I have a lot of difficulty as well wearing most jackets in the winter, but what is more frustrating is having someone put the jacket on me or take it back off again when come indoors. The act of getting a jacket on and off usually throws my seating position off and as it is typically done by someone unused to dressing me, it often results…

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Not the best coping mechanism …but i make a very strong cocktail that is basically just rum and sip it throughout the day. Someone says something annoying, a big sip. Basically treat it like a drinking game. Hey…it works lol

Having SMA for me is like having the crappiest full time job in which you don’t get paid , people don’t respect you, are in constant fear of life threatening injury, work 24-7…and you can’t quit. Your co-workers are not always reliable and the machinery needed to function is constantly out of date, broken or entirely absent. Oh, and…

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Both Acrylic and oil paintings of mine shown. Can find links to all my stuff at…

Check with your state’s local Disability services. It is possible that you might qualify for Medicare or the equivalent of REM (Rare Expensive Medical conditions …am not sure still exist under that name ). Any disability program , Insurance , etc., will try to deny you the first time apply. They do this knowing full well many people will…

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My hobbies, especially art, has in the past always helped quite a bit. When stress levels get too high, i will sometimes try meditation with a meditative sound playing trying to focus just on the sounds. Honestly sometimes this doesn’t help either and I wish there was more affordable mental health available to us.

My shelf broke lol

I wish that the gains were more noticeable. If the medication is just keeping things from getting worse, that in itself is beneficial , but it would be nice if experienced more than just the side effects to know it’s doing something.

Art is my first love and is the root and inspiration for all the others. In order to learn the skill to draw what is in one’s own mind, it requires focusing the minds creativity.

So…hobbies is the one thing never had a problem with as i seem to have way too many. Here is my current run down.

Art * painting oils, watercolors , acrylics, drawing , sculpture , computer graphics

Crafts- Everything from stuffed bunnies and papercrafts to baby grandmother(?) clocks

Robotics and electronics -Designing robotic…

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Thanks. I actually did try an anti-depressant prescribed by doctor and even though it was supposed to be mild, I had terrible side effects. I never really liked the idea of anti-depressants anyway as I always kindof felt like if things really are crappy and your depressed, it’s an issue with fixing the crappy part, not the depression part…

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Been dating a wonderful woman for a while now. Dating honestly is so incredibly complicated, to be honest I tend to put them off. While i absolutely love having a girlfriend , someone whom i can go out with, my anxiety builds before every date to the point of near paralysis. Every date feels like coordinating the storming of Normandy…

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So…I would rather take the initiative and ask someone for help then be someone who looks to be struggling so much that some stranger feels obligated to ask if i need help. I learned long ago asking for help and directing the help you need often appears stronger than when someone has to ask if you need assistance . Asking is direct and…

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Absolutely. Anytime go into an over-packed crowded restaurant and have to ask patrons to stand up so can scoot wheelchair by. Every-time i try to enter a small shop and find myself stuck in an aisle and have to apologize as i carefully try to back out without running someone over or knocking over a display. Even in my own home when for…

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Yes…I have been looking into an exoskeleton robotic arm braces for years. Until recently, insurance would not cover any of them , so in frustration, I bought myself a 3D printer, am teaching myself some basic electronics and already know how to program …so am trying to build one myself. Sadly, I was expecting a lot more enthusiastic…

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I went with the Invacare AVIVA STORM RX Power after years of using Quantum rear wheel drive wheelchair. I hate mid-wheel and front wheel drive chairs . My Quantum was nice but it was big and a little glitchy. I had lots of issues with the joystick not behaving properly and for it’s size, it had lousy traction . My new chair is smaller…

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For Black Friday , after talking with my father about how I was thinking about upgrading my 3D printer, I decided it was a worthwhile investment. I was planning to put it off for a few years, but with concerns about Trump’s plans to raise tariffs, I figured i had better not wait as the one everyone recommends comes out of China. I had enough…

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Receive SSDI (Disability Income) as I was employed for many years as a computer programmer which has me right at the razors edge of $2,000 in income which is counted as an asset for my states attendant waiver program. Any additional earnings would push me over that threshold. I do use an ABILITY account for whatever remains at the end of…

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Something like a charger is not particularly expensive …at least in parts. The red-tape involved in getting something like a brand new wheelchair almost necessitates insurance paying more than they ought to do to their own rules. Case in point, my prior chair’s joystick went dead after putting in paperwork for a new chair. Instead of…

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Am in the same boat. I live with my 85 year old father who has mobility issues himself and still rely on him in emergencies. The attendant I rely upon the most is in his 80s as well…just more physically fit. He comes mornings and evenings, currently 7 days a week as my alternate is out from having a baby. I have literally spent…

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Acrylic paint is my favorite. It is versatile, easy to use, and you can make incredible works with it. I do like copic markers, but opening the lids is annoying. I would like to work more with oils as they are the most challenging. Watercolors are great for traveling, easy to pack and clean up after. I use to love computer graphics , but…

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So…my niece, when she was young was probably the most active energetic kid on the planet. To give you some idea …she is an acrobat and currently got accepted to a school to train for cirque du soleil. She literally was upside -down walking on her hands more than she sat. No human alive could keep up with her…and, much of the time, it…

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It is only my opinion, and I certainly maybe misjudging things as it is more that it ‘feels’ like we are going backwards rather than being able to provide a quantitative evidence. I felt like in the past, when I encountered a situation in which accessibility was an issue, people were more willing to rally around and make things work and try…

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I hate to advise anything medical without telling someone to consult a doctor. I can only say what I personally do…and it may or may not be safe for you. I do take ginseng for energy. Does it work? I don’t know. A big help on sunny days is simply taking a ride outdoors.

