I am located in the states and am seeking supporting possibilities. When I attempt to explain my MS to people, they typically know someone and have an idea of the disease. Physical challenges are typically the case and are individuals with a supportive spouse, family or friend. If they have children, they are typically much older than mine.
I have no spouse, no family and no friend that is available. They have their own young families to care for and/or work. My children are still young—i got a late start.
Anyway, all people with disabilities are lumped with seniors as far as resources for assistance. I can’t locate any resources for people with children and especially thinking challenges.
I went many years before being diagnosed and accumulated a significant amount of damage on my brain that anyone would recognize. I plan to print a picture of my MRI once I relocate it—just had it and can’t remember where I put it. I will probably just grab one of my earlier MRIs.
All of this to ask if anyone has any suggestions for me? I am drowning in my confusion and close to losing my home due to my ineptness—lack of aptitude—regardless of the reason. I am so ashamed that I can’t, “get my act together” at the very least for my children.
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disconcerting
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I can only suggest contacting your local MS Society for assistance. They have grants for helping with housing and other financial issues. I wish you luck with your situation and everything will work out. Make sure you come here if you need to vent. Good luck.
I am trying again to work with them. I sought help a year or two ago and somewhere “the ball was dropped.”
I accepted that I have MS but I didn’t clarify my needs. Now that I am still failing at organizing, which btw was my line of work prior to diagnosis. I am reluctantly accepting what I can’t do.
My “work families”—friends from my employment prior to being on disability— continued to tell me how I could do what was needed. After all, i did computer support (teaching, placement, ergo, technical support, database creation, troubleshooting mac & pc software, hardware & networks, scripting and writing code some code) before the internet went public for the government and military.
How embarrassing when I couldn’t even login to internet accounts successfully two times in a row or mentally understand iOS, Android, Windows 10 or Leopard (recall of DOS & UNIX commands, let alone the BIOS).
I relied heavily on my brain and now i have a hard time getting from one room to the next without losing or forgetting something.
Can I ask you why you want to show your MRI I ask this because when I was told I had MS I foolishly told my job. That is when my job they decided then they would find away how to get rid of me. I wouldn’t give up for 7 years but in the end they won. I know you want to let everyone you talk too to let them know you have MS. Keep it to your self and I mean the people that are ciose to you is fine. I just saying you never know what your job is going to do. I know people say they are not suppose to do it but they do find away. I just don’t want you to be taken over the coal if you know what I mean.
Hi ssdw1958. I am glad that you were still able to work, even after diagnosis. I’m sorry that your work made a bad choice in trying to remove a faithful employee (you had to be faithful in my opinion because you felt compelled to be honest with them so they could better understand *you* & why best of intentions aren’t always fulfillable).
I think employers becomes fearful of lawsuits based on how easily people abuse our system and also because some people require more medical help down the line—not realizing they might be doing too much at any given time while on the job.
I tried to continue work, but my body said, “no more!!!!!” see the exclamation points They represent: pain, fatigue, cog fog, bladder non-compliance & depression.
The reason I want to have an image is to help the receiver of the information to better understand.
Anyone could say the weather is bad because they despise snow, but the next says the weather is great because i get to sled and have hot cocoa w/my friends. Seeing says it for itself and helps another understand🤞me better.
I thank you for your shared insight because I mistakenly told my employers and I totally agree with you. I complained of going blind in an eye and they persuaded me to see a doctor which led to diagnosis—be careful what you pray for.
Hi disconcerting this is ssdw1958. You sound like a very strong woman that has her head on straight. Whatever you do do not call DSS because they will think that you cannot handle your children and they will find someway to take them away from you. And you don’t want that to happen. Like others said you should call The M S Society to see what is out there for help. Just hang in there and do the best you can. Have a question for you at your parents around just to help out a little bit with your little ones. Like I said before we careful who you tell that you have MS. But you know that you can always speak to anybody on this site we’ve all been there someway somehow. And I know it really stinks that you don’t have a job I was let go when I was 57 now I am 59 and you can talk to anybody on here we never thought this was going to happen. And it really stinks it changes your whole thinking of what life is all about. But you were young you can do this just dig down deep and it will happen. Can you talk with any of your doctors they may have a way to help you. I hope you have a good day just look into your children’s eyes and that will keep you going.
Have a good day and you were talking about that snow well that is what it is doing right now and let me tell you I can’t take it any more where is spring 🌸🌼💐😎🙏🏼
I’m sorry you are experiencing cognitive issues. It must be hard with young kids and no support system.
What kind of help are you looking for?
