I'm reaching out to my MSAA family to help me explore my options. I've been living in my deceased parents home for fifteen years now. I am only 56, but was dx with MS at age 26. My biggest problems are fatigue, cognition, balance and bladder issues. I live alone with my cat. I have no family in the area. I "still look so good" but am worried about what options may be available for me as I age?
I find that cognitively I am at a loss more often lately. I can't afford a senior care community, unfortunately. What options can you suggest for me? I'm not sure where to turn or what options may be available for me?
Thanks for your input!
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DM0329
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Hello DM0329 ,I am 50 and I also live alone. We are in different states so there are different options for different regions. I'm on SDDI. Medicare and The "extra help" which in my state, Oklahomabis medicaid as my secondary. I live in my travel trailer for the past 7 years. (Longest camping trip ever) the smaller space allows me to get around without the help with my forearm crutches. Since I qualify for the extra help I also qualify for home care. I had to go through approval processes and still do every 6 months. I have a caregiver they now call PSA. I had a few and alot of them were not great but finally my current is. She is young but that's a plus cause she has the energy to do things for me. I am alloted her time 4 hours a week soon to be increased to 5. It will be 2 hours for laundry, 2 hours for cleaning and 1 hour for shopping and errands. So I'm not sure if it's the same there but it's very helpful to me.
Thanks for your prompt reply Allen. I also get Extra Help. I suppose I start with my Medicare Supplement to see what options are available to me? I suppose I would need a script or something in writing from my neurologist, right?
I'm so confused as to where to turn as I continue to age my MS slowly continues to progress, even just changing my sheets can be such a strain for me. WTF? Really? Denial just ain't just a river in Egypt. LOL
Should I contact my Medicare Supplement first to see what they suggest for my home care? I get so confused about this stuff.
Oklahoma has DHS cover my supplemental stuff. 1st I had to get dhs approval they talked with my physicians. Then they passed me along to ANOTHER agency called ASCOG (Association 'of' South Central Oklahoma Government) that handle all my applications for care. My ASCOG care manager then sends paperwork through for my benefits. I got new glasses thise year... I get some food, it's pretty lousy and I would starve if I relyed solely on that. I get a care aid through another agency that handles the hone care. It's a costly system but not to me anymore. So the procedures are going to vary from state to state but that's how it works here... all the money spent on all the different agencies... I could live a comfortable life if it were handled by one or two... good grief.. just the way it is here. And yes Denials currents are strong here as well... 😄
So, Pennsylvania is a "tricky" state. At a quick glance, I would not be eligible as I'm only 56, and age 60 seems to be the threshold. Unfortunately, my biggest problems are "invisible" but I may be wrong, but except for Extra Help for my DMT, I usually am "too rich" to get any other assistance (only my Medicare premium is paid for by the state, etc.). Again, I will try to find out more but I just don't know anymore. Sheesh!
Might be helpful to talk with someone from your local Medicare office. They may know or can point you in the direction of someone who knows state regs for it all. I know I didn't think I was eligible for alot because my young age and talking to the wrong folks sent me in alot of circles because they normally only deal with seniors on most the Medicare and extra help issues. Looking at someone can not determine therein eligibility for most of my approvals were due anxiety disorders (even my ssdi) not my MS symptoms. I even get physician house calls now and if it were not for my anxiety I would not have met their offices qualifications due to high demand. So alot of people judge what they can see but there are those who do not. Keep your head up, I spend far to much time looking down and it's hard to break free of it. I left PA when I was young. I don't much remember it due to a bad accident have very little memory before 2000.
Again, thanks for your replies. From my early research, my Medicare threshold for home care is age 70, and in Pennsylvania for Disabled in home care the threshold is age 60 (I am age 56). For instance, I couldn't even qualify for a disabled homeowner grant until age 60 so???
Friday will be full of more telephone calls for me! Thanks for your input and keeping me smiling! Misery loves company!
