Tuesday, July 31, 2012

Multiple Sclerosis is a Damned Expensive Disease!

The Unspeakable Bits; From A Life With MS

When people in the general public read that multiple sclerosis is a “prime-of-life” disease, I really don’t think they understand the totality of what is being stated. It may even take those of us diagnosed a bit of time to realize, but when MS hits in the “prime of life,” it can also hit our prime earning years.

That’s just one of the ways that MS can hit us in the pocket.

Even if we are able to continue working, many of us have had to reduce workload, hours and stress, and excuse ourselves for medical appointments – all hindrances to those brass rings of promotion and pay increase. As a co-leader of my Men With MS self-help group puts it, “We go from ‘thrive’ to ‘survive’ mode.” These changes to our pay and potential pay can come back to haunt us a second, third and even fourth time when it comes to long-term disability payments, Social Security Disability and even reduced Social Security retirement checks when we reach retirement age.

Reducing the money that comes in isn’t the only way in which the disease tolls our life. Increased insurance premiums, larger and larger out-of-pocket medical expenses and unbridled rise in the price of MS meds can make us feel that MS has accessed our PIN and hacked into our bank accounts.

For those who do have to leave work and apply for various disability programs, the wait can be long and expensive. The current two-year waiting period for Medicare for those applying for Social Security Disability can drain a savings account tout de suite. The expense of a disability lawyer to help appeal rejections – while regulated, and often worth the cost – can add expense at the lowest point in our financial lives. Modifications to our homes and purchase of quality assistive devices are rarely covered to the extent many of us need.

One study published last year indicated that although the interferons are clearly beneficial, the benefits do not come cheaply either for insurers or for patients who have to pay their share in terms of co-payments or co-insurance. Another recent study has called into question the ability of the interferons to delay progression to disability, causing some to question their costs and benefits. (Editor’s note: Since other studies have contradicted these findings, additional research is needed to more effectively gauge the long-term impact of the interferon therapies, and to determine the most appropriate therapy for each individual.)

Then there are the costs that we might not think of. When gas prices go up, those of us forced to use larger and modified vehicles in order to accommodate scooters and power chairs are hit harder, for example. I’m sure that many of you could jump in (and I hope you will) to relate some of your surprises as to where MS hit your personal economy.   

It is important to realize – hopefully before things reach their toughest – that help can be found in many forms. The National MS Society’s financial assistance program offers guidance, support and resources to help contain the financial impact of MS. To speak with an MS Navigator®, who can review available resources and provide an application, call 1-800-344-4867.

I would add money to the well-known list of polite unspeakables of politics and religion. Today, however, I’d like to open the conversation about the financial burden that MS can be to a person and family. We didn’t name this blog “The Unspeakable Bits” for nothing. Only by talking about it can issues be identified and addressed. And you can take that to the bank.

Wishing you and your family the best of health.

Cheers

Trevis

You can follow Trevis via TrevisLGleason.com, his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.

47 comments:

  1. I had to leave my position last year at the age of 58....not young......however i am losing a large amount of money regarding my 401 k as my employer went from a traditional pension to a 401 and due to my age was making large deposits to my 401 k and would continue to due so until my retirement. I was very fortunate as far as my disability ...i was awarded on my first try.....it took only 3 months. I will have to pay 436.00 per month for my cobra with a 3000.00 out of pocket deductible per year for 2 years until my medicare is available,even with all this i realize that i am more fortunate than many......this disease take a huge toll both in our quality of life as well as finanically.I don't know why but i have begun to speak of all the unspeakables.......it started 12 years ago when i almost died (nothing to do with ms)....I speak my mind unashamed as i have realized how short life really is.....I am thankful for every day of it...

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    1. I have been considering applying for disability, but am very concerned about being turned down and it just taking a toll on my family. I work full time as a ward clerk, and average 48hrs a week. You said disability approved you the 1st try. Can you explain to me your symptoms so I will kow if its even worh me applying. I would appreciate your time.

