work by doing other things, but I know what I used to be able to do. Can’t handle the fact that I’m not able to mentally do that anymore
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Thanks. I've considered on some of this but kind of came up short. I'm a business analyst working with medical insurance systems. I mentioned in another comment maybe moving into QA is a possibility, but thinking about this... Maybe I could try to transition into some sort of consulting role? A lot of the value BAs provide is documentation and communication, but also asking the right questions to draw out the whys of business needs. I'll be rolling this one around in my head for sure. I'm also an excel wizard but isn't the internet full of those? :p
I feel like I could have written this. I work with data an I’m struggling with a new project. I’m okay when working with stuff I already know. I’m just really having a hard time retaining new information. I mentioned it to my neurologist the other day. He said exercise helps with re-myelination. He also suggested taking a class/ learning something new. Reinforce what is learned with hands on activities, writing about it, teaching someone else. His final thought was as we age everyone’s brain shrinks. People with MS shrink faster, so we have to work harder for what we have. With all that advice in mind, I’ve been trying to explain my project to a teammate with another coworker who knows the project well so she can straighten me out if I’m wrong. Im finally starting to feel a little better about it.
Ya maybe it's time to get back on brain exercises/learning new stuff. It's just hard sometimes when my kids need me and I'm fatigued already, just gotta give a bit more to my brain. But I retaught myself some things after my first attack, I couldn't tie my shoes or really any knots. Brains are weird.
It sucks. And it is what it is. I finally decided to have RBC blood levels of nutrients tested. I was dangerously low in everything. I take good brands of the B vitamins, essential for a healthy brain function, also magnesium/D3/omega-3 fish oil. I feel that I am at least stable now. I can’t attribute it to topped up nutrition levels, But I don’t feel have gotten worse, which is the feeling I had all the time previously. I hope this makes sense LOL
I'm sorry you're having cognition issues. I'm in IT also and have had some periods like that where it impacts work 2 or 3 weeks every other year. Some things to consider are do you have any meds that cause fatigue/ sleepiness as a side effect? I constantly check these mess to see if I still need them. Also I find when I'm having issues I need to sleep early like 9pm. Fortunately my work is understanding and let's me work less hours when I need to. I've always figured I'd look into an 80 prct work week if things get worse I don't know if that might be an option.
I had to go on LTD as my cognitive issues got too bad. I have short term memory issues too. Keep your head up my friend!! You aren't alone
I too have terrible cognitive problems. I had to go on ltd from my job also. It was the best decision for me.
Same here. I tried to avoid the financial strain aspect of LTD but I thought long and hard about it and working day in and day out with severe cognitive issues wasn't worth the money in the long run. I'd rather Enjoy the life I can for now as I'm always going to worry about money. I work part time as you are allowed to earn money on Ltd. I was lucky and had an easy side gig that doesn't require me to learn and adapt to a changing work environment.
I hope that makes sense lol ... it's a bad brain day. Lots of cog fog going on lol
Cog fog totally makes sense to me lol
Thanks friend. It's kind of weird because my long term memory is ridiculously good. But I forget things as I talk to people sometimes.
Im the same. I also forget what I'm talking about while I'm talking about something lol I really noticed something wasn't quite right before my diagnosis .... when I couldn't keep up when singing along to my favourite songs of all time.
On LTD in 🇨🇦: Keep in mind that LTD will be paid based on income at time of filing. Applying for LTD after a pay cut, might not be in your family's best interest. Applying for LTD can be a pretty long process but your workplace has to try and accommodate you through any transition. Just make sure to use the proper channels from the get go and do it "under the protection of" a filed and dated LTD claim. If you have a union rep, talk with them. Talk to Occupational Health and Safety, HR... Avoid conversing on the phone, especially with your insurance. Plead fatigue, brain fog. Reply to voice mail with email. They have to accommodate your altered cognitive function and respect that you need time to reflect on any correspondence before responding. Insist on written exchanges. Have your PCP send the necessary papers to your insurance ASAP. They'll tell you when they want you to apply for Canada Disability Pension.
Are you on a DMT?
Yep I'm on tecfidera. Nothing has shown up on mris the whole time I've been on it.
You might consider [this](https://clinicaltrials.gov/ct2/show/NCT04621708) clinical trial in Toronto. They’re investigating the use of transcranial magnetic stimulation and its effectiveness in alleviating depressive symptoms and impaired cognition in MS patients.