Ok that sucks... I was trying to help cause I went $$$$ broke $$$$ trying to sift through the mess... hoped maybe I could help someone else avoid my disaster. 2000sq ft house on 4acres in town to a 380sq foot keystone. So.... my heart really goes out to ya cause I know the stress of it all to well. Thats the saying but I'm so empathic the misery of others breaks my heart and splits my soul right down the middle. However, keeping you smiling... well that makes it better
That just stinks don't it, when you're too rich to get any assistance... I've got only disability & Medicare advantage. I could use the extra help too. I was dx at age 27 & worked until I was 37. I took myself out of being an RN ( I was shaking during med pass) & wasn't quick enough on my critical 🤔 thinking. Thank God I noticed this first. Having MS really SUCKS.🙏❤Lisa 💕
That just stinks don't it, when you're too rich to get any assistance... I've got only disability & Medicare advantage. I could use the extra help too. I was dx at age 27 & worked until I was 37. I took myself out of being an RN ( I was shaking during med pass) & wasn't quick enough on my critical 🤔 thinking. Thank God I noticed this first. Having MS really SUCKS.🙏❤Lisa 💕
I’ve been to do the same . I just got a 5 th wheel. Don’t know crap about it in the middle of Colorado. My brother came and hoped we got it winter proof . Lol Ya in in for a long hall. Can’t afford rent and space rent is 1000$ Cripes!! I get 1025 a month . Yesterday I told the x to keep the stuff in storage. Can’t afford / or have space. Plus it stops the threats . Trying to get government phone . Told him to shut my phone off and drop my vehicle insurance! the threats all the time ! I need to find a place to live . Has to have heat or warm cause I can alway turn the air on . Any advice about camper living . Newbie here . Looking in to a housing voucher program maybe it will help me get in to an rv hook up area .
My advice on full-time travel trailer living, for winter skirt your trailer. Tarp like skirts help keep the wind from sucking the heat from your floors. Wat, mutiple layer socks are a must even with a skirt. Tarp like skirts can be pricy... had mine done when I bought mine (still had some money) runs a couple thousand or so probably more now. If I had it to do over again ( in my 7th year now) I would have went with foam insulation boards (like they put on houses prior the siding) and wood stakes to hod them in place. It's a much more cost effective way to keep the wind from sucking the heat from already cold floors. It can be a challenge to keep the pipes from freezing during long cold periods. Also helps reduce the amount of propane needed for your furnace. Summers can get warm too so good ac is also necessary. They can be really expensive to replace so myself and alot of other full timers around me put in window units at a 1/4 of the cost. Don't forget a heated hose for the winter months too. I live in a Mobil village just on the edge of town and our rental spots are 360.00 a month so you might look around at different parks for better rates.
Consider a ring door bell camera. My daughter has linked to it and can see me open the door to let the dog out. This would work for a faraway family member to see you are doing okay. Plus if someone rings it I can greet them with a message using my phone app. I too am worried since I live alone. For now I just keep things a certain way when moving around so I do not trip.
The ring saved my life . Last year newbie here thought I go do some gardening on a shot day . Barely got out there and had a seizure. Found my self on my knees . Didn’t know where I was at . I got up and worked my way to the front door and was so hot had another seizure. Sweating like a water fall . I could here hello hello I’m calling an ambulance . you just stay there . Thank you ring
Check with your local senior citizens center and see what options they might be able to suggest for you. Talk to your health professionals and see if they have any ideas or suggestions. They might even know of other seniors in your same position that can possibly share living expenses with you. Two people can keep tabs on each other and make sure each other is OK. You and the roommate could also make sure that you remind each other of important things and keep each other generally on track. That's just a couple of quick thoughts I had. If I think of more I'll let you know. Fancy59.
Try to document everything that is said when you are on these phone conversation.. the telephone numbers that you are using and who exactly you’re speaking with. Sometimes I even document the time depending on the day I really struggle with cognitive issues about two weeks ago. I was recovering from unfortunately an untreated, UTI, that I have had her well over a month without realizing it, and it was affecting my cognitive issues in a big way, unfortunately I was trying to talk to Social Security about my upcoming premiums. I was going to have to pay for Medicare and luckily my husband happen to be near me and was able to take over the conversation.. we have taken up all the rugs in the front part of the house and many of the rugs in the bathrooms to avoid tripping hazards. I don’t know if you are eligible to get some physical therapy as well to make sure they can work on your balance. Strength and endurance. That can keep you safe or in your home longer… I look forward to hearing about your journey.
Thanks so much for your suggestions. I agree, NOW is the time to build up my strength and work on my balance issues. I intend to get out and walk at least three times a week to build up my balance and work my brain too.
Years ago, I used to walk backwards too. It kind of was freaky to do that, but my brother who is a United States Federal Marshall, suggested trying it to me. His job depends on his physical fitness.
Every year he is re-evaluated by a government doctor for his level of fitness, his eyesight, etc. They found out that he has a weird type of color blindness in his eyesight, but it's not affecting his job.
If he was given a MS diagnosis he would have to "retire on disability immediately." Even a co-worker who had a diabetes diagnosis was put on disability by the federal government, but he actually was able to sue and get his job back.