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    2. The Social Security Disability website has good information about applying and what they are looking for. http://www.ssa.gov/disability/

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    3. @ angie........i used a non attorney firm called allsup.......they were wonderful........they evaluated my case...i believe part of the reason i was approved immediately was my age 57.....and i have primary progressive ms.........they won't take a case if they don't think they will win it......because they'd be working for nothing......most attorneys won't even talk to you unless you've been rejected......they also had my long term private disability insurance through my former employer pay their fees.......so it cost me nothing........they advise you on so many things that you never think of .......to do with credit cards and life insurance help that i had no idea i was entitled to because of my disability......they are wonderful.....give them a call

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    4. Note.....I heard of allsup through the ms society

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    5. Speak with your doctor about your application for disability. He needs to use the right "buzz words" when communicating with Social Security and Insurance providers. He needs to support you. And when you complete forms-answer questions as if you are having your worst day. Detail what you CANNOT do. It can be discouraging when you have to focus on all that you cant do. Your life has changed. Dont feel like you are taking charity either. I worked for 47 years and paid into SS. I was in the prime of a successful career. I did not choose this disability or the personal and financial costs.

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  2. Thank you so much for publishing this!!! My family thinks that our money is just spent frivolously! But being diagnosed at the ripe age of 32 years old and having to stop working shortly after that has made even surviving difficult. Until you are hit with a disease like this, you don't realize how fast a savings account (if you are lucky enough to have one in the first place) can be depeleted. We have never been able to take an actual vacation. Too much expense trying to not only modify my home, my furniture (adjustable bed), different sofa (one I can get on and off easily) but also my vehicle. Alot we haven't been able to afford yet but hopefully one day. Not to mention meds, food (trying to eat healthier, of course is more expensive) and more gas because of constant trips to drs appoints and hospital stays. Alot of this comes out of pocket to an already tight budget.

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  3. As a 24 year old male who was diagnosed 19, I went from working 40 -80 hours a week to not being able to work at all. If not for the support of my parents in their everlasting love I would very likely be a deadman and unsupported in anyway. Even with my medicare benefits if it weren't for the free drug programs that tysabri offers I would not be able to get the drugs that I needed. MS Has always been the stopping point To any of the dreams ive had, ms has shattered my social life, and above all other things ms is very underestimated.

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  4. As a 24 year old male who was diagnosed 19, I went from working 40 -80 hours a week to not being able to work at all. If not for the support of my parents in their everlasting love I would very likely be a deadman and unsupported in anyway. Even with my medicare benefits if it weren't for the free drug programs that tysabri offers I would not be able to get the drugs that I needed. MS Has always been the stopping point To any of the dreams ive had, ms has shattered my social life, and above all other things ms is very underestimated.

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  5. MS will and does hit you in the pocket book. I retired 10 years before planned and gimped away from a six figure income. Upon retiring the next challenge was paying for health insurance which sky rocketed even with a group retirement plan.

    Our insurance jumped from a couple of thousand a year to eleven if all went well. When we combined MS medication to the mix we felt an increase medical cost to eighteen thousand a year. Bottom line we eliminated medication from our list due to cost. I am one of the lucky ones so far and have managed to get bye OK without meds. So far so good but who knows what the future will bring.

    MS is a life changer more ways than we can imagine.

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    1. Have you not applied for social security disability.....two years after approval you receive medicare.....

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  6. Finally had to stop working @ 46, gave up my six figure job for SSDI. thankfully approved in 34 days, but the 3400 per month don't cut it.. still waiting on private disability insurance appeal but currently paying 809 per month for insurance.

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  7. Finally had to stop working @ 46, gave up my six figure job for SSDI. thankfully approved in 34 days, but the 3400 per month don't cut it.. still waiting on private disability insurance appeal but currently paying 809 per month for insurance.

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  8. Finally had to stop working @ 46, gave up my six figure job for SSDI. thankfully approved in 34 days, but the 3400 per month don't cut it.. still waiting on private disability insurance appeal but currently paying 809 per month for insurance.

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  9. Finally had to stop working @ 46, gave up my six figure job for SSDI. thankfully approved in 34 days, but the 3400 per month don't cut it.. still waiting on private disability insurance appeal but currently paying 809 per month for insurance.

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  10. I'm 55, PPMS, and home. I was fortunate that there was an early retirement incentive and I was able to take advantage of it. After 18 months of tests and waiting and more tests, I was diagnosed and consented to giving Copaxone a try. That drug costs $48,000 a year. Lucky I have insurance.

