Aa
So, do you have a plan if things get worse?
That was the unexpected question I got from the NP when I went in last week for all day testing. Kevin, my most favorite NP talked to me at length about what I need to start thinking and doing RIGHT NOW to ensure that I have a plan in place and a foundation of support built before things get worse.
I don't know how many of you all have had that conversation with a medical professional who knows about your condition, but I expected that I would be the one to eventually bring it up, not them. I guess I got lucky because someone took to time and cared enough to do that for me.
He made so many important points about how none of us really don't know for sure if our decline will be slow or if it will happen quickly and the more ground work done now would pay off when that time comes.
If we don't already have a health page about that this, I think it would definitely be worthwhile putting together. I've seen different issues brought up in past posts, but if we could tie them all together that would be great.
In the meantime, I will take the suggestions given and start laying that foundation.
One suggestion he made was to talk to my PCP now. Talk about how there will come a time when I will have to stop working, hopefully not for many years, but that I will need to know if they will be there to help me through the disability process.
If anyone else has suggestions of what we can do beforehand, please add it to this post. If you have been through this process and have suggestions that you think would help, please let us know. Eventually, to some extent, we will all face these issues and it is so much better not to have to reinvent the wheel.
Thanks and hope you are all doing well today.
Julie
I don't know how many of you all have had that conversation with a medical professional who knows about your condition, but I expected that I would be the one to eventually bring it up, not them. I guess I got lucky because someone took to time and cared enough to do that for me.
He made so many important points about how none of us really don't know for sure if our decline will be slow or if it will happen quickly and the more ground work done now would pay off when that time comes.
If we don't already have a health page about that this, I think it would definitely be worthwhile putting together. I've seen different issues brought up in past posts, but if we could tie them all together that would be great.
In the meantime, I will take the suggestions given and start laying that foundation.
One suggestion he made was to talk to my PCP now. Talk about how there will come a time when I will have to stop working, hopefully not for many years, but that I will need to know if they will be there to help me through the disability process.
If anyone else has suggestions of what we can do beforehand, please add it to this post. If you have been through this process and have suggestions that you think would help, please let us know. Eventually, to some extent, we will all face these issues and it is so much better not to have to reinvent the wheel.
Thanks and hope you are all doing well today.
Julie
These are all excellent ideas and suggestions. I wonder if we have enough to start a Health Page from it.
I get the MSQR, which comes out every quarter. If you are an MS registry patient, you get this magazine automatically. Anyway, it has a great article, long and indepth at that, on applying for disability. It gives step-by-step on what you need to do and how to put together your supporting documenation. I would he happy to scan the article and send it to anyone who is interested in reading it. Send me a PM if interested.
Julie
I get the MSQR, which comes out every quarter. If you are an MS registry patient, you get this magazine automatically. Anyway, it has a great article, long and indepth at that, on applying for disability. It gives step-by-step on what you need to do and how to put together your supporting documenation. I would he happy to scan the article and send it to anyone who is interested in reading it. Send me a PM if interested.
Julie
Great topic as always my contribution is advice from a book I read about MS and Your Feelings these are not the exact words but close enough:
Take a sheet of paper and draw concentric circles, in the middle put yourself, in the next circle put 3 close people in your life who can look after you / do things for you if you need them to. In the next circle put 3-5 people from your extended family/neighbors you can call on if the inner circle are not available. In the next circle put doctors/medics who can help you with and in the outer circle put the name of organizations in the community who you can turn to for advice or help. If you don't know them now, then find out who they are and contact numbers
This is a scary thing to do as your circle often shrinks when you have a disability but it is important that you keep those circles full. We rely a lot on specific people in our lives and sometimes we need to share that burden around a little more as health declines.
Stay well
Pat x.
Take a sheet of paper and draw concentric circles, in the middle put yourself, in the next circle put 3 close people in your life who can look after you / do things for you if you need them to. In the next circle put 3-5 people from your extended family/neighbors you can call on if the inner circle are not available. In the next circle put doctors/medics who can help you with and in the outer circle put the name of organizations in the community who you can turn to for advice or help. If you don't know them now, then find out who they are and contact numbers
This is a scary thing to do as your circle often shrinks when you have a disability but it is important that you keep those circles full. We rely a lot on specific people in our lives and sometimes we need to share that burden around a little more as health declines.