Most importantly, do you feel like your children are in danger? If so, you should contact your local child welfare system. They should be able to assist you with services as they relate to taking care of your kids. They might also be able to recommend other services that you could use.
Do not call child welfare. Do call your local disability office. They have all kinds of services to help from legal, support for healthcare options, etc. The MS isn’t focused on these types of things. The org whose board this is, MSAA, is also very helpful.
Wow, I didn’t know that I had a local disability office. I happened to see an office a year or two ago that published services for people w/disabilities and seniors. At that time there were only one or two services advertised for people who weren’t senior citizens.
I am still blown away that I was considered geriatric for my pregnancies—anyone over 35—but I find it difficult to locate assistance.
I can’t speak highly enough about MSAA. I was excited to find this app by them. They were fantastic when I was originally diagnosed. I was in such denial because I had participated in many MS fundraisers when I was a kid with my family (my mom’s company was a sponsor). I thought I knew something about it, but therapies weren’t in place back then.
MSAA helped me to apply for social security and then I moved away to be closer to family who aren’t around anymore. 🥀 I didn’t think of still reaching out to them by phone. 🌞
Thank you for all your advice. I will contact both resources.
My children are not in danger. I am seeking help with organizing and someone coaching or helping me in the process. I think of therapy. If I have a stroke, I might receive occupational therapy to assist with eating again and physical therapy with holding a fork. (My mom had a stroke after brain surgery that didn’t go as planned)
I agree with TwoFacesofMS. A neighbor called protective services on me about 7yrs ago. I was appreciative that they could see all was fine, but people are so easy to point out faults and not lend a hand.
I think you are thinking in the best interest of my children. I am, too, which is why I am asking for help. Thank you for your advice, but services are the last people i’d contact. I will tell you that one later. 🤕
I was actually crazy enough to seek social services a year and a half ago at the advice of a friend. Social services made me hire an organizer, which I was so excited about to help me with my kitchen and bathroom the kids share.
I explained how my legs don’t work at the end of the day and I use a wheelchair.
They put all of my tiniest spices on the lowest shelf they could find that spins. I guess not realizing that the wheelchair would topple if I reached down. And that the spices would fall over and fall behind the turnstyle preventing use of the cabinet.
They tossed any food that the seal was broken although closed, such as a bag of chocolate chips that we did not use completely (because we only used a few at a time for pancakes), ketchup bottles (because we use two at a time so the kids don’t fight) having one for each end of the table. They even threw away meal rations that have a date far in the future for camping trips or for me to have fun with the kids.
They threw away all the manuals that were in a drawer together for the appliances in the kitchen: dishwasher, refrigerator, oven, and microwave. They tossed all my plastic lids to my stainless steel bowls. Used my loaf bread pans for containers even though I told them we baked. They tossed parts that went to my dishwasher (like the knife shelf and parts to hold the utensils) along with many other practical things.
They also laughed at my feminine products, opening all the boxes and placing them on lower shelves for my children to access. I thought the “organizers” would say something to me before opening. The unusual number of boxes were only there until I could donate them to the “safe house” of women who sheltered us from my ex.
They made the house worse and social services required me to pay a nominal amount for the service, so that they would get off my back for seeking service in the first place.
I shan’t err again!
(Is “shan’t” a word? Seems like i’ve heard it somewhere before) 🔀
disconcerting just making sure the kids are ok. I know there’s no way I could have made it through this past year with our 2 year old without the help of my husband and my mom n dad. How old are your kids? I’m 40 years old and got a late start as well.
I’m still having trouble understanding what you need? Someone to organize your bills? Organize the house?
For financial organization, is there a local college that might be able to supply an accounting student to help you out?
As for organizing the house, it sounds like your kids are probably old enough to help—I’d give them some weekend projects. It will be good for them!
I hope you find what you need.
BTW-My screen name is actually pretty geeky. 3.14 in math is pi..so it’s really “cutey pie.”
Thank you CloverPrincess, Today the kids required pretty much my entire day so I will try to give them a call Friday.
I am currently on social security and long-term disability which requires organization of bills for keeping the books balanced. I can’t organize the mess left by my ex, my bills or go to work at this time due to fatigue, pain and life.
If my life can be put in order, I hope to do something part-time. I love working, but my symptoms are not completely under control yet.
