@repete
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Pete Barron replied to the topic International Wheelchair Day 2021 in the forum Muscular Dystrophy Awareness 1 day, 8 hours ago
This is a topic I love and I’ve already shared a lot about the freedom my wheels give me. So many people get stuck in the sad end of being “wheelchair bound”, but it’s not like that at all! I deferred the decision to get a power chair for years for all the typical reasons, but when I finally fell into one and found out how much freedom and less…[Read more]
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Pete Barron replied to the topic Invisible VS Visible Disabilities in the forum Adults With Muscular Dystrophy 5 days, 10 hours ago
I agree, “everyone’s difficulties are valid!” We all get judged at times by people who don’t think we are disabled enough to require accommodation. Sometimes I’ve even been judged “not disabled enough” by other disabled people. We all have to fight our own battles within ourselves about accepting our own disabilities.
Before I was in a regular…[Read more]
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Pete Barron replied to the topic Signs or Magnets on Accesible Vehicle