How do we survive???

[fishnbuddy]

How do people with MS who can't work survive? Where do we go to live? How do we afford food? What if your only income is social security totaling under 1k per month? How do we afford utility costs to keep our lights on and refrigerator running. How can we afford a car or even bus fare? I ask because I may soon find myself where my SSD is all I have coming in and no place to go. What do we do? End it?

[jazzgirl]

http://www.state.ny.us/

Ending it is not an option! Check out NY state's official website for the information you need, Don. START NOW because you know these things take time and patience and I don't know about you, but patience is not MY strong suit!!

I'd also call your chapter of the National MS Society for some help getting answers. Here is the web address for the NY chapters of the NMSS:

http://www.nationalmssociety.org/fin...te=NY&zipcode=

Keep us posted, Don! I, personally, would like to know how you make out with this!!

[JoanFrances]

hello Don

I know that finances can add stress, I live that way too, but Ending it all is a permanent solution to a temporary problem

There is help out there. Take on step at a time

Sometimes we have to go minute to minute, but we can get through it.

Jazzgirl gave you some address to contact. DO IT!

I have had MS for 20+ yrs and I am still here. Yes I had my challenges and will have more, but, I have had much joy too. The joy is what I like to focus on when things get tough.

You can't try to fix it all in one minute. But you can take care of business. This country has programs for everything. Get a social worker ASAP.

Depending on our age and if you already have disability, you can go to senior services. They have very knowledgeable people there.

You can't just throw the towel in.

Do you have family, friends a pastor, anyone who can give you daily support for your emotions?

Please come back often and update us, that is what we are here for. We all walk this journey, and you will find that everyone here is more than willing to share information with you.

Vent as often as you need to, but you have to take control and not let this control you.

Good luck, and again Come back and let us know how you are doing. God Bless

[nightflyer]

How do people with MS who can't work survive? Where do we go to live? How do we afford food? What if your only income is social security totaling under 1k per month? How do we afford utility costs to keep our lights on and refrigerator running. How can we afford a car or even bus fare? I ask because I may soon find myself where my SSD is all I have coming in and no place to go. What do we do? End it?

Another option might be area churches...they are very helpful around here. Food pantry? Goodwill? Is there a 211 in your area for getting area help?

[nightflyer]

For temporary assistance and food stamps for Calverton

MEDICAID EAST
RIVERHEAD CENTER
893 East Main Street
Riverhead, New York 11901
New Application (631) 852-3710
Open Cases (631) 852-3570

[mjan]

Hey Fishnbuddy I hear your concerns. ((( HUGS )))

Your issues are VERY REAL and can scare the pants off of one. Social security was never meant to be the primary income..sadly though it is for so many.

You probably qualify for public housing. Elderly and disabled get in first. Its based on your income so you can afford it. Often if offers one free meal or donated food.

Call 211 to get the number/address of the agency in your city. There may be a waiting list but dont let that discourage you. AND you may qualify for other assistance as others here have mentioned. Church services, Social service agencies..social workers.. free clinics for meds..lots of places.

I even thought of renting to a needy roommate so we can help each other out. There are ways...look at how the MS World folks have and will continue to reach out to you. SEE how quickly people respond once they know your need?

What is your faith, spirituality or religious beliefs? USE your faith.. ASK for help..and SEE how you will be given the resources.

And in return, are you able to volunteer doing anything? You might get into a position where they give you a stipend...or part time work, like licking envelopes..filing..making calls..many other kinds of volunteer work.

People and progams can be generous...if .. they can find you!! Call 211..

Let us know how you're doing..and yes..patience will be rewarded..but dang.. what a test eh?

Warmly, Jan

[Sequoia]

I have a good friend (online) with MS who's 40 and has been living on SSD for years.

No, he can't afford to keep a car, and he has very little discretionary income, but he does have an apartment, food, medical care, electricity (including air conditioning) and internet.

Planning ahead is important. It can take a while to get Section 8 housing, and there's some lag time between application and approval for other programs as well. The exception is food shelves...you can usually get help there right away.

For transportation, many communities have free or nearly free mobility vans that will pick you up, take you where you need to go, and bring you home again. The only catch is that you have to schedule your rides ahead of time.

So, all in all, while it's not easy, living on just SSD is doable.

Please keep coming back...we understand, and we care.