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  11. I do not take an interferon, but use IVIG. It costs 100k plus a year for the meds alone. Thank goodness I have insurance! But life changed after being diagnosed at 32....my kids suffer the most. And I feel I have it good compared to many. Most people do not understand as the do not see most of my disease effects....and sometimes that is a blessing in itself.

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  12. I do not take an interferon, but use IVIG. It costs 100k plus a year for the meds alone. Thank goodness I have insurance! But life changed after being diagnosed at 32....my kids suffer the most. And I feel I have it good compared to many. Most people do not understand as the do not see most of my disease effects....and sometimes that is a blessing in itself.

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  13. I do not take an interferon, but use IVIG. It costs 100k plus a year for the meds alone. Thank goodness I have insurance! But life changed after being diagnosed at 32....my kids suffer the most. And I feel I have it good compared to many. Most people do not understand as the do not see most of my disease effects....and sometimes that is a blessing in itself.

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  14. I do not take an interferon, but use IVIG. It costs 100k plus a year for the meds alone. Thank goodness I have insurance! But life changed after being diagnosed at 32....my kids suffer the most. And I feel I have it good compared to many. Most people do not understand as the do not see most of my disease effects....and sometimes that is a blessing in itself.

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  15. I was diagnosed when I was 22 and the Monster got me when I was 29 & stopped me from working a job making $40000 to one that was $23000. Huge difference & then just 2 years later I to quit for good. I'm glad I get something but $1400 a month doesn't really get it...$600/mth for rent & $400/mth for my van that I have to have to transport my chair. I know all us MSers are facing this, it's just so dang hard. I feel guilty for spending $20 on a haircut, I know it's crazy. I have gone back to school & received my degree in billing & coding, but I am scared to death to get a job again...what if wake up & it's 1 of those mornings that takes me 2 hours to get ready. There are not many jobs that let you come in when you feel like it. Any suggestions?

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    1. When you say you receive 1400.00 per month if it's from social security ......i don't believe you can work and collect social security........if that is not the case you obviously need a job you can do from home at your own pace......sounds like billing and coding is perfect because many people do that from home.......good luck

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    2. Lots of companies will work with you if you're up front with them. And for those that don't, there's always the American Disabilities Act. Goodluck.

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    3. I say go for it! I'm thinking you may have had fears and hesitations about earning a degree? But you accomplished that goal! I believe that having goals and ambitions is really important, especialy when your effected at a young age. I try not to let MS have everything. I have also seen that employers can be very understanding and flexable! Think it all thru and do what feels right! Good Luck!

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    4. Hi, I definitely feel your pain, and have been living with this nightmare for slightly over 20 years! I was diagnosed in 1992, & was 22. I've always been someone that has had a decent job and maybe two at a time since I've been 16 years of age. Although, my mother had the disease all my life. She passed away in 2011 & she was 54...I've similarly gone to school since highschool gotten my bachelors degree, and have constantly tried finding the right kind of jobs, working at a desk, doing telephone work. I think that having a positive attitude is the best thing possible because it toally makes coping with this friggin disease possible. I've had insight to this knowing this monster up close and personal. It's been in my life since I've been old enough to know what it's like to be extremely active. The idea of going to a job center was the best decision that I have ever made. It has become the gatekeeper for having a livlihood, for a few different and important reasons. First, it gives people that have legitimate disabilities a leg up,(pun intended!)for just about every resource there is for finding employment. The resources include: help for finding personal mobility, if you are not ambulatory, A vehicle to transport your powered chair. Also, they can provide people with the education and training that's needed for reaching the desired employment goal. Then, once the training is completed, they help you find employment by networking with agencies that cater to people with disabilities. There are a lot more resources than you think, that help and understand that everybody needs to have a job. My goodness, I feel lucky that it's MS that I have & not something else,that would cause my brain to be unable to process things properly. Yeah, all of us have moments throughout the day, where we feel crappy, but knowing that there ARE some people who are familiar with this same thing is refreshing...I'm a huge advocate for helping people overcome this because of my background with this ugly, nasty beast! The best thing that's happenned to me has a very happy outcome for me because, I've finally found my dream job working from home for a very promising company that only hires people that have disabilities. The other part of this gift I've received, is that the Department of Workforce Development also provided me with everything that's needed to be successful at working in a home office environment. Mind you, it's been a LOT of work getting to this point! I've been unemployed for a very long time and I've definitely had a lot of hope, patience and determination. Like I said being positive and patient has to be something you've got or else, nothing favorable will happen. I wish you every bit of positivity and success in whatever it is that you'd like to find-