Stay well
Pat x.
Been through this with Mom, Dad, Loretta's brother, her Mom & Dad, Loretta herself, multiple parishioners... Seems like I'm missing somebody.
Anyway, all excellent advice in this thread.
Most importantly, regarding those end-of-life questions, TALK IT THROUGH with ALL family/SO's who might think they know the right thing to do when the time comes. You want them all on the same page, and you want to pick the page. You don't want your spouse, kids, & siblings all mad at each other when you need their help. After you're gone, it's their problem, but you'd surely feel better knowing they knew your wishes.
Once you decide your parameters and principles, make sure you explain these to your loved ones, so your wishes are clear. And, DO IT SOON! You might not be able to express those wishes when the time comes.
Anybody who wishes is always free to ask me anything privately, too. Some have, and I am happy to help, if sometimes slow to respond.
God bless.
Anyway, all excellent advice in this thread.
Most importantly, regarding those end-of-life questions, TALK IT THROUGH with ALL family/SO's who might think they know the right thing to do when the time comes. You want them all on the same page, and you want to pick the page. You don't want your spouse, kids, & siblings all mad at each other when you need their help. After you're gone, it's their problem, but you'd surely feel better knowing they knew your wishes.
Once you decide your parameters and principles, make sure you explain these to your loved ones, so your wishes are clear. And, DO IT SOON! You might not be able to express those wishes when the time comes.
Anybody who wishes is always free to ask me anything privately, too. Some have, and I am happy to help, if sometimes slow to respond.
God bless.
I just want to add my voice to the chorus saying this is a great thing to bring up even though no one really wants to look at. I don't have anything new to add, but want to say thanks to everybody for much food for thought.
I see myself taking the tack of ignoring this topic. I think I just assume that since my physical decline has happened slowly up to this point, it will continue to move slowly and I will have plenty of time to figure out my next more even though we live in a house that is not accessible and could not practically be made so.
However, what actually started to unexpectedly reach a danger point for me last fall were mental issues, the fatigue and cog fog. I was much less effective at work and am only fortunate that I am in a job where I am not closely monitored and no one was likely to notice my falling productivity very quickly. This was made worse by the fact that the very problems of fatigue and cog fog made it difficult for me to perceive the extent of their impact clearly until they got undeniably bad. Even then, I couldn't seem to muster the oomph to do much about them. When your brain fails you, how do you bootstrap yourself out of that fog? So suddenly I could see a much quicker end to my participation in the work forces than I had anticipated.
I guess it's a reminder that MS really is unpredictable and that we all should have contingency plans.
sho
I see myself taking the tack of ignoring this topic. I think I just assume that since my physical decline has happened slowly up to this point, it will continue to move slowly and I will have plenty of time to figure out my next more even though we live in a house that is not accessible and could not practically be made so.
However, what actually started to unexpectedly reach a danger point for me last fall were mental issues, the fatigue and cog fog. I was much less effective at work and am only fortunate that I am in a job where I am not closely monitored and no one was likely to notice my falling productivity very quickly. This was made worse by the fact that the very problems of fatigue and cog fog made it difficult for me to perceive the extent of their impact clearly until they got undeniably bad. Even then, I couldn't seem to muster the oomph to do much about them. When your brain fails you, how do you bootstrap yourself out of that fog? So suddenly I could see a much quicker end to my participation in the work forces than I had anticipated.
I guess it's a reminder that MS really is unpredictable and that we all should have contingency plans.
sho
I think this is a great thing to talk about, even though it is something most of us don't want to contemplate. I think having a Health Page addressing all the aspects involved would be a wonderful thing. Here's my two cents, on some of the medical issues ....
First off, I think it is incredibly important to have a Family Physician that can get to know you as a person, and who's opinions you respect and trust ... someone who treats your medical care as a team effort. This is the person who will end up guiding you thru the health care system, for lack of a better word. I have been so blessed, because my Family Physician is awesome - there is much mutual respect, and I can talk to him about anything.
He is the one who finally told me that my working days were done. He had watched me push and push myself, and he knew I would continue to do so ... and he flat out told me I hadn't done myself any favors in the long run. So he knew this was something I desperately DIDN'T want, and he was then behind me and helping me thru the disability process. That was an invaluable resource for me.
