This current attack is not responding to steroids or neuropthy meds. I've been using a walker but can't go far or carry anything. I find out about a wheel chair, hopefully, next week. If I'm only approved for a heavy one it won't help. I don't know how to do things with a wheelchair but I can go further and longer more comfortably. I haven't been able to go to the laundry mat, grocery store, clean, cook or take care of my dogs. A friend drove 7 hours round trip to take them.
I realize and accept (?) now that I cannot do this on my own anymore. There must be resources out there to teach me and/or help. Isn't there? I don't know how to get Medicare/Medicaid to help or what they can help with.
I can have my tiny travel trailer moved close to a friend or one of my two daughters. I'm waiting to hear back from them to know if they can help me on occasion. Problem is trailer is over full and dirty and I can't get rid of things and clean by myself. Then I have a store room full of stuff I don't need. I'm not physically capable of dealing with it. There must be organizations or other assistance that can come be by my side and do the physical stuff. They can have the stuff (very little I want to keep) or load it in my truck and I can donate it.
weakness/fatigue (exhaustion), tingling, pins and needles, numbness, difficulty with coordination and balance, barely walking with walker, problems with speech/swallowing/choking, tremors/jerks, blurred/double vision. pain, dizziness/vertigo, fecal & urine urgency, problems with memory/brain fog/attention. depression, headache, hearing loss and buzzing, heat sensitivity, insomnia.
Acceptance is hard. I know there's people like me, people that have it much rougher. How do I learn how to live this way? How do I earn how to do things and improve my life? It's difficult for me to ask for help.
Has your md said that you are disabled? The md will have to add paperwork to your application for medicare and medicaid. And depending upon how less able the md says you are will determine if you are eligible for home aid or meals on wheels. Be sure to let the md know you are applying for medicare so they will be prepared for the paperwork.
For social security and medicaid the phone # is in the front of the phone book, you can call them and begin the proccess. If oyu have a pension or some savings speak with a disability lawyer first before making any calls, to find out how you can keep some of what you have.
call the ms society, they will know of agencies in your area that will help take your stuff, or call goodwill or the salvation army, they will come get it.
Asking for help is a learning proccess, you will try to do it all yourself and afterwards feel like you have been run over by a truck, then you will effectively learn your limits. There are some things we must learn the hard way.
Please remember to rest before you get tired, it will be easier to reboot your engines that way instead of running out of gas.
Also know, being disabled or less able is a sometimes or somethings for us. Some day you will work better than others. Pushing too hard with ms is probably not such a good thing, learning to pace yourself makes you less unable.
I have found that it is better to ask for help with those things that I desperately need, not the things that I want. Asking for too much help gets us to be too dependent and puts an excessive burden on others.
I am on Medicare/Medicaid 100% disabled.
It sounds like you have a lot going on right now. In addition to the support you’ll find on this page, the Society has resources and support they may be able to help. Please give us a call at 1.800.344.4867 (M-F 7am-5pm MST) to talk to an MS Navigator.
MS Navigator Stephanie
Dear Jessica, I have been there!! I was diagnosed in 1997, but kept working / traveling until 2004 ( it should have been sooner, but I was really stubborn about acceptance. OK, so here's my advice (for what it's worth; everyone's different)
- Get on disability. It's best to get a letter from the doc that diagnosed you , indicating that you are no longer able to work.
- after being on disability for 5 months, you'll be eligible for Medicare.
- About your extra stuff: If you could use some extra cash, contact a group that handles "estate sales' . Google it and check them out. They will do all the work, and probably take about 30%, but it's worth it. If that doesn't work out, then the Salvation Army will do pickups for donation, and you can get a tax break.
- Try to get some physical / occupational therapy. There are in-home type groups that will come to you; but you'll probably need to be on Medicare.
My heart goes out to you. You might want to check out some MS groups on Facebook. They are great for some ideas, and support.
Hang in there!!!
Contact your local churches especially ones that are more evangelical and/or modern/newer. We LOVE to help people! I'm in PA or I'd come out and help. I poop out after about 2-3 hours, but we could get a lot done in that time. Lots of luck and prayers headed your way.
I don't know if I can offer any information that will be of direct help, or if I can completely understand what you are going through.
I was diagnosed with M.S. at age 20, my initial symptoms were enough to get me a disabled classification. I was almost completely paralyzed and talking, swallowing, other 'normal' things were hard for me to do. Help was both easy and difficult to come by. At times it was so difficult that I spent about 8 months of my life homeless and nearly starving to death. When my mother (who lived 3 states away at the time) found out what was happening to me, I finally started to get the help I needed.
She provided me with a place to live, and helped to pay for me to go to college to get an A.A. and a B.S. degree (I am also a high school dropout, so getting more education was essential as my body would not let me do the physical labor I was used to). At the time, that was all the help I could really get. The M.S. Society didn't even give the chance to people who had M.S. (at the time) to apply for scholorships and such (only children of M.S. patients at the time).