Sorry, cognitive issues and my meandering. I'm very elliptical. HAHA Surprisingly, both fatigue and cognitive dysfunction are the top two reasons that folks leave the workforce.
My cognitive dysfunction was very well documented when I applied for SSDI at age 45. Given my educational background (M.Ed. and BS and I was in the "gifted" college prep high school program) my neuro-psych evaluation provided the qualitative description of how my many lesions and black holes on my MRI impact my brain's functioning.
It was something, I was actually brought to tears during the two-hour assessment. I could easily see/feel how badly I was performing. The doctor told me how older folks with Alzheimer's get very agitated by the test. For me, I was simply distraught, but it was very helpful for my getting SSDI on the first try.
But again, I worked from age 26 when diagnosed until age 45. I didn't start Avonex until age 29 too. Anyway, thanks for your input. I'll keep everyone posted.
Wow!! You are a great historian! Are you currently still doing Avonex? I stayed with it for 19 years.. I didn’t start declining physically ( seemingly )until the end of Jan 2020 when I suffered a devastating fall and jacked my ankle for months.. after I came out of the” boot” I returned to the hospital in all the PPE.. Covid abounding - they were not my best years at the hospital.. the more I would overheat in all of the isolation stuff the less my brain was able to adapt to the heightened stress levels and complex medical procedures and REALLY sick patients.. I hung in there until I could barely walk to my car and get in after a shift (my hubby had dropped me off and picked me up for years)- he was out on jury duty for a month.. I had to turn in my notice of retirement the next week after 34 years with the same group.. 39 in healthcare. I am so grateful I didn’t face plant my Last month .. life is much better now that there is more time to put in the work at the gym and eat better..
Oh my gosh!! The hair and nails have been kinda crazy but my pharmacist recommended my taking biotin supplements and it has taken a few months to see results with my nails but I’m finally not walking around with crumbly nails.. luckily for me, my hair loss settle down probably after a good year of taking the Aubagio … I really love it because the side effects of the Avonex kicked my butt every week! For the entire time I took the Avonex.. they kept saying that. Oh eventually, you’re not even gonna have the flu like symptoms. But I did. We are actually traveling right now and Glamping. I walked a whole lot more yesterday than I have in a long time. We are really having a good time. The leaves are lovely right now. I am so glad that you figured out how to feel pretty with your hair… Normally I like my hair especially when I remember to bring my hairbrush… Lol now it looks a bit like a Brillo pad.
Hi there, I am sorry you are struggling. It is wise to think ahead! Here in FL there are some lifecare assisted living communities, meaning you live there even after your funds are depleted and continue to receive care regardless of your ability to pay. Is there anything similar in PA? You might also want to look for a senior care manager. I attended a seminar with my mom with the author of “The Fragile Years” and the book has a wealth of information for navigating care. Also, most senior living facilities accept residents age 50+, so you do not have to be 65 to get in. Of course, you would probably have to sell your home if that is an option for you. I am a caregiver for my elderly mom who moved from assisted to independent living and is now on hospice, as well as my daughter with MS so I try to learn as much about ongoing care as possible. All the very best to you!
Thanks so much for your input! I am living in my family home, and it's a 3 BR Split Level. The basement floods sometimes as with climate change we seem to be having wetter and warmer winters as the earth rarely freezes during the winters.
So, I'd love to sell the house. But, it's my only asset really. I cashed in my 401k to pay my $650/month COBRA for 24 months on the wait for Medicare when I quit work and applied for SSDI. I got it in six months, but the two-year wait depleted all my assets, except the house.
I'm actually thinking of "downsizing" and selling it to pay for my Senior Living Community, which is quite expensive. But, I will sell my family house, all the furnishings and my car too.
The Senior Living Community is a Continual Care Community too. They have three shuttles to drive patients to and from appointments and/or shopping.
But, they do have lots of things "on campus" with lots of activities, socialization events, excercise programs, coffee areas and a cafeteria too.
Although you do get your own "room" or "apartment." Expensive but so worth it. Socialization and getting out in Nature regularly have been proven to be very important to aging people.
Statistically, MS shortens your life span 7 years on average. You cannot move into the community until age 60. I am currently age 56. I hope to be able to stay here until age 66? But the house floods when it rains in the basement etc. I pay for lawn maintenance too.
So, if I sell the house and move into the Community at age 66 in ten years I would be 76. The current life expectancy for a woman in the United States is age 77. So, 77 minus 7 is 70.
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Post 525 Somebody is going to get upset 27 Sep 2019 2
DMTs- what are you on and how are you doing on it? 
