While hoping for the best what are you doing to prepare for the worst?

[Jules A]

I agree with CasinoKathy- who wants to do this, my god if people are handling thier lives like this everyday no wonder so many have are having problems dealing with thier MS, Last time I checked with my neuro he hasn't put a time limit on my life such as 6 months, a year etc.

I know people who have or have had cancer (myself included) and they have not started adjusting thier lives anywhere near as much as some have posted here.

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If you don't feel the need to prepare for your future changes from MS thats cool but while I'm not upset that we differ in opinion I do find it a bit unnecessary to write "my god if people are handling thier lives like this everyday no wonder so many have are having problems dealing with thier MS"

I don't recall any of the posters in this thread complaining that they "are having problems dealing with thier MS".

Living below my means and going to school so I could get a job where I now make nearly six figures which will only increase when I finish grad school next year doesn't really seem too over the top to me especially for with someone with a chronic, PROGRESSIVE disease. We will have to agree to disagree on this one.

[Jules A]

Jules, I was informed I was no longer eligible for LTC insurance even without the dx. Just the amount of testing that's been done in the last year was all it took. But I did qualify for a STC policy and have decided to go with it just in case. .

Bummer about the LTC insurance especially without a diagnosis at the time. What does STC cover? Is it short term disability?

I was able to purchase a "modified" version of LTC through my job which costs about $50 a month but only pays $600 a week. It can also go toward respite care should my poor husband become my caregiver and need to park me at the nursing home for a break which is a plus and it is better than nothing I guess. I need to check and see if it could be used toward home health care services which would be a real help.

[Kiwiinoz]

Thanks for this thread

I've always been the "plan for the worst" type anyway - I look at it as a kind of insurance. Kind of like taking an umbrella in case of rain - almost ensures it won't rain .

I'm reasonably newly diagnosed and have found this thread extremely useful in terms of getting ideas on how to "future-proof" my life, thanks Jules for starting this one - I'm sure I'm not the only one who is picking up some great tips.

[jumpinjiminy]

Bummer about the LTC insurance especially without a diagnosis at the time. What does STC cover? Is it short term disability?

I was able to purchase a "modified" version of LTC through my job which costs about $50 a month but only pays $600 a week. It can also go toward respite care should my poor husband become my caregiver and need to park me at the nursing home for a break which is a plus and it is better than nothing I guess. I need to check and see if it could be used toward home health care services which would be a real help.

It sounds pretty close to what you have. It's the same price, and covers $100/day. That includes home health services. So we could have a caregiver come in for about 5 hours a day in a pinch if needed. It give you up to a year of coverage. But if you don't use more than six month at a time, it resets back to zero. I think the max total coverage with resets would be about two years.

[jumpinjiminy]

I wish I could feel this way.

I'm just so panic stricken since my diagnosis that planning makes me feel comforted although I know there is no way to know for sure what anyone's future will bring.

Maybe it is because I have seen the worst of MS.

I think that would absolutely color one's perception of future possibilities.

My grandfather had it and I remember his last five years the best. Unfortunately, they were his worst. He went a very long time. Started with one cane, then two, then a walker, then after the stroke came the wheelchair and inability to communicate. That was the beginning of the last five years. My grandmother had to get him in and out of the bathtub in a teeny tiny bathroom. It still amazes me to this day, her strength and perseverance. She never once complained.

[angelpach]

I've filled out all paperwork to donate my body for research.

I have also made out a Will and a Living Will so that no one will have to have that burden on them of taking me off life support if needed.

We are also about to get a house which is one level (ONLY guest rooms being upstairs) but doors wide enough for my wheelchair which I need from time to time now. It depends on the day/wk/month.

So as much as we all hate to think of it, that day will come for everyone with and without MS.

[Tomjadg]

I deal with reality, and planning for the future.

I don't think it helps to ignore it like it will never happen, but to each his own.

We have a three story 100 year old house that I can't take care of any longer, and as much as we love this house, the reality is that we might have to sell it and move into a smaller ranch type house.
Although I am still working and driving, I am looking at alternatives to get to work if I can no longer drive.
I have to work for the medical coverage.
I am lucky that I am in an office.

[Jules A]

I deal with reality, and planning for the future.

I don't think it helps to ignore it like it will never happen, but to each his own.

We have a three story 100 year old house that I can't take care of any longer, and as much as we love this house, the reality is that we might have to sell it and move into a smaller ranch type house.
Although I am still working and driving, I am looking at alternatives to get to work if I can no longer drive.
I have to work for the medical coverage.
I am lucky that I am in an office.

I'm also about trying to deal with reality and planning for what I can. All my life I have tried to have a plan B and even plan C. It cuts down on getting yourself in a jam and disappointment when your only option doesn't pan out.

Your post reminded me, my favorite house of my life was a city row house over 100 years old and although I still think of it fondly and even dream of it some nights it is in the past. I have accepted that unless I come across a ton of money for an elevator etc. a more user friendly one level home is my reality.

It is what it is I guess.

[cosake]

Plans to remodel have been modified so that our addition (when we are finally able to build it) will no longer have a step down into it, and will be built so that a wall could eventually be put up to make it into a downstairs bedroom if necessary.

Walkways outside built by hubby were made wide enough to accommodate a wheelchair, in case it ever becomes necessary.

Doing little things that don't affect the present very much, but could have a big impact on the future.

[Sir-Voor]

Everybody prepares for the worst; it really helps people to stop thinking of it.
People lock their doors at night, have a spare tire in their trunk, get all types of insurance (including life insurance) not for the fun of it or because they enjoy thinking of what could happen.

Most of the preparing I do is for old age, and it just happens to be the same preparations that I would do for a MS down turn.

Every time I do a project of the house and farm, I first think of the maintenance.

* I think that if I plant that here will I need to use a weed eater or my riding mower?

* Maybe I should use screws instead of nails, to make it easier to remove if later I need to.

I got that back-up generator before the ice storm hit, and giggled as others tried to find one after the storm. (Yes I have a evil side)

I got LTD insurance when I first got my current job, 10years ago before any noticeable signs of me having MS. (FYI: that was 13 months before first symptom and DXx.)
I have not needed it, but is has freed my thought of worry. I we all know how important it is to reduce stress.

• Financially I paid off my civic hybrid early this year, and now I’m debt-free.
• And I pay off my credit card in full every month.
• Now I can start increasing how much I’m saving.

I eat a anti-inflammatory diet not only to prepare for a relapse, but to also help reduce the odds of having one.

[Grade1]

Preparing for the worst is my way to go, too.

My ultimate plan is to find myself one or two good and caring doctor friends. Who will supply me with something I need for the exit-option, should I ever arrive in a situation where I would feel like it. An old friend of mine is a vet; so I'm sure she knows the practice. I know she thinks that is merciful towards the suffering animals and wonders why do humans have to bear the kind of suffering many of us do.

But, as I said, that is the ultimate plan only.

[Jules A]

Preparing for the worst is my way to go, too.

My ultimate plan is to find myself one or two good and caring doctor friends. Who will supply me with something I need for the exit-option, should I ever arrive in a situation where I would feel like it. An old friend of mine is a vet; so I'm sure she knows the practice. I know she thinks that is merciful towards the suffering animals and wonders why do humans have to bear the kind of suffering many of us do.

But, as I said, that is the ultimate plan only.

I hear ya and pray that I remain lucid enough to recognize when it is time. MS didn't introduce concern or plan to me but it has intensified it.

I did my first advanced directive, which used to be called a living will, back when I was in my early 20's, long before MS.