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

[Jules A]

It makes me sad to read posts from people that are stuck in situations with little ability to make changes because of how difficult MS has been to them. Can we share things we are doing now to prepare for our uncertain future?

I am blessed to have remained well enough to go back to school to make a career change that is more flexible should I need accomodations at some point.

I quit smoking after reading the studies regarding MS progression and cigarettes.

I'm keeping my crappy little single level house and if we move will make sure the new one isn't my dream home but one that is either handicapped accessible or could be modified easily.

I was diagnosed late and had my financial stuff in decent order but I'm working as much as I can now while I am able and banking what will probably be much needed funds for the future. Hopefully it will be a long time away.

[CasinoKathy]

Don't mean to sound rude or crude, but--- who the heck wants to even think of the worst, much less prepare for it??!! I for one DON'T!!!!!!!!!!!!!!!!!!!!!!! Daily living with ms is enough struggle for me - I certainly don't need to concentrate on how awful the future may become!!

[Blessings2You]

My mom lived by "Hope for the best, get ready for the worst, and take what God sends." I try to do the same. I think it's a good balance.

I try to remain optimistic, but I think preparing for the worst is being proactive, controlling what I can control.
It eases my anxiety somewhat to have contingency plans.

Most of what I've been doing is probably a good idea for ANYbody getting to a certain age. Trying to get financial papers and other things organized, folders labeled, contact numbers, instructions, etc. written down and accessible.

I'm trying to label all those plastic storage containers and shoe boxes. If it gets harder to go up and downstairs, I want to be able to tell my husband, "It's the box on the top shelf labeled 'Christmas cards'."

[Spydre]

As far as preparing, no, I haven't done a lot of preparing. Getting the financial ducks in a row can't be done, I'm on disability and my husband is in school, and we can barely make ends meet as it is. Thankfully, my parents and my in-laws have college funds set up for boys, because if we had them, we would have had to cash them out to be eligible for the benefits we currently get (food stamps), which isn't much. The house is as organized as we can keep it, and we reject all offers of giving us stuff that would just take up more space than we have, and I don't have to tell hubby where something is, other than half of his clothes!

Am I worried about losing my ability to make it up to my second floor? Of course I am. But that is a long term fear. So far the only symptoms below the waist I get is tingling, so maybe it won't happen to me, and so far I have no lesions on my spinal column.

[Shallwearpurple]

the future

I have not been diagnosed yet. One doc says yes and one says no. I'll be seeing another in a couple of weeks.

No matter what they say, I'm having trouble with the steps in our home. There are a bunch. There's no way in and out of the house without taking steps. The laundry is in the basement as well.

So planning is necessary. Whatever this is it is causing me to fall on the steps, get out of breath doing laundry, etc. We are starting some projects in order to put our home up for sale next year. The next house will have at least one entrance that is no more than one or two steps so that a ramp can be installed if and when needed. The master and laundry will be on the main floor. I want a covered porch, too!

I bought hiking sticks. I don't need a cane yet, but out and about on vacation and such, the hiking stick doesn't stand out and gives me the extra stability if I need it. I bought it before a doctor said to do so.

We will not be adding any more pets to our home unless it is something that the kids can do all on their own.

Some of us might need to carefully consider the next purchase of a vehicle carefully to allow for space to hold scooters and such.

[mtnwillow]

Bravo, I agree with being pro-active and preparing for less mobility and fewer responsibilities. I have not been able to work for 18 months now. Last month we bought a smaller house without stairs which can easily be modified for a wheelchair (just in case). I have been and will continue to pare down our material belongings. We had lived in our previous house for 22 years and held on to a lot of memories. So farewell, to unworn clothing, heavy furniture, breakable dishes and nameless clutter. By choice no one wants to be disabled but we can choose to make the best of what life has dealt.

[Jules A]

Thanks for the replies! I didn't even think about the possible changing needs of our vehicles.

[domi6300]

Jules A- Thanks for asking about this...it always helps to see what others have considered that I may not have thought of!

For myself, I am working as much as possible (without making my health worse) and trying to pay off debts (darned student loans!) and build savings like crazy. My husband and I are still young (25), so we are scrambling to build any "nest egg" we can.

My husband and I have also talked about only considering single level homes when/if we purchase, just in case, and I will also need to be getting a new car soon as well...I'm still driving a stick and grinding gears a little more often than I would like because of occasional weakness in my legs!