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  17. I had to resign my position as Vice President/General Manager at the age of 45 due to becoming Relapsing Progressive in 2011. I was very fortunate that my company had a very good long term disability policy. I also was found entitled to SSD in less than 45 days. However: MS robbed me of my productive years; years when a person is hitting their stride and moving up and earning a higher salary in business. While I feel blessed to have what I do this article is well rounded in pointing out that the cost of healthcare and the fact that life goes on post work is spot on. We still have mortgage payments or rent, utility bills, car payments, life insurance and the list goes on and on that have to be paid every month.

    My wife is my primary care giver so she was forced to retire from teaching to assist me when I need help. I have put chair lifts into our home so that I can access all floors, at great expense. Health insurance is nearly $1500 a month for the two of us. Then you add in medications and it goes up.

    I spent ten years as a human subject in clinical trials at UCLA MS research. I was diagnosed at the age of thirty and immediately went into trials. When I was diagnosed in 1995 there was only one FDA approved treatment for MS, Beta-Seron Interferon Beta 1b. I went through clinical trials with Thalidomide, Linomide, Avonex as well as some small research with Rebiff and Copaxone, or as we called it then Cop1. There have been strides made over the past two decades in treating the RRMS population. Unfortunately it is important for those of us with MS to plan for the uncertain future this disease holds. Multiple Sclerosis will in a very, very large number of cases become progressive so it is important for the newly diagnosed to start planning for this very real possibility.

    If there is anything I have learned in my now eighteenth year battling MS, you need to plan for the unexpected. I have seen far too many people stick their heads in the sand and say, “That will never happen to me” until it does and the results can be devastating.

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    1. You should be getting medicare as you have ssdi........check with them .......it will cover you....of course you will still have to pay out of pocket for your wife........if obamacare stays .......it will be a big help for your wife's insurance needs

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  18. I've always had health insurance, but one day, during the two month period that I wasn't covered (I lost my Medicaid coverage when I moved out of state), I found myself crying over having to make the decision to go to the hospital when I developed double vision and couldn't maintain my balance. My ER doctor told me that I had a better chance of getting a quicker and, in the long run, cheaper diagnosis if she admitted me. 1 week and 3 IVSM infusions later, I ran up a $16,900 bill.

    My first visit to the neurologist that treated me in the hospital cost $300 out of pocket. My follow up visit was $150, just to get my diagnosis and a prescription. It took me two months to get approved for the Betaseron Patient Assistance Program. While I was waiting to get approved for health insurance, I paid $125 per visit to my PCP and told him to order a liver panel and a CBC at $75 a pop so that *I* could monitor the effects of the medication that he had very little knowledge of. I've thumbed through a lot of blood work and lab data analysis seeing as how I'm currently a nursing student and well... desperate times, desperate measures, right?

    5 months after my diagnosis, I finally got insured. My problem now? I'm getting slammed by collections agencies for that $16,900 hospital bill. I've had excellent credit my entire life and I've never had to take out a student loan and I now have to consider the possibility of filing for bankruptcy.

    MS itself rarely gets me down. At most I took off 3 days the entire semester to deal with symptoms or medication side-effects. I still smile at my patients when my joints are aching or when I'm running on very little sleep because of night chills. It's the financial burden of MS that has me riddled with anxiety and fear for the future. That I can't fake a smile for.

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    1. Hi Mary Ann,

      I was in the collection industry for 30 years. Here is what you need to do. Call the hospital where you were treated and ask to speak to the hospital administrator. Don't take no for an answer. Tell them that you where in their hospital due to a diagnosis of Multiple Sclerosis. Remind them that stress is very bad for people with MS and that the stress of the collection agency is really impacting your life and health.

      Remind the administrator that you have been diagnosed with a chronically degenerative disease of the central nervous system. That it is incurable and terminal. That you need their assistance in this matter. The collection agency is liable under federal law to comply with the FDCPA (The Federal Fair Debt Collection Practices Act) and that you feel that your rights have been and or are being violated. You also have protection under the ADA (The Americans with Disabilities Act.)