[fishnbuddy]

Thank you all for some great info and advise, but I'm going to spell it out and then tell me what info I need. The problem is not directly MS but it's the economy and it's my wife. She fights with me over nothing, 2 years ago we had to start renting a room in our house to strangers because we cant afford the mortgage and the bills on top of it, she hates every room mate we had, until the most recent one. Now that we have someone nice things got better for a few months but now she's fighting again and I can't take it, I want to leave! If I move out can I still get assistance? Even tho we are still married? Or do we have to get a divorce? I would rather not

[Bob698]

It all comes down to adopting a new, efficient, lifestyle.
It sounds harsh at first, but MS tends to be a life changing disease. You didn't ask for these challenges but you'll have to learn to cope.
The first thing I did was seperate the nessesities from the luxuries. Having a vehicle was going to be tough. I wasn't driving as much as I used to since my eyesight got worse so I sold it. No more insurance or upkeep to worry about.
Housing was going to be a real challenge. Having less that 1K a month in funds and paying 700 a month rent wasn't going to work. In my case having my own appt was a luxury I would no longer be able to afford.
It sounds drastic, but I needed to get out of Maine. Their system was good at ignoring me but I had been in contact with an old bud from the Navy who was also going through some tough times and found out how the VA was supposed to work. Maine was no longer an option but Iowa looked pretty good. Its not an ideal situation if you apply the old rules (their youngest child does a pretty accurate immitation of an air raid siren) but we get by pretty well. What I contribute in terms of food and rent helps them survive the month. You could try something similar with friends or family. You could also consider going more rural to help with rent costs but going "commune" makes a lot more sense if you're dealing with MS.

[Bob698]

Thank you all for some great info and advise, but Im going to spell it out and then tell me what info I need. The problem is not directly MS but it's the economy and it's my wife. She fights with me over nothing, 2 yearsago we had to start renting a room in our house to strangers because we cant afford the mortgage and the bills on top of it, she hates every room mate we had, until the most resent one. Now that we have someone nice things got better for a few months but now she's fighting again and I cant take it, I want to leave! If I move out can I still get assistance? Even tho we are still married? Or do we have to get a devorse? I would rather not

You could always try moving in with the room mate.
Kidding, but I think both of you need to focus more on reality. I went from being an electrical engineer to losing almost all of my possesions in order to accomodate this disease. If MS was easy everyone would have it.

[Jules A]

I am so sorry that any of us has to deal with this!

These concerns are exactly the reason why I'm working all the time now to put money away for the worse case scenario thanks to MS.

[JoanFrances]

Thank you all for some great info and advise, but I'm going to spell it out and then tell me what info I need. The problem is not directly MS but it's the economy and it's my wife. She fights with me over nothing, 2 years ago we had to start renting a room in our house to strangers because we cant afford the mortgage and the bills on top of it, she hates every room mate we had, until the most recent one. Now that we have someone nice things got better for a few months but now she's fighting again and I can't take it, I want to leave! If I move out can I still get assistance? Even tho we are still married? Or do we have to get a divorce? I would rather not

Living in a stressful environment is not helping your MS at all. I am sorry to hear that you are going through that. I am having much the same problems.

My dh's son is plotting to get my dh to move to Vt to live with him. So the tension is pretty hard to deal with, along with the financial fears.

MS and stress are not good partners.

If you need to move because of the situation at home, you can call your local attorney hot line for a referral to an attorney who will work for you for free. At least you will be armed with the correct legal information in advance.

A legal separation is what you may need to file. That is not divorce, but will protect you and the assets of the marriage, and still make you eligible for assistance.

Good luck Dear, and please do come back to let us know how you are doing

[fishnbuddy]

Thanks everyone but we just had another fight and just dont know what to do. I keep telling her I cant take it but she keeps coming back with more and she trys to say it's my falt.

Whats the use!

[lilrooster1976]

I feel your pain!

I just lost my job last week on the day I returned from my LOA, I came back after 8 weeks, even though I should have taken 12, but it was inventory time.

I am trying for disability, and we are living off my wifes income. We have appointments with a Bankruptcy lawyer next week, and a disability lawyer coming up as well.

I have a neuro appointment tomorrow, even though I lost my insurance and we are going to talk to him a bout disability. I can't walk, or stand for more than 20 minutes without needing to sit, and if i sit to long I go numb.

We have no idea what we are going to do either, the bankruptcy will help, but we really need to keep our hourse and we cant do it on her income alone.

I am going to be switching meds tomorrow so that I can get it paid for 100%. We also have an 8 year old that has autism and ADHD and his drugs are going to cost me $200 a month and again we have no insurance right now.

There is help out there though if you know where to look. Try your local township trustee's office, they have a lot of info. Also try calling the mayors office, they too have tons of info, your local congressman's office can be very helpful as well.

Believe me that thought of ending it popped into my head for about 5 minutes....Then I took a look at my son and knew there was no way I could do it!

Your family, friends and loved ones will be the ones who suffer. Can you really even consider doing that to them? My wife and I have both been through the loss of a loved one "who ended it" and I can tell you it was horrible for everyone.