[Jules A]

Don't mean to sound rude or crude, but--- who the heck wants to even think of the worst, much less prepare for it??!! I for one DON'T!!!!!!!!!!!!!!!!!!!!!!! Daily living with ms is enough struggle for me - I certainly don't need to concentrate on how awful the future may become!!

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.

[Thinkimjob]

I have a plan for the absolute worst but not much of a one, really. If it's utterly dreadful, then goodbye cruel world.
If it's very bad, but bearable, then a place in a nice Young Care facility in Brisbane.
If it carries on as is, disability support pension in the coming year.
Until then, it's my teenage birth control method - prayer.

[Bob698]

Don't mean to sound rude or crude, but--- who the heck wants to even think of the worst, much less prepare for it??!! I for one DON'T!!!!!!!!!!!!!!!!!!!!!!! Daily living with ms is enough struggle for me - I certainly don't need to concentrate on how awful the future may become!!

That's not what worst case is about.
Its planning for an uncertain future, that doesn't mean its going to happen. You just recognize that you may need to plan things now for later while putting yourself in a more favorable situation.
It means thinking about pretty much everything more than regular folks. Do I need a new car or maybe a used car instead? Do I even need a car? How much would I save using local transportation and how much of a pain in the neck is it to use? What's the most managable situation for me in terms of housing? What if I lose more mobility in a couple of years? Is there anything I should be doing now in case that happens? What's my backup plan in case I lose coverage?

BTW, for you younger folks paying down debts- Bravo and congratualtions! The more of that millstone you can get off your neck, the better. It feels so great when the bank has to pay you money instead of the other way around.

[Camsue]

planning ahead

Anyone have long term care insurance? I know I should get it, it's expensive..so I'm playing the odds and waiting for a while to purchase it.
Anyone have it?

[sexygatubela]

My mom lived by "Hope for the best, get ready for the worst, and take what God sends." I try to do the same. I think it's a good balance.

I try to remain optimistic, but I think preparing for the worst is being proactive, controlling what I can control.
It eases my anxiety somewhat to have contingency plans.

I totally agree with you. On the contrary, my mom was the one that had a problem with me preparing for the worst, even when I didn't have a definite diagnosis. It made me feel somewhat in control. I am glad I did, because just a few months after I was diagnosed.

Even when my husband found a job (he was staying home with the kids and going to school at the time) and we moved to Germany, my mom still blamed me as to why we had to move so far. It was all part of the plan. Since I got so sick, so soon, and progressed so quickly, it was very uncertain what will happen to us in case I had to quit work. My DH found a job quick (thank God) and we moved. We also took more life insurance and other things before I was diagnosed.

Certainly, my advice, is also: "Hope for the best, get ready for the worst, and take what God sends."

[rdmc]

An easy thing to do is to build an "arsenal" of supplies/devices/aids you might need at some time in the future. You can pick these up at yard sales when you see them for pennies on the dollar of what they would cost to buy if you had to get them new. This has helped us so much...not that I need any of them everyday, but have them available when needed. Some of the items you might include are: canes, a manual wheelchair, a rollator or walker, a shower chair, portable toilet chair, etc. These things have come in handy during an exacerbation, or after surgeries I've had. Mostly they're just stored in the garage, but when I need them we already have them.

When we added a bathroom, we made it handicap friendly...tiled in a bench in the back of a deep shower w/no door, handrails, hand held shower, etc. Put grab bars beside the toilet, used higher toilet (we also put one of those in our other bathroom.) Nothing I absolutely had to have at the time, but really glad I have it now, because it makes things easier.

I went back to work after my diagnosis. I had been a stay at home mom for almost 15 years and had lost all my SS credits. So I took a job so I could rebuild my credits if I needed to file for SS disability sometime in the future.

[4boysmom]

I've done many of the same things! We've prepped for the future for years without any disease in mind! One thing I didn't get was long term care insurance, and I'm sorry, but MS seems to be one of the diseases you're denied with. So I'll have to depend on my family!

I did remodel my kitchen this spring, making it more accessible for wheelchair, etc. if needed in the future. I have everything on the top floor to live, so I won't have to use the basement. I do need to do something with my shower, but I need to pay for the kitchen first.

I have always kept 2 insurances long before being diagnosed because it seemed when I was younger, I was always the oene getting sick . Also, I wanted to be covered in case I decided to quit working.

I'm in a lower stress position than teaching 8 year olds every day (got a master's in instructional technology so do software for the school district).

Preparing does bring a sense of peace to your life!