      Tell them that not only are you having to deal with the devastation of being diagnosed with this hopeless disease but now your life is full of uncertainty because of the actions of the agency and the hospital. Then ask that the hospital take the account back from the collection agency and that they forgive the debt. Explain your financial situation and the devastation that all of this has and is causing you.

      Put it in writing to the hospital as well as the collection agency and carbon copy the Federal Trade Commission, www.ftc.com. Let them know that you are not trying to avoid a just debt explain your situation and how you came to be uninsured.

      If they refuse to assist you then go to the FTC website and file a formal complaint against the collection agency and the hospital. Also contact your local chapter of the MS society they can help you get debts forgiven or assist with paying the debt.

      I hope it works out for you.

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    2. Mary Ann, I worked in hospital administration for many years and I can tell you Roy's advice is excellent. I would add that the hospital should have screened you for charity care. If you qualify, you do are not responsible for that huge bill and the hospital will get partially reimbursed. So I would mention that as well when you contact the hospital. I am shocked they did not do that. At my facility it was routine for uninsured patients.

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  19. This really resonates with me because my insurance, BC/BS in NoVA, has a Rx max yearly benefit of $1500. Before my MS diagnosis, this was sufficient, afterwards, it doesn't even cover one month's cost of any of the interferons used to treat MS! Our deductibles were also high as we were healthy adults and didn't anticipate MS coming along when it did. I cannot change insurance providers until 2014 and even then there is no guarantee that premiums wil be affordable. We are self-insured and our premiums are over $1500/mo excluding dental.

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  20. Had my school district not implemented Long-term Disability coverage a scant one month before the progression of MS forced me to use it (as a single parent at age 44)I would have had to be supported by the state. My hope was that my sons would want education so much that my inability to finance it would not preclude them from pursuing it (prayer answered)! However, contributions to my retirement plan also ended at age 44 which makes my pension, almost laughable, and has also meant reduced Social Security benefits, which seriously impact life now, at age 70! Most people dealing with chronic illnesses are forced to make decisions in the present that can have devastating implications for the future. Such is my situation now: fortunately MS symptoms have all but disappeared since 2002 but choices made along the way have compromised much of my health. On the surface, most outsiders would have no reason to think about many of the issues, other than what can be seen, a majority of persons with MS face. Perhaps we, persons affected by MS, are guilty of that too...

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    1. You are so so right about making decisions about the future are difficult for everyone but when you have ms with all it's uncertainty nearly impossible........i too had to leave work early which will definately effect my retirement......but i had no choice.......i am trying to save for the future now.....by living below my means to save money for when i reach retirement age...as i will lose private insurance disability benefits then and collect my pension and 401k which have been greatly impacted by leaving the workforce early........

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  21. My husband went from full-time to maybe 1-2 good hours a day in the span of 2 years. He never took the DMDs, deciding that a 1 in 3 unproven chance of help wasn't worth the side effects.
    What did help him was CCSVI surgery. So far, 18 months post-surgery he is once again enjoying full health and activity. The only symptoms that still affect him are heat intolerance and 20/30 vision in the eye that was legally blind due to optic neuritis. The 20/30 really gets me, because without MS I have worn glasses since I was 13!
    I encourage everyone with MS not to give up and to get tested for CCSVI. It has made all the difference for my husband.

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  22. This article brings up an important topic, one that I have been worrying about since my husband's diagnosis. But what precisely should we do to prepare? The article talks about what the extra expenses could be (insurance premiums, home/auto modifications), but nothing really on what steps we should take to prepare for them. My husband still works full time and makes a good salary. I have a secure job with great benefits. We save as much as we can. I would be grateful to know what else we could do to build up that safety net.

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  23. Hi Joanna,

    There are several steps that you and your husband should take to protect yourselves in the event of total disability. The very first thing is to find out if your husbands employer offers a long term disability policy for its employees.

    Long term disability insurance is a policy that protects a certain percentage of your husbands income should he become totally disabled. As an example: lets say that your husband makes $120k per year as his salary. Most long term disability plans protect between 60 to 70 percent of the annual income that your husband earned in the previous year before he became disabled. The policies usually have caps on the maximum benefit that would be paid to the insured. They also have employee qualifying groups. Executive and general employee. Lets say that the cap on the long term disability policy is $15K per month and the policy protects 60 percent of your husbands income. That would mean should he become disabled due to MS and he was covered under long term disability insurance he would receive $6k a month. Most policies allow the disability company to offset Social Security Disability payments. However in most cases the benefit is guaranteed to your husband (as long as he is disabled) which in the case of MS is incurable to retirement age for social security. This will vary based on the year he was born. This is the most important part of protecting his income should his MS become progressive.