Disconcerting, it's Fancy1959. First and foremost I want you to understand that you should feel NO SHAME in what you're dealing with. Instead of Shame you should feel like true champion holding yourself and your family together as well as you've done with what limited resources and assistance you have. I wish I lived closer where I can reach out and give you a big hug and be there to help do what little I could help to do. Call the national MS Society at 1 800 fight MS and they will give you to a caseworker who can then direct you to what resources are in your area. There is also resources from the MSAA but I am ashamed to say I don't remember the number. So see you are not alone in your symptoms. I am fortunate to have this chat room for support and it can also be great support for you. I also have a spouse and three grown sons and one beautiful grown daughter who are there whenever I need them. I can't imagine trying to fight this disease at the stage I am in with young children. You are doing a marvelous job trying to keep it all together. Please keep in touch whenever you need to speak to someone or lean on someone or cry on someone's shoulder we are right here to bounce ideas off of and to listen to all you have to say. Until we speak again take care of yourself and your family. Thinking of you and wishing you well. Fancy.
Strong shoulders and perseverance are traits I have found in great MSrs I’ve come across.
BIG *VIRTUAL* HUG!! ☃️ (having a lit’l fun with you poor thing in the snow).
The hug was for real though. 💝
I appreciate the lift through encouraging words. I look forward to the phone calls ☎️ I will be making tomorrow. (The big clonker of a phone is so much more appealing than an emoticon “smart” phone)
Remember when we laughed at Maxwell Smart talking into his shoe?!
Thank you for sharing your journey story on our community platform here, disconcerting . I'm sure you'll continue to receive suggestions and support like the comments above.
And thank you for the kind words on how MSAA has helped you in the past - words of encouragement like that are always appreciated by everyone here at our national HQ! If you ever want to contact us again to see about new resources or assistance you can call our Helpline and speak to our Client Services Specialists at (800) 532-7667 (extension 154 to get them directly) - Fancy1959 ok if you didn't remember the # in your previous reply!
John, since my last fall on last Wednesday I have noticed I'm not recovering near as quick as I used to. I'm also having more holes in the old memory such as this the blank space where the MSAA client service number should have been stored was somehow mischievously empty! ( Concussion number 9 is definitely starting to show me that I cant keep taking them in stride. I really need to be more careful and protect myself or suffer the consequences.)
Disconcerting - Do you have a church family? You could talk to your Pastor or Bishop and see if there is someone in your church who would be willing to help out with organizing your bills and keeping you on track. I used to do this for older folks and disabled folks in my church. I would also, if they wanted me to, balance their checkbooks and write their checks and then drop them into the mail for them so that they did not get forgotten. Also, if you have a church family there may be others who would be willing to help with your children for a short term. I also did this in my church. I was asked to move in with a single mom and help her organize her home and take care of the children. 2 of the women I helped also needed to be shown how to take care of children because they didn't have a clue. I usually stayed with them for 3 or 4 months and then would move on to another family. I did this while going to school and received room and board plus $200/mo. That just showed my age!
If you don't have a church family I recommend trying to find one that works for you. I church family can provide much needed emotional, spiritual, and many times physical support while at the same time making you some wonderful friends.
I do have a church home that i love dearly, but the congregation is rather small and composed of older people (a bit pass the travel age except on Sunday) and then a few young families who both work or are caring for newborns (3 in the past 6 mos & 1 on the way).
My church has helped provide food (during really tight times), a week of summer camp last summer and they have helped three of the children all attend their school at some for a few of their years. Currently, one is enrolled there.
Of course they have been there in areas they could and I am grateful to them and their loving support.
I don’t reside very close to the location. I did have a person I wanted to live with us, but our home isn’t even large enough for me to sleep on the same floor as the children.
We are outgrowing the space, but I love the location. All my neighbors look out for my children (that is a *huge* help because I also have a special needs daughter ), they help with outages during storms, help if I have trouble with outdoor stuff (trees, leaves, our well pump and auto) and those types of things.
My family has for the most part all passed away and my mom is too sick to help. I don’t meet many people because I only have limited energy. And the ones I do meet typically have special need children of their own.
I attempt to keep myself in good health and I just got one of my kids needed help with school (we thought he was dyslexic, but i know he has learning challenges).
Things are consistently overwhelming during this season of life and the house layout compounds the stress. I am hoping to have modifications to the house because i can’t afford another house where we are. I don’t want the stress of locating new specialists, schools and pharmacies, etc. for everyone.
I am disabled on social security, have two children with learning challenges: one having a brain that did not migrate in utero (nodular heteratopia) with hidden seizures (epilepsy) and the other just starting an IEP (learning contract in public school). All the reason, I want to stay consistent for their schooling.
I have fought the good fight and have sought as many resources as I could to make a decent life for my entire family.
I could rant on, as you see. Ugh.
The divorce requires me to have help from people that I don’t typically talk with like property lawyers before straightening up.
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