Hi All! Frank's Angel's thread made me think of why I am doing the job I do now...thanks to MS. In a funny way even though I would have been quite content to continue on as I was before dx becoming a nurse has been wonderful so I guess I can't complain, too loud.

Anyhoo, what have you done to prepare for what this nasty disease may toss our way? Maybe we can share ideas and be more ready for the future.

Me:

I went back to school for a more flexible career

I'm holding on to my crappy little ranch house because its in a great location and the set up would be very easy to modify if/when the time comes

Ok, I'll share -

When I got the confirmation MRI results that I had MS, we moved 1500 miles away within a few months. Everything was paper records in the 80's. We moved away from the dx.

I took a job with high pay and got training that would make me employable even in a wheelchair. Turned out to be a good move.

I loaded up on life insurance. No official dx.

Next house we bought was a ranch, just in case...

None of this was really necessary, and it actually worked out quite nicely. I have only one regret - we decided against having any children because of the uncertainty.

Tom

Tom if ever you get lonely you can borrow mine! She is a handful but she LOVES looking at the stars and learning about planets. She also likes things that go fast and all things fire, you two would have a lot in common!

Thank you for sharing. I love your story!

I do think all you did was necessary because it just seems to me that if we hadn't planned for the worst case scenario it would have come much sooner. Or maybe thats just how my bad luck usually works out?

Also our health status could change very quickly, antijinx so its nice to be as prepared as possible I guess.

well, here's my story ...

when I started have sx's coming alot more frequent .. November 2006 - March 2007 from pains thru-out my left elbow, hip/leg area, to bronchitis, to total numbness on left side to drop foot ... I finally went to a doctor - uh, didn't even have a PCP at the time - I was working FT, plus preparing tax returns for my own business ... going 100mph ...

in April - dx'd with MS (whatever THAT is!!) .. I had no clue!!

took me 4 months of aggrevation working with the employer's disability people and SSDI ... had no clue!! that, I decided to return back to school to finish my master's in a whole new degree - non-profit ..

since then (still waiting after 3 denials with SSDI and now in a lawyer's hands) ... I'm one course away from graduating ... and have gradually come up with a non-profit program making quilts for those in need ... and making other items (like pillowcases, tote bags, towels, paintings - watercolors, acrylics) to sell online to raise money to make quilts ...

it's coming along rather nicely ... and my next move (hoping this next summer) to move to Door County .. "the Cape Cod of the Midwest" with the program and continue to work with my art ...

thanks for letting me share ... (and to build my lighthouse!)

JULES, WHAT A GOOD QUESTION TO POSE TO ALL! -- Thanks!

Here is what we did:
(1) My wife and I dedicated all of our time to buying and paying off our house.
(2) We maxed out our life insurance policies.
(3) Paid off all credit cards (minus business cards).
(4) Purchased a scooter, walker and cane in advance,..., just in case.
(5) I found a bunch of biologists who are willing to work using a barter system of sorts, so that if I could not go to a project site, they could. I would not have to pay them for the work but rather get them projects for themselves --- and it has been working great for everyone.

Here is what I should have done but failed to do:
(1) Put the house in my wife's name only.
(2) Paid for a lond-term disability policy
(3) Added a "rider" to my University of California health insurance plan years ago so that I could have kept the insurance longer, before going to a COBRA plan and then an outlandish PPO with Anthem Blue Cross. The "rider" is no longer offered by the University of California, so I really missed the boat on that one.
(4) I should have kept playing golf as long as possible....

-Vic

Tom...you can adopt me. You both would have made great parents but I understand the decision. I have grandchildren that are young enough to want to have very active lives, I can't keep up. It's not because of age but because of MS.

Now back to you at the original thread...unfortunately, I thought I would be working until age sixty plus. MS hit me with a really bad relapse that within two years put me out of work. I have quite a few skills, but at my age, health issues and the hours I can work employment is not an option.

I did have retirement plans, unfortunately my DH did not and I could not make him understand that one day we would need retirement. Within four years my retirement is gone, and I am thinking of ways to work for cash to survive. My DH is self employed with a company that does not offer benefits to its employees any longer...he is fortunate just to have his job. The other employees in his area are gone, fired because of the supply/demand of the economy.

Ten or more bucks a week will add up a bunch over a few months, take that money and put it where it can make more money. Then after a year, take that money and put it where it will make money. I did this for a few years. We have lived off that money for over five. I live in a one story and a wall here or there can be knocked out for wheel chair access. We are also in a good neighborhood, back in the day it was considered prime for the area. It is just inside the city limits, but not so much that traffic is bothersome. The hospital is less than two minutes, the grocery is less than a mile...

These were things that were important to me when I was looking for a house here...last time I lived fifteen miles from nowhere when I lived here.

Yep, have to say this MesS does suck at times.

Like Vic, I was prepared, went thru my crutches, walker, now use a wheelchair, use my travel power chair, hope to get soon my all-the-time in house power chair soon.
DH used to build houses and additions, still can. Put in a 1st bedroom addition with handicap big shower I can wheelchair into.Was still going upstairs and using a walker when he built it. We learned from me, I can't work, if he couldn't there goes our income. Have life and disability insurance on him, job specific so they can't make him do something else.Do what you can before dx.

We bought a ranch with wide doorways. Just in case. But we are finding my husband's back is worse than my MS so who knows which one of us will benefit from it!

We refinanced our home to shorten the length at a much lower interest rate.

We are keeping ourselves out of debt for that rainy day.

I stopped working while I was still young (32) because the doctor took me out but it was the best decision for me and my DD. She is thriving and I think it's because I have been home and have the energy to devote my time to her needs.

I am feeling more fatigue so I am doing a lot of cleaning out and getting rid of clutter so it won't be something I will have to do in the future. I am already feeling the benefits of simplifing my life.

I do wish someone suggested maxing out insurance and other things you all have mentioned before my dx when I started having problems. I was young and had no clue.