About 15 years later I am still relying on help from my family (almost all of it from my mother) to get by. I feel that there just aren't the resources to get help from most other places. Heck, I am 35 years old, have two college degrees that I earned while being disabled and involved in local not-for-profit(s) (serving on the Board of Directors for some, just helping out with others) and I can't get an employer to even glance my way (I refuse to lie about having M.S., which alone makes me 'toxic' in a society hyper focused on cutting costs and increasing profits I.M.O.).
Being disabled for me and having to learn how to live with it means having to accept I have to be more independent because I can't even seem to get the help that able-bodied people can get. An able-bodied person can more easily get a job (there are a lot more jobs open to those with able bodies) to pay for a moving or cleaning company to deal with some of the issues you've discussed. Private taxi or ride-sharing companies can be expensive to use, which is absolutely a shame since those of living on fixed incomes can seldom afford their services (but people in my age group where I live have no difficulty using them just to go out for a night of drinking).
Unfortunately, disabled people without strong support communities (that have the time and resources to help us) have to rely on money to pay people for the help we need. Have you considered setting up a 'GoFundMe' (or other service) account to solicit donations directly from people? Have you contacted the nearest local M.S. Society chapter for lists of resources that may be of help that they can either provide or show you who does provide them?
For me, living with M.S. and disability means having to rely on social and nonprofit services more than I ever wanted to (I always had pictured myself as independent, dropped out of high school just to work and make money to provide for myself).
With all of that said, I think of myself as rather lucky. My health (through intense physical therapy and being so young at initial diagnosis) has improved for the most part. I can walk many miles a day, just can't literally stand still for long without collapsing. My bladder doesn't really work (or at least the muscle the contracts around it to enable urination). I can't shut my eyes and bend my neck forward without my body collapsing underneath me. My arms have almost no muscle mass to lift or move things. I fall down a lot, which has led to a broken thumb and a flayed open arm in the last few months alone, not to mention the many bruises and minor scrapes and cuts.
One thing I absolutely do believe in is trying to find positives in life, no matter how big or small, to focus on. Focusing on the pain and torment led me to consider suicide many times as a young person. When I kept my thoughts on all the things I couldn't do, I could not even remember the things I could do. Also don't be ashamed of who you are and what you are going through. You are human being who DESERVES rights and respect, don't let anyone (including yourself) tell you otherwise. There is no shame in asking for help whether it be though an Internet page soliciting charity from others, contacting state/federal agencies to help you (not that I can neccesarily think of any at the moment), and getting into contact with groups that focus on specific health issues for help or resources (and remember, there are other condition-specifc groups that may not be able to directly provide help themselves, but have lists of resources that may be of some help; M.S. isn't the only thing that leads to disability, so other groups representing other types of disabilities may have resource lists).
I don't know how much any of this has helped, but I hope you can at least find something of value in my meandering reply. I wish you nothing but the best of luck and I am sorry that I have nothing else to offer.
All of my Best Wishes,
*Ignore this post, slow computer and shaky hands led to double posting, and I don't know how to delete, sorry :o(*
Do you have a MS Support Group in your area? That's a great resource.
Hi there I'm in the same boat as you right now as to sometimes I can't do anything on my own and then there are days I can get a lot done but what I'm learning to be the hardest is knowing when to do things and to Pace myself. I do get in home care and my nephew's the one that has been helping me out at times but I'm not really ready for to except the new situation I find myself. Getting spasms more and falls and I don't get out to often these days because I've been independent most of my life and I don't like having to ask for help from others but if you need to then I would recommend that you have someone that isn't related to you help you out because sometimes the lines and bondories are hard to manage and next is you need to put in for help through adolt service and the welfare office if you have become too this point and then also put in for disability if your Dr says that you can't return to work and you can't work from home I have a friend who's daughter actually worked from home doing answering service for a realtor I think. I hope this helps.
Hi Jessica...try and get Medicaid to come and evaluate you to get an aide. They come and asses you and how many hours you can get.
Hi jesJess my name is Bobby and I've been in the same boat so to speak as you. There are days I can't do much and days I can't even think to eat or cook for myself but then there's days that I can get out of the RV yes same boat as you!!! And I will try to get a few things done and in the end I feel better. The fact is to try a little bit when you are able and then except the things you can do when you can and then you will feel better and proud of yourself for it. The days are hotter already so you might want to consider waiting for the sun to go down and then try going out. But never go out and try to get it done in the middle of the day when it's hot it will cause your symptoms to get worse and you don't want that. Staying cool is important aspect of your health issues as well I know a little travel trailer is hard to live in and it gets hot easier than a house. Maybe your daughter can help you clean up the trailer. Can you stay with her in her house? Also they have programs for disabled depends on were you live in California they call it " in home care " I resive it myself and they will have someone come out and help you. Now just so you know I have 6 dogs with me now so I understand about the animals to I've been attached to them since I was a kid ops I still act like a kid at times I believe because of the ms I have a hard time with emotional things and unstable at times. I hope that you are well and that you get some help.
Try your local senior center. They know how to help disabled people. Your town must have a resident social worker who helps people in need. Call town hall and a tell them you need help.