The other big thing I would recommend is to have your Living Will and Durable Power of Attorney for Healthcare completed, and to then discuss your wishes with your physicians and your family members. I know it seems like kind of a ghoulish thing, but after spending 25 years in the medical field, I know all too well that it isn't something you want to leave for others to decide.
There is a WONDERFUL publication on the Aging With Dignity website, called "5 Wishes", that walks you thru the choices and decisions in a very clear, non "legalese" way. It cost me $5 or $10 dollars, and in alot of states, if you fill it out and sign it, it is a legal document. It is not legal in my state, so I filled out the necessary documents - but I also have a copy of this with them, so things are explained even easier to family members. You can also get another booklet that walks you thru how to talk to your doctors and family members about the issues.
When I talked about this with my family doc, he actually brought up some scenarios that I hadn't thought of - he was going thru this very issue with his mom at the time. He was able to give me a different perspective as the family member, and I was able to give him more insight into the choices from the patient side. Because of our conversation, I actually met with someone from hospice, to find out what legal choices I could make in different situations, if I was still fine mentally.
Obviously, I hope to never need to use these documents, but it brings me much peace to know I have a plan should the time come. I am absolutely not a pessimist, but I am a realist ... :) Since I am on Tysabri, and have numerous issues that play in, I am well aware that things could go bad six ways till Sunday, and they could go bad fast. I feel very strongly about quality of life vs. simply being alive, and have tried to anticipate possibilities and have made decisions, so that my family will not have to carry that burden if the time ever comes.
I think it is also important to talk to your family about these issues, whether they want to hear it or not. I corraled everyone at Christmas time, since they were all actually here at the same time. This way, everyone heard the same thing at the same time, and can be on the same page. I explained what my choices will be, and why, and I kept the conversation as light and matter of fact as possible. Nobody was too thrilled to hear any of this, but I strongly feel that it is a gift I am giving them if that day ever comes. It takes the burden of decision making off them, and it also helped them to understand the choices I have made.
As far as SS disability, I was approved just before Christmas. It was a first time application, and I did not use an attorney. There are some helpful things I learned in the process. One big thing is that if you are thinking you may have to do this, be sure that you have documentation that you are regularly seen by a physician regarding your MS or resultant issues. Applying for SS disability is an overwhelming process at times, with a ton of paperwork and documentation necessary - the thing is to be as detailed as possible and to have as much proof as possible to show them what issues you have.
I think this topic of preparing for our futures is helpful to all of us, because differnt people here are bringing up different things to think about. And there certainly are many aspects to this issue ... :)
Rita
First off, I think it is incredibly important to have a Family Physician that can get to know you as a person, and who's opinions you respect and trust ... someone who treats your medical care as a team effort. This is the person who will end up guiding you thru the health care system, for lack of a better word. I have been so blessed, because my Family Physician is awesome - there is much mutual respect, and I can talk to him about anything.
He is the one who finally told me that my working days were done. He had watched me push and push myself, and he knew I would continue to do so ... and he flat out told me I hadn't done myself any favors in the long run. So he knew this was something I desperately DIDN'T want, and he was then behind me and helping me thru the disability process. That was an invaluable resource for me.
The other big thing I would recommend is to have your Living Will and Durable Power of Attorney for Healthcare completed, and to then discuss your wishes with your physicians and your family members. I know it seems like kind of a ghoulish thing, but after spending 25 years in the medical field, I know all too well that it isn't something you want to leave for others to decide.
There is a WONDERFUL publication on the Aging With Dignity website, called "5 Wishes", that walks you thru the choices and decisions in a very clear, non "legalese" way. It cost me $5 or $10 dollars, and in alot of states, if you fill it out and sign it, it is a legal document. It is not legal in my state, so I filled out the necessary documents - but I also have a copy of this with them, so things are explained even easier to family members. You can also get another booklet that walks you thru how to talk to your doctors and family members about the issues.
When I talked about this with my family doc, he actually brought up some scenarios that I hadn't thought of - he was going thru this very issue with his mom at the time. He was able to give me a different perspective as the family member, and I was able to give him more insight into the choices from the patient side. Because of our conversation, I actually met with someone from hospice, to find out what legal choices I could make in different situations, if I was still fine mentally.