As an artist, I frequently have difficulty opening marker caps. Am sure I can build a better solution, but typically I take a pair of sharp scissors, grip with the blades right at the end of the cap and use the scissors leverage to pop off the cap. The good news…this usually works. The bad news…the cap typically shoots across the room…

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I have felt like we, the disabled community, has been going backwards at least since 1999. To be fair, the disabled community made huge leaps and bounds through the 80s and 90s…but since then, I feel like the whole world has gone backwards. In the 90s, the mall was a great place where someone with a disability could go, feel free to roam,…

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The bathroom is by far the biggest obstacle I think I face due to my SMA and it consumes an inordinate amount of time, energy and resources just to ensure that I can go to the bathroom. Mornings, I have no choice…I require an attendant to transfer me to a rolling toilet-shower chair. For ages we struggled with an external catheter setup…

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I feel like that almost every day of the week anymore. Day starts with me waking up with a terrifying thought …what if attendant can’t make it in this morning? What if they get sick, car accident , issues with family members ? What do I do? Attendant arrives…check schedules. Known days be out, who can fill in? How long will they need…

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So, the one caregiver I have had quite a long time, and he had to pickup caring for me 7 days a week, morning and night when i lost a caregiver who worked morning Monday through Friday. He was getting very worn out. Agency sent out a total of about six people over three months if not more. They all said I lived too far away to make it…

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Finding caregivers has become an absolute nightmare. It can take months to find anyone, and half the time the people who show up decide it is too much work…too far…pay too low and never return or tell you that they quit. I am lucky i finally found two good reliable attendants…but am constantly afraid one or the other will get sick or…

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Sorry for taking so long to reply…i just noticed that i had messages waiting . I go through an agency …one of the few in my area. The good thing is they will pretty much hire anyone i send them , but they have not been great locating people on their own. i did manage to find a prior attendant who has been willing to come in thankfully ,…

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I avoid coats as much as possible . Typically in really cold weather I will wear a sweatshirt with a thermal undershirt and a sleeveless vest. I will also carry one of those chemical bag hand warmers…the kind you shake and they heat up. I tried sewing a usb heating pad into my seat cushion cover to work via a usb phone charger…but am…

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Things have gotten exponentially worse since the pandemic. I hate to stress You out more , but I just went through a two year nightmare to find an attendant. I am absolutely terrified of either of my attendants getting ill or calling out as one has been having health issues and the other has kids. I nearly had to file a lawsuit against…

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As someone who once held a good paying job and formerly started to make a nice nest egg…if you are still getting care from aging family members and have not looked into the rules and regulations for receiving attendant care…please do so…now. Odds are, unless you are a millionaire, you will be unable to pay from savings for attendant… Read more

First off…I really think everyone should completely ignore the concept of life expectancy for someone with SMA. I am already well beyond what age any doctor would have told me about life expectancy. In my opinion, if You can avoid too many serious flu, colds and Corona and look after normal health needs, You are just as likely to live to… Read more

Two of the biggest obstacles everyone I know in the SMA community deal with is always 1) attendant care and 2)transportation. I am fortunate my dad is still capable of driving, but I wonder for how much longer . Public transportation services won’t cross county lines, are incredibly unreliable and often give pick-up – drop off times plus… Read more

So…nothing gets me angrier then the way the current system handles employment of people with disabilities. Ironically , my very first job out of college was working as an administrative assistant for Maryland’s departments of employment of people with disabilities. That terrible experience has long shaded my opinions and sadly my… Read more

Of course…I try to get my crankiness out when i am not around other people by yelling out curse words to myself in the basement.  I am generally in very good control of my temper otherwise….but it is a bit like a high pressure tank with no safety valve.  It takes a whole lot to make me blow…but you want to be miles away in a fall out… Read more

I use both Alexa and Alexa motion sensors with smart lights and smart outlets.  I have been switching to this from x10 which i used for years. I love Alexa for automation.  The great thing with Alexa is you can activate by voice and can use Alexa as a phone or intercom as well.  There are tons of devices that use Alexa and they are reasonably… Read more

My attendant care situation since August

My apologies for its length and lack of paragraphes but it is assembled from a series of post about my own ongoing attendant nightmare.

 

I am contacting You as I have run out of other options and I am at a complete loss as to what to do concerning my attendant care situation. I have a form of… Read more