support for the people who are have financil disability

    • Anonymous
      September 14, 2006 at 3:18 pm

      there are manypeople out here that are in trouble. there are many differnt things that help us. But unfourtunatley there are no organizations/groups that are close enough to help us get the treatments and support that we need. can someone help to figure out how to get a local chapter here to get awareness to the public and to our insurance agents also state and local governments. I am aware that people have places that are close to them that are qualified to help them. I for example can go south for 4 hours to get treatment(wow gas prices,and slow reactions when driving major traffic in Denver) or seven hours in the car to omaha or lincoln. well as you can imagine i need someone to take me and that means time off from work. well that means income loss and then what bills to put off because as you know this disease Costs lots of money. I know that I am sturggling to get all that I need for this disease what abouth the elderly I know that they barely get enough money to sustain them month to month from social security. So the poor people are suffering in pain and deciding weather to eat or to get treatment for their disease. any suggestions please help :confused:

    • Anonymous
      September 16, 2006 at 6:44 pm

      Have you checked into home infusions?? That drive alone should help you qualify for it. Quorum is one company that offers it, I know there are others. Also for medicine help this website [COLOR=RoyalBlue]needymeds.com[/COLOR] (cut and paste the address). That site has many links for help also. Lastly check with your County and City, there are usually programs for help. I hope that helps.

      Jerimy

    • Anonymous
      October 23, 2006 at 10:39 pm

      [COLOR=red]What state/county are you in, maybe I can help. I’ve been fighting with some success.[/COLOR]

    • Anonymous
      October 29, 2006 at 4:58 pm

      wow. i live in pennsylvania and my state is horrible with any kind of assistance. i’m now permanently disabled and on social security disability, so i don’t qualify for medicare, medicaide, foodstamps. etc. i do have a working spouse, so the state told me i had to go onto his insurance policy which is an extra $500.00 per month coming out of his pay, plus co pays and deductibles for specialist and medication.
      although, i’m much better off than the elderly that have NO additional income and have to pay for EVERYTHING out of pocket.
      i have an old habit that has helped me greatly. i have a huge jar that all spare change goes into every day; and when something major comes up, i cash in the coins and you wouldn’t believe the amount of money you can save just by throwing change unto a jar each day. we’re actually taking a two week vacation for the first time in a long time, thanks to the spare change in the jar.
      i too had to hit the jar for co pays, deductibles, gas, etc. i know it sounds like a corny idea, but it works. i don’t know much about you to help you with financial aid programs. are you married, living alone, etc.? i know all of the agencies i called at the time. if you can tell me your status a bit, maybe i can help to steer you in the right direction to get you some financial help. i was a full charge bookkeeper and human resources manager before gbs took all that away from me. if you want to send me a private message i will do anything i can to get some assistance for you.
      with much love and hugs,
      deb

    • Anonymous
      November 8, 2006 at 1:34 pm

      hello I am married and live in the wonderful state of nebraska scotts bluff county. there are many things that could be benificial but the main on is to get the word out about this disease and get some organization together like the MS community have. awareness will be our sucess. I have a friend with MS that was helped by their local chapter to get him and his family into a handicapp home and a vehicle so they can get around easier. it wasnt a hand out it was assistance to find the right resources and people to get them what they needed. and after they were in contact with the owners of the home and the manufacturer of the vehicle yes they were given great discounts. and the Ms foundation has helped them with medical bills and support in dealing with the disease. I would love to get something like this together. but not sure how to get this done. my nuerologist is in denver she dont make me go to her unless she really thinks that I am in need. 3 and 1/2 drive to see her. so I have a direct phone number and she dosent charge for these repeated phone calls. she is very helpful and this is a simple way to help us out with costs. this is what I am talking about.. thank you!!

    • Anonymous
      November 12, 2006 at 1:42 pm

      Deb,

      Once you are on Social Security Disability, it takes 2 years for Medicare to kick in, I think that’s how long it takes to get Medicare. How long are you on SS Disability?

    • Anonymous
      November 12, 2006 at 4:19 pm

      Great thread!