Obviously, I hope to never need to use these documents, but it brings me much peace to know I have a plan should the time come. I am absolutely not a pessimist, but I am a realist ... :) Since I am on Tysabri, and have numerous issues that play in, I am well aware that things could go bad six ways till Sunday, and they could go bad fast. I feel very strongly about quality of life vs. simply being alive, and have tried to anticipate possibilities and have made decisions, so that my family will not have to carry that burden if the time ever comes.
I think it is also important to talk to your family about these issues, whether they want to hear it or not. I corraled everyone at Christmas time, since they were all actually here at the same time. This way, everyone heard the same thing at the same time, and can be on the same page. I explained what my choices will be, and why, and I kept the conversation as light and matter of fact as possible. Nobody was too thrilled to hear any of this, but I strongly feel that it is a gift I am giving them if that day ever comes. It takes the burden of decision making off them, and it also helped them to understand the choices I have made.
As far as SS disability, I was approved just before Christmas. It was a first time application, and I did not use an attorney. There are some helpful things I learned in the process. One big thing is that if you are thinking you may have to do this, be sure that you have documentation that you are regularly seen by a physician regarding your MS or resultant issues. Applying for SS disability is an overwhelming process at times, with a ton of paperwork and documentation necessary - the thing is to be as detailed as possible and to have as much proof as possible to show them what issues you have.
I think this topic of preparing for our futures is helpful to all of us, because differnt people here are bringing up different things to think about. And there certainly are many aspects to this issue ... :)
Rita
One more thing I remember the NP suggesting is that I could call the county and get a social worker assigned to me even now. That person could come out do an eval and keep up with me from time to time. I worked as a social worker previously and this was a very integral part of my caseload, keeping up with people who had chronic illness.
Anyway, his rationale was that I would be followed by a professional and that would help down the road with establishing a decline of health over time for supporting a disability claim.
I don't know how I feel about doing this because I don't feel I need this kind of follow-on and I know the caseloads of social workers, but it was a suggestion that was made that might help someone else here.
Let's keep the ideas coming....
Julie
Anyway, his rationale was that I would be followed by a professional and that would help down the road with establishing a decline of health over time for supporting a disability claim.
I don't know how I feel about doing this because I don't feel I need this kind of follow-on and I know the caseloads of social workers, but it was a suggestion that was made that might help someone else here.
Let's keep the ideas coming....
Julie
COMMUNITY LEADER
Very necessary, yet uncomfortable topic, how we like to tackle the tricky q's!
I've abandoned a few posts on this, i'm the optimist so i dont go to the bad what if's, i see the good even in the very very bad, its how i am. This though has turned my way of thinking on its head, only way i can get my self to think bad what ifs, is to make it seem positive. So its a good thing to have thought of a plan, not that you'll ever need it, but it would be bad to not have a plan, so be positive and come up with a plan. I'm even playing games with my self lol!
So far my plan is to get someone to notice i'm gone, that sounds wrong, it took 3 days for anyone to realise something was wrong last time, i couldnt stay awake, couldnt communicate when i was awake and when they did realise everyone waited for me to tell them what to do. I'm not the right person to make descisions then, i cant think beyond sleep, eat, pee and some one has to notice for me. So thats going to happen if i do go back to that place again.
I'm already getting fresh fruit and veg delivered everyweek, i also get milk, bread, eggs and bacon twice a week, and dh calls to find out if i need other things, he gets everything at the moment and i dont know what i'd do if he didnt. I cant shop or drive but if i had to i'd go on line and order it in.
The other things are getting my kids ready for life, i find i'm thinking its got to be now not the life time i thought i'd have, still focused on them more than me. Trying to get my youngest into a new science, math and technology select entry school, 3 years before he's age appropriate. He's ready but i have to convince the powers that be, to just let him test in and he'll show them he's ready. I cant home school him, fact i need to address very soon.
OMG it sounds like i'm preparing for death, its not that at all though it sounds like it, i think i have been preparing them for a time when i can not do ME anymore, not death persay, more not able to be the active, explain everything, tollerant, dependable mum that they expect me to be. 2009 was a wake up call for not only me but them too, they are getting independant through necessity, rather than wanting too.
Speaking of being dead, i have a promise from my dh that even if thats in 20 years time and i still do not have a dx (what a thought lol) they will find it in autopsy, nice lol Oh and my dd the other day said i remembered what you said years ago about not wanting to be on life support, i think she plans on flipping the switch, must make sure dh knows or she'll flip the switch before she should, not that i'm thinking that would happen but you never know i could get hit by a bus.
