Preparing for my financial future with MS...any suggestions?

[Jules A]

My suggestion is to bend over, put your head between your knees ( if you are able ) and kiss your butt goodbye. Unless the medical establishment gets its *hit together, and solves the MS mystery, we are all 'up the creek'. 'A rising tide lifts all boats'. Without a 'cure', we are all under water.

Aww c'mon now Jerry. I am known to be from the Doom N Gloom camp with regard to our long term outcome also however in the meantime making good financial decisions is something we have control over and will serve to make our likely grim future a little less cruddy, imo.

My goal is not to be both sick and broke so I'm doing everything I can now to ensure that won't happen including a very specific Advanced Directive refusing any treatment or procedures with the exception of tons of pain meds.

[Waydwnsouth1]

Trevvian this is such a great topic and it really hits home with me. My wife and I were in our mid 40's when I began my journey of being diagnosed with MS. With both had 401k's and I had an investment portfolio that I had inherited which left us pretty well set. Or so we thought. The company I worked for had worst Health Insurance I have ever seen. I later learned that the owner of the company also had a stake in the insurance company so there was no way he was switch in no matter how poor the coverage and how high the premiums were. Well, the 10 year journey and bouncing from one Neuro, 4 in all, the medical bills were flying in like snowflakes falling in a blizzard. The insurance company was paying for nothing!! By the time I was finally diagnosed we were thousands of dollars medical bills and no money left. Though we had planned and prepared we were not prepared for this. Unfortunately my MS is rather agressive and is making it difficult for me to work.

We do own some rental property which we will probably sell and considering selling our dream home. We are both miserable over the whole thing.

So yes you are wise to plan. And as one poster hope for best but prepare for the worst.

To the poster that said BC/BS declined their Tecfidera I don't understand that. I have BCBS and they approved it for me right off the bat.

[OrangeMetal]

quoting:
To the poster that said BC/BS declined their Tecfidera I don't understand that. I have BCBS and they approved it for me right off the bat.

Is this still an issue? I thought we were seeing progress on insurance companies covering drugs like Tec. I'm on a patient assistance plan but am trying to get a job with health ins.

[onlyairfare]

There are many different BCBS insurance companies, depending on your location and your employer, so one plan might cover Tec right off the bat, and another might not.

And though there has been insurance reform at the federal government level, insurers are still allowed to have formularies, lists of favored drugs that are first choice, and others that are second line (or third or fourth choice).

Still, if you need Tec because it is the best choice for you, or because other drugs haven't worked or have caused complications, then you should be able to appeal the denial.

[trevvian]

Thanks for all the great input. I have a number of things to add to my list for my meeting with the financial planner.

Plus a bonus from the comments on rentals. I'm not in a place to do that yet, but I am going to explore refinancing. If I could get a 15 year term, at a slightly lower rate, I could pay off the house 7 years sooner & sock away nearly $50k in interest savings toward health costs.

I will update on how the meeting goes & if I think it's worth the cost. If he tells me it's hopeless, I'll take Jerry's advice straight to the bank.

Would still be interested in any other experiences with LTD, saving etc.

[Reformed Yankee]

I guess I'm somewhat lucky. I'm in the military and I will be able to get VA disability. The amount I get will depend on the disability percentage I end up classified with. I'm hoping for a high percentage. I don't have any bills other than our house and my wife works as a teacher. Another VA benefit is I can get any needed medication for $8 copayment. I am just beginning the MEB/PEB (medical retirement) process, so we'll see how it goes. I certainly didn't ask for MS, but I'm going to make the best of every day.

[Tawanda]

Too late for me, but a big "heads up" for my kid!

Personal finances should be taught starting in elementary school! For me, the time to prepare for life with M.S. was before I got M.S.! I lasted in the workforce less than a year after diagnosis. Not much time for financial planning...

I grew up in a paycheck to paycheck family so that's what I learned. When I was diagnosed with M.S., it set off the alarm bells for my stepmother (not much older than me, BTW) who promptly invested in supplementary health insurance. Glad I taught by example, anyway!

I hope DD will also be more responsible than I was. I pray to God she won't get M.S., or any other catastrophic illness for that matters, but it wouldn't hurt her to have a good financial plan in place regardless. I am hoping our little house will be paid off and will serve as a small nest egg for her in the future. That is all I can give her now.

[Dale76]

I'm trading some stocks currently and planning on making some long term investments as I have money to do so. Stocks are not for everyone but I have been doing decent on them for a few years now.

It is a tough thing though, hard to come up with extra money when I'm constantly having to reduce the amount of work I can do.

Message to those that are still able bodied, SAVE NOW, it doesn't get easier and having that nest egg will reduce a lot of stress and relationship trouble down the road.

[Tawanda]

Message to those that are still able bodied, SAVE NOW, it doesn't get easier and having that nest egg will reduce a lot of stress and relationship trouble down the road.

Amen to that, Dale! Message to all parents: Do have that second "talk" with your children when they are old enough to grasp it!

[dyin_myelin]

quoting:
To the poster that said BC/BS declined their Tecfidera I don't understand that. I have BCBS and they approved it for me right off the bat.

Is this still an issue? I thought we were seeing progress on insurance companies covering drugs like Tec. I'm on a patient assistance plan but am trying to get a job with health ins.

Biogen got me an assistance program that paid 100%. I am so disappointed in BCBS though.

[poppydarling]

There are so many great ideas listed here, so all I will say is: despite all of the financial gurus on television and in books imploring us all to do exactly the same thing, there's no one-size-fits-all when it comes to finances. Especially if you have a chronic illness and have the misfortune to be the working poor or God forbid, "middle class."

You could save what seems like a really great nest egg, only to have it obliterated by a medical emergency.

You could count on working for X amount of years, and then have to leave your job overnight due to The Big Flare (which happened to me).

I think one of the best things you can do is live modestly, even frugally, save as much as you can, and definitely consider living in a place with a low cost of living. This has made my life manageable post-diagnosis more than any other factor.

My major fallback is forming a small community of tiny houses on a piece of land jointly owned, in a place with a moderate climate and low cost of living. Many of the house plans feature one-level universal design, and most can be built for under $30,000, so I could own it outright. They cost much less to heat and cool, they're easier to clean, and the built-in community is so much healthier emotionally!

Sharing resources and services like transportation, landscaping, housecleaning, physical therapy, a pool and other amenities would make it so much easier to afford as well.

That's my plan, anyway :-)

[Temagami]

Where are the building plans for these houses?

[laheisey]

Trevvian - Financial Planning?

Is there a reason to believe you will be completely disabled and therefore not working?
I have had MS for 28+ years and I am still working a full time job. I think planning for the worst case scenario is good but don't anticipate that being the expected outcome.

[grb1450]

Depending upon many factors including your age, rate of disease progression, etc. you may choose to apply for Social Security Disability. If you were to qualify for SSDI, you are then Medicare eligible. Comprehensive health coverage under Medicare would typically be less than 50% of COBRA. Everybody is Medicare eligible at age 65, but Disability and Medicare can be a bridge to get you there. It was for me.

[MSW1963]

Real Estate income is always a good investment, IMO. Investing now when your income is secure and RE hasen't rebounded in most areas of the country to bubble level prices, the timing may be good for you.

Later, if you find it necessary to use 3rd party property mgt., their fees are are in the 10% range of rental amount.

Good luck.