      I got a lot of help thru my hospital thru a person that organized all my insurance, home visits and things like a walker and cane and bathing aids that I needed. They made all the arrangements for me to get handicapped parking etc. They also gave me some information on other things that might come up. I am interested in this thread too. I wanted to see how I was after a year. It was not called Patient Advocate but it was something that was like that. Each facility has them to help families work out problems. I have also called the hospitals for friends and they gave me the number for these members of their staff. Some are for persons under 50…some are for persons over 65 since each level is different they can assist you to get in touch with the right agency!

      If I think of what they are called I will come back and post her title.

      :p Blonde moment!

    • Anonymous
      November 25, 2006 at 6:00 am

      There are a number of hurdles, and eventual adjustments many of us make when faced with long-term disability or chronic illness. I moved closer to my support system for a long time, put my personal belongings in storage and paid assistants that still come to help me to do what I want to do.

      Regardless, the local Red Cross may be able to help with transportation. Your Independent Living Center may also be able to help with advocacy, resources, and ideas to help you restructure your life more comfortably.

      Additionally, please learn about your rights and responsibilities under ADA, FMLA, FEHA, and the Rehabilitation Act of 1964 as there is job protection for time off from work for medical treatment, and medical related incidents with your health.

      I suggest calling the Job Accommodation Network (a government agency providing commonly considered “reasonable” accomodation information and resources to people with serious medical conditions. Taking this information back as a source from JAN is credible to the employer. You may find new options for your situation that you can negotiate with the employer, while pushing back on your medical provider to come to your home for infusions (as suggested by the previous poster).

      The reality is for those of us with rare medical conditions, we must learn to be our own advocates, be resourceful, and to provide sensitivity training to those around us. In doing so, we help others understand how we can continue to fit into the world, and the next person they meet that doesn’t fit the stereotypical mold, we can hope they (and we) have learned how to be more flexible in joining hands to help build a more accessible and tolerant world.

      Best Wishes,
      Disability Program Navigator

    • Anonymous
      January 7, 2007 at 12:19 pm

      It is hard to find help especially if you are single, like me. I have one son who is 12 y/o and I am sole provider for the money in the house. I have applied for SSI, SSA, food stamps, Medicaid, LEAP, etc. and still have not heard of their decision. All those people need alot of things and it is hard to get to them when you are in the hospital, like me. It has been 2 weeks and still have not heard. I have heard from other people around the area of Valentine, that the only way to get help around here is if you are native american and your last name reflects that. Otherwise, you are basically screwed!! Is there other places to go or have I exhausted all my options? It would be nice to have a support group meeting with others and be able to talk about the frustrations one-on-one? Is there any support groups that get together to hold meetings and/or workshops regarding GBS? I only know of one other person here in Valentine who had GBS, but he is a 73 y/o male who is married. My boss is holding my job for me and she is also my PT/OT therapist. It sure is nice to live in a small community, but the draw back is that there is no support groups to meet one-on-one, any ideas?
      Talk to you later,
      Teresa

    • Anonymous
      January 8, 2007 at 1:17 am

      Theresa,

      Regarding options for support groups, GBS is so rare, it’s sometimes helpful to think outside the box, utilizing the local support of a spinal injury group, MS Society, or a Myasthnia Gravis Foundation meeting. Many of the mobility and endurance challenges are similar in terms of functioning in the world goes. Otherwise, there are sometimes phone conference support groups for and online support groups (check out Yahoo.groups). These are boards whereby you can post questions and receive responses. It’s important to remember safety practices and weigh the type of information you glean, referring back to you medical doctor(s) for medical decisions. The internet does provide a great source of support and networking. Glad to hear you job is waiting for you. Best wishes!

      Linda

    • Anonymous
      January 8, 2007 at 1:19 am

      Theresa,

      Regarding options for support groups, GBS is so rare, it’s sometimes helpful to think outside the box, utilizing the local support of a spinal injury group, MS Society, or a Myasthnia Gravis Foundation meeting. Many of the mobility and endurance challenges are similar in terms of functioning. Otherwise, there are sometimes phone conference support groups and online support groups (check out Yahoo.groups). These are boards whereby you can post questions and receive responses. It’s important to remember safety practices and weigh the type of information you glean, referring back to your medical doctor(s) for medical decisions. The internet does provide a great source of support and networking. Glad to hear you job is waiting for you. Best wishes!

      Linda