I'll stop now, i do have plans of sorts but they dont cover income, change of house, health insurance etc. its all important but i'm not ready to get into it, i suppose the biggest is still being involved in our family life, making little changes so that i can still be involved, laying down good memories. I'm not sure i stayed on topic lol
Cheers..........JJ
I've abandoned a few posts on this, i'm the optimist so i dont go to the bad what if's, i see the good even in the very very bad, its how i am. This though has turned my way of thinking on its head, only way i can get my self to think bad what ifs, is to make it seem positive. So its a good thing to have thought of a plan, not that you'll ever need it, but it would be bad to not have a plan, so be positive and come up with a plan. I'm even playing games with my self lol!
So far my plan is to get someone to notice i'm gone, that sounds wrong, it took 3 days for anyone to realise something was wrong last time, i couldnt stay awake, couldnt communicate when i was awake and when they did realise everyone waited for me to tell them what to do. I'm not the right person to make descisions then, i cant think beyond sleep, eat, pee and some one has to notice for me. So thats going to happen if i do go back to that place again.
I'm already getting fresh fruit and veg delivered everyweek, i also get milk, bread, eggs and bacon twice a week, and dh calls to find out if i need other things, he gets everything at the moment and i dont know what i'd do if he didnt. I cant shop or drive but if i had to i'd go on line and order it in.
The other things are getting my kids ready for life, i find i'm thinking its got to be now not the life time i thought i'd have, still focused on them more than me. Trying to get my youngest into a new science, math and technology select entry school, 3 years before he's age appropriate. He's ready but i have to convince the powers that be, to just let him test in and he'll show them he's ready. I cant home school him, fact i need to address very soon.
OMG it sounds like i'm preparing for death, its not that at all though it sounds like it, i think i have been preparing them for a time when i can not do ME anymore, not death persay, more not able to be the active, explain everything, tollerant, dependable mum that they expect me to be. 2009 was a wake up call for not only me but them too, they are getting independant through necessity, rather than wanting too.
Speaking of being dead, i have a promise from my dh that even if thats in 20 years time and i still do not have a dx (what a thought lol) they will find it in autopsy, nice lol Oh and my dd the other day said i remembered what you said years ago about not wanting to be on life support, i think she plans on flipping the switch, must make sure dh knows or she'll flip the switch before she should, not that i'm thinking that would happen but you never know i could get hit by a bus.
I'll stop now, i do have plans of sorts but they dont cover income, change of house, health insurance etc. its all important but i'm not ready to get into it, i suppose the biggest is still being involved in our family life, making little changes so that i can still be involved, laying down good memories. I'm not sure i stayed on topic lol
Cheers..........JJ
Plan for the worst hope for the best
It is too late for me to get disability, I have not been in the work force in the last few years.
I am decluttering the house. Simplifying.
I put money into needed updates to the house last year when I saw where the diagnosis was headed.
I am planning for the time I can't drive. The issue is I do not live in an area with a great transit system. Cabs are still cheaper than yearly up keep of a car.
I have an annuity and an IRA of my own.
I am working on getting my legal things in order. Will, living will, power of attorney, donating my body MS research. In my state you do not have to have a lawyer. You can get the forms from the state attorney general and have to witnesses and a notary.
I have had the discussion with one health professional about my wishes and what I can abide and can't abide. This is a different conversation for each of us because of our individual beliefs.
Alex
It is too late for me to get disability, I have not been in the work force in the last few years.
I am decluttering the house. Simplifying.
I put money into needed updates to the house last year when I saw where the diagnosis was headed.
I am planning for the time I can't drive. The issue is I do not live in an area with a great transit system. Cabs are still cheaper than yearly up keep of a car.
I have an annuity and an IRA of my own.
I am working on getting my legal things in order. Will, living will, power of attorney, donating my body MS research. In my state you do not have to have a lawyer. You can get the forms from the state attorney general and have to witnesses and a notary.
I have had the discussion with one health professional about my wishes and what I can abide and can't abide. This is a different conversation for each of us because of our individual beliefs.
Alex
This is SUCH an important question!!!!!!
That's wonderful it was brought up to you - like you, it's something I thought I'd have to bring up when/if the time comes.