    If his employer does not have a LTD policy he should inquire with management or HR about the company offering one. Most group long term disability policies have no medical questions and cover the employees no matter what their health situation is. Where as if he tried to purchase a long term disability policy on his own he might get it but it would exclude disability due to MS if he could get it at all. This type of insurance is not covered under the current healthcare law so you can be denied this type of insurance based on a preexisting condition.

    From there you should get with a financial planner to discuss life insurance as well as short term and long term care prospects. You also will want to talk with the planner about a living trust as well as living wills and the dreaded conversation about DNR's and things of that nature. By doing these things you can be prepared in the event that your husbands MS does take his ability to work.

    I am now 47 years old and unable to work in my profession of over 25 years as a high level executive. If it had not been for my former employer having group long term disability insurance my wife and I would never be able to live the life that we have today. I am thankful each day that my employer offered the insurance and covered me at no cost to me. I never imagined that I would ever need it and then literally over night I did.

    I hope this helps you out.

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    1. What great advise......i have had to leave my position as a corporate accounting analyst and my employers paid ltd has been a god send and yes my is offset by my social security.

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    2. Thank you, I was just trying to be helpful. It is true what Joanna said, the society talks about the problems with MS but doesn't give good clear assistance in financial planning for us.

      All the best.

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  24. For those receiving SSDI, what problems do you have? I have the problems listed on the ssa.gov site, but I have been denied twice. The first time I didn't appeal because I was blessed with a job from home, but I have since lost that one since I had another MS attack and experiencing chronic fatigue that Nuvigil can't help. So, I decided to reapply, I was denied, I have appealed but I don't know if I will be approved. I've had MS since I was a teenk, but wasn't diagnosed until I was 27. I never had job that paid over 30,000. Would it even be worth it?

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    1. I applied last year after the state pretty much forced me out of my job. I was told because I was 36 and had education I would eventually end up in front of a judge because I would get denied and have to appeal. I got approved in 5 months. I had a letter from my Neurologist and my PCP stating I was at the point where I could no longer maintain employment. I also got my MS service connected through the VA and provided that paperwork. Fortunately for me, all my meds are covered through the VA. I took Copazone for two years. But I got tired of feeling so crummy all the time so I stopped all my meds a few months back. And amazingly I found that I feel a lot better.

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  25. I wrote one comment but I don't think it worked. I'll try once more.

    I had a small business and it was crushed in the '08 crash. It failed in '09 and I was diagnosed with RR MS in late '09. By 10 I lost my home before I could sell it and recoup the 60k I spent re-modeling it from '05.

    I got SSDI by 11 but it was only $800/month. Now I live with my mom.
    I did buy a tiny lot near my dad.

    I want to get a mobile home there & start a VERY small business. I'm a gardener so I'd raise non-GMO veggies. I can't make much or I'd lose my $800. FEMA trailer could go for 8k to 10k & would work fine for a few years.

    I want to find grants for farming. But most seem to be non-profit or for colleges. It seems to hard to for a non-profit.

    I'm a DIY guy so I'd love to build my own home. Straw bale home, alternative energy, & re-purposed materials.

    Any ideas? I started with my Senators office. I could do a lot with $70k, since a few farmers up there would donate equipment & materials to me.

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  27. My mom was diagnosed with MS 10 years ago this month. Just one of her scripts cost almost 5,000 dollars, thats for a one month supply.

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    1. Yes they are soo expensive........have 2 that total 6000.00........hopeful obamacare helps with these cost.......they have already impacted how much of a premium dollar must be used to directly pay claims......

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    2. I have MS and have been in a rough patch since April or so. I have discovered that the pharmaceutical companies offer financial assistance and I have been approved for free medication from two companies. I think this is fantastic. Although I am still looking for assistance until I am through this "rough patch" or "exacerbation, as I am single, I am very grateful that the most expensive of my 10 or so medications will be covered for the next year.

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