Dxd a year ago this month

[Jacee]

Hello everyone;
I was Dxd a year ago and so far I have only had a problem with losing vision in my left eye for a few days. The Dx was head spinning quick and I got on Avonex right away. I feel lucky but the Dr can't give me any guidance as to what the future may bring. She did say that I do not have the aggresive form "yet."

Not knowing what the future brings is the scariest for me. I am 55 and wonder what I can do financially to prepare for when I cannot make a living. My job is very physical, so I am not sure how long I will be able to have ins. and an income.

Can anyone suggest resources that may help in financial planning?
Also, I was looking for others that may be in my situation or were Dxd late in life.

Jacee

[Cat Mom]

Hi Jacee and welcome. I don't live in the US so I can't answer your questions but check with your local chapter of MS Society and see if the offer any financial planning seminars. Ours does one each year at tax time and it's super informative.
Jen

[JerryD]

Hi Jaycee,
I was diagnosed with PPMS about 4 years ago. I am now 54. I have been made miserable by this disease. By the loss of work, by the loss of mobility, by the lack of restful sleep, by not knowing what is coming next etc.
I am a hopeful guy, but I don't think there is any hope in the near future. Just little baby steps (band-aids).

[dalechilders51]

Hi jacee, I was dx'ed 12 years ago and you right to think about insurance and employment now. I'm 62 and fortunately had LTD policy in place. I would ask for recommendations for a financial planner and be really picky in hireing one. Make sure there are no conflicts of interest or hidden agendas. Maybe ask your lawyer or accountant for names. You may never need the information But better to have it in case. Take care Dale

[Jacee]

Thanks Everyone

JerryD;
I am really sorry to hear that. Your story is what scares the hell out me. I do wish you the best. I have only just started to read the posts here and actually feel guilty. For my symptoms have been modest as of yet.

I am not yet worried about being totally disabled in the near future though I know there are no guarantees, but I am not sure that I would be able to get another job that pays very well or that I could even get insurance.

I have about enough in the bank to get me through almost a year of what is know here as COBRA ins. and nothing else.

So JerryD can you tell me how hard is it to get help here when things start going bad. I know its not pretty but if anyone has any suggestions I would appreciate the input.

How hard is it to get on SSD? Also how hard is it to get on the Medicaid when you can work but can't get insurance and have a disease such as this.

I will be contacting my local MS Society office soon but I guess I was looking for a little hope but lay it on me whatever, please.

Thanks for the welcome and wish the best for all
Jacee

[22cyclist]

I am 42 an on SSDI + Medicare. You will need to go on both in order to get on medicare depending on which state you live in. The Affordable Care Act that goes in to full action in 2014, makes it so that low income people can qualify for medicaid however, some states do not comply with this rule (mostly those with republican governors) and do not accept the money from the federal government to allow for this part of the program to go through. So you have to check in your state if this is in place. Otherwise, in 2014 you will be able to buy insurance on the market because MS will no longer be a preexisting condition, or preexisting conditions are no longer a problem.

It takes different amounts of times for different people to get SSDI. It depends on your amount of disability, your EDSS score, your medical records etc. But, when you get SSDI you get Medicare, you don't get medicare without SSDI.

Hope this helps

Lisa
Moderation Team

[Jacee]

Thank You Lisa

I live in Wisconsin and we do have a Rep. gov. and they have the majority in the state senate. They are bucking the new health care system so I hope I can continue working this job for as long as possible.
Thanks for the info.. I was hoping that there were other health insurance options. The new program "Obama Care" would be good for those that cannot get health insurance through work. Maybe they will embrace it eventually. We can hope.

I will continue my research and saving every penny I can. As well as trying to get my home updated so that it will be low maintenance and energy efficient. I don't know about preparing it for handy cap access, because this disease effects everyone so differently. I see that people are talking about pain, mobility problems, visual issues and mental issues.

I see people talking about immediate problems and disability and others that are in the military and are still active. I am older and understand that with age the disease moves quicker. I have been lucky and blessed in so many ways so far. Quick dx and acceptance so I got on the treatment right away before major problems crept up. So I will look around here and other places for info.
Thanks again