Heck, I don't even know how to bring this up to my hubby let alone give advice about it. So, count me in to help gather what we need for our plan. I do think for starters this list can be general to-do's (now's and later's); once we finalize a working HP we can then tailor it for those who's plan needs to be enacted immediately.
The Plan: {To do Prep-List should things get worse}
~NOW
-tasks
-short term goals/planning
-long term goals/planning
~NEXT STEPS
Great topic and so important, thank you for bringing this up!
-shell
That's wonderful it was brought up to you - like you, it's something I thought I'd have to bring up when/if the time comes.
Heck, I don't even know how to bring this up to my hubby let alone give advice about it. So, count me in to help gather what we need for our plan. I do think for starters this list can be general to-do's (now's and later's); once we finalize a working HP we can then tailor it for those who's plan needs to be enacted immediately.
The Plan: {To do Prep-List should things get worse}
~NOW
-tasks
-short term goals/planning
-long term goals/planning
~NEXT STEPS
Great topic and so important, thank you for bringing this up!
-shell
Stupid question - once we are diagnosed, is it possible to qualify for disability insurance? Would any insurance company even cover us?
This is an excellent topic, uncomfortable yes but something we all probably need to look at.
I must admit I haven't thought a great deal about it in the past but will start to.
I did replace my bathtub with a walk in shower recently but I suppose I should start thinking about where I am living.
My apartment is on the second floor (we say second floor here in the UK, in the States you would say third!) I was trapped in there for several weeks towards the end of last year when I had quite a bad relapse. That situation obviously needs to be adressed.
Thank you Julie for giving us this food for thought.
Mand
I must admit I haven't thought a great deal about it in the past but will start to.
I did replace my bathtub with a walk in shower recently but I suppose I should start thinking about where I am living.
My apartment is on the second floor (we say second floor here in the UK, in the States you would say third!) I was trapped in there for several weeks towards the end of last year when I had quite a bad relapse. That situation obviously needs to be adressed.
Thank you Julie for giving us this food for thought.
Mand
This truly is a great topic, and we do need to have a health page on it.
My husband is the one that thinks about this, OFTEN. He went back to school to get a Masters degree (he is 1/2 way through at the time), do be more marketable if he gets laid off again, and most importantly to keep out health insurance going for me.
I know if we lose insurance and then cobra, I will be uninsurable.
His next plan when he is done with school is to either start figuring out how to build on to our home, to make is "handicap" accesible with a bed/bath on the 1st floor. If not, to start looking for a ranch in out town.
He is slowly watching me turn into my mother, and wants to plan ahead for the future. I get annoyed and angry, which I know comes from sadness. He is thinking ahead and I am stubborn and want things to stay the same, if not improve. It is wishful thinking, I know.
It is too late for me to get any disability from work, as my full time work, ended many years ago. I only work 2 days a week at this point, if that. I am not a very reliable employee any longer.
This is a good thread. I am glad your neuro brought this up Julie.
Michelle
My husband is the one that thinks about this, OFTEN. He went back to school to get a Masters degree (he is 1/2 way through at the time), do be more marketable if he gets laid off again, and most importantly to keep out health insurance going for me.
I know if we lose insurance and then cobra, I will be uninsurable.
His next plan when he is done with school is to either start figuring out how to build on to our home, to make is "handicap" accesible with a bed/bath on the 1st floor. If not, to start looking for a ranch in out town.
He is slowly watching me turn into my mother, and wants to plan ahead for the future. I get annoyed and angry, which I know comes from sadness. He is thinking ahead and I am stubborn and want things to stay the same, if not improve. It is wishful thinking, I know.
It is too late for me to get any disability from work, as my full time work, ended many years ago. I only work 2 days a week at this point, if that. I am not a very reliable employee any longer.
This is a good thread. I am glad your neuro brought this up Julie.
Michelle
I have been thinking about this topic a lot lately. Mostly because it is getting hard to take care of myself and that my current medications don't seem to be working.
Disabilty insurance is something people should definitly carry, through work or privately. I have been on disabily since 1989 and without the disabilty insurance I would have been homeless long ago and never have been able to aford any of my medications over the years. At one point my out of pocket each month for medicine $1300. That was even after my PCP was giving me a lot of my medicines as free samples out of his office.
When you do apply for disabilty (especially SSDI ) I believe it is very important that you have an attorney. It really does seem to help you get through the process. In my case I saw an attorney about my case but never really need him to do anything, but just having his name on the form seemed to help.
I also yanked out the tub/shower combination in my main bathroom as I was having trouble trying to get in and out of it. I now have a walk in shower (6 inch lip) so that it is easier to take a shower. This also made the bathroom larger and easier to get around in. In a lot of bathrooms it can get trick getting around in them with a cane let alone something like a walker of wheel chair because of their size. In fact all of the rooms in my home are very large (kitchen 16 x23, living room 16 x 23, bathroom, 13 x 12, etc).
I have also started looing into a service dog for myself. It is getting to the point that I really should have something like that to help keep me safe. I have been using a cane for a while now, but even that is not fool proof to keep me from falling as lately I have been tripping myself with the cane every once in a while. Does anyone know if Medicare will pay for a service dog? From what I hear the VA will only pay for one if you have service connected disability. I am also wondering if a service dog would be able to help in the area of keeping me from doing stupid things like taking stuff out of the oven with out a pot holder. So far I have not been able to find out what kind of things they can be trained for.
I am also looking into putting in a ramp for my front steps in order to help me get in and out of my house.
Dennis
Disabilty insurance is something people should definitly carry, through work or privately. I have been on disabily since 1989 and without the disabilty insurance I would have been homeless long ago and never have been able to aford any of my medications over the years. At one point my out of pocket each month for medicine $1300. That was even after my PCP was giving me a lot of my medicines as free samples out of his office.
When you do apply for disabilty (especially SSDI ) I believe it is very important that you have an attorney. It really does seem to help you get through the process. In my case I saw an attorney about my case but never really need him to do anything, but just having his name on the form seemed to help.
I also yanked out the tub/shower combination in my main bathroom as I was having trouble trying to get in and out of it. I now have a walk in shower (6 inch lip) so that it is easier to take a shower. This also made the bathroom larger and easier to get around in. In a lot of bathrooms it can get trick getting around in them with a cane let alone something like a walker of wheel chair because of their size. In fact all of the rooms in my home are very large (kitchen 16 x23, living room 16 x 23, bathroom, 13 x 12, etc).
I have also started looing into a service dog for myself. It is getting to the point that I really should have something like that to help keep me safe. I have been using a cane for a while now, but even that is not fool proof to keep me from falling as lately I have been tripping myself with the cane every once in a while. Does anyone know if Medicare will pay for a service dog? From what I hear the VA will only pay for one if you have service connected disability. I am also wondering if a service dog would be able to help in the area of keeping me from doing stupid things like taking stuff out of the oven with out a pot holder. So far I have not been able to find out what kind of things they can be trained for.
I am also looking into putting in a ramp for my front steps in order to help me get in and out of my house.
Dennis
The NP suggested the following:
1. Talk to my PCP "now" about the possibility that the day will come when I need to stop working. Ask them quite frankly if they will be there to help me through the medical side of applying for disability. He said we need to have that conversation to see how committed our doctor is to helping us manage when things get worse.
2. Get long term disability like Quix suggested.
3. Have a complete copy of my medical records - not just some records but all records we can get our hands on.
The MS neuro asked me how I was going to manage living totally by myself since my son is finally moving out. I told him I was moving to a one-level condo. He asked if I had a plan for grocery shopping (I can't drive) and getting to work etc. I didn't have an anser. He said he would contact the MS society in our area and see if they can have someone help me with these issues.
Part of me feels this is overkill and like Quix said it is a squeemish subject, but the more I think about it, the more I realize how important it is. I have seen a few friends suddenly put in this situation including the director of my division who had a stroke last Thursday evening as she walked to her car at 8 pm at night.
We know one thing about MS progression and that is that is it unpredictable. We hope for the best, but lets be realistic, we must prepare for the worst.
Julie
1. Talk to my PCP "now" about the possibility that the day will come when I need to stop working. Ask them quite frankly if they will be there to help me through the medical side of applying for disability. He said we need to have that conversation to see how committed our doctor is to helping us manage when things get worse.
2. Get long term disability like Quix suggested.
3. Have a complete copy of my medical records - not just some records but all records we can get our hands on.
The MS neuro asked me how I was going to manage living totally by myself since my son is finally moving out. I told him I was moving to a one-level condo. He asked if I had a plan for grocery shopping (I can't drive) and getting to work etc. I didn't have an anser. He said he would contact the MS society in our area and see if they can have someone help me with these issues.
Part of me feels this is overkill and like Quix said it is a squeemish subject, but the more I think about it, the more I realize how important it is. I have seen a few friends suddenly put in this situation including the director of my division who had a stroke last Thursday evening as she walked to her car at 8 pm at night.
We know one thing about MS progression and that is that is it unpredictable. We hope for the best, but lets be realistic, we must prepare for the worst.
Julie
I'm surprised that no one else has ideas to consider here. Q is so right about that disability insurance - maybe even the
My mother's first reaction when I told her I have MS isthat we must move into a one floor home. Her sister had MS and was in a wheelchair the last 10 years or so in her life. she moved into this home almost immediately after her dx. She wanted to be prepared.
I do think about living arrangements - and envy Quix's construction of an elevator shaft to her home. I have three floors, counting the basement and the stairs are tiring some days.
One of my sisters did a major bathroom remodeling - she planned ahead and put in pocket doors (they slide instead of swing in/out), made all the doors extra wide and her shower is definitely wheelchair accessible if she would ever need that. All of her planning includes the thought *when I get older* and she has no major health problems.
Medical power of attorney forms are also important. Estate planning too. Even if you think you have next to nothing, you want to be sure that you have made the right plans, legally. Does someone know your wishes if you are unable to express them for yourself?
Julie, just what did the NP suggest to you?
I hope others will join in here ....
Lu
My mother's first reaction when I told her I have MS isthat we must move into a one floor home. Her sister had MS and was in a wheelchair the last 10 years or so in her life. she moved into this home almost immediately after her dx. She wanted to be prepared.
I do think about living arrangements - and envy Quix's construction of an elevator shaft to her home. I have three floors, counting the basement and the stairs are tiring some days.
One of my sisters did a major bathroom remodeling - she planned ahead and put in pocket doors (they slide instead of swing in/out), made all the doors extra wide and her shower is definitely wheelchair accessible if she would ever need that. All of her planning includes the thought *when I get older* and she has no major health problems.
Medical power of attorney forms are also important. Estate planning too. Even if you think you have next to nothing, you want to be sure that you have made the right plans, legally. Does someone know your wishes if you are unable to express them for yourself?
Julie, just what did the NP suggest to you?
I hope others will join in here ....
Lu
Man! would I like to see a discussion of this written up as a Health Page!
What a squirmy, uncomfortable topic, but one that is crucial.
Right alongside my recommendation to all young employed people to carry disability insurance and never drop it!
Quix
What a squirmy, uncomfortable topic, but one that is crucial.
Right alongside my recommendation to all young employed people to carry disability insurance and never drop it!
Quix
I hope people will contribute their ideas as well Lu. So many in our group have already gone through this or are in the process right now and can pass on "lessons learned".
I think that prior to my MS diagnosis I spent a lot of time and energy trying to find out what was wrong with me. When I finally got that diagnosis I focused my energy to learning how to deal with the daily aspects of having MS. I haven't even given more than a passing thought about a plan if I were to get worse sooner than expected.
Again, I do hope others will add their ideas. The knowledge and advice we pass on to each other can make all the difference.
Thanks.
Julie
I think that prior to my MS diagnosis I spent a lot of time and energy trying to find out what was wrong with me. When I finally got that diagnosis I focused my energy to learning how to deal with the daily aspects of having MS. I haven't even given more than a passing thought about a plan if I were to get worse sooner than expected.
Again, I do hope others will add their ideas. The knowledge and advice we pass on to each other can make all the difference.
Thanks.
Julie
Simplify. I think that is something all of us can do, whether our MS gets worse or not.
Simplify and get rid of those things you don't use or need - if the time comes that you have to relocate, you will have already started cleaning those cupboards and drawers.
Simplify those scraps of paper all your information - financial, medical, personal -is on and get it all into an easy to read, easy to find format.
That is my thought for now. This is an excellent topic for a new health page - I hope others will contribute their ideas too.
Laura
Simplify and get rid of those things you don't use or need - if the time comes that you have to relocate, you will have already started cleaning those cupboards and drawers.
Simplify those scraps of paper all your information - financial, medical, personal -is on and get it all into an easy to read, easy to find format.
That is my thought for now. This is an excellent topic for a new health page - I hope others will contribute their ideas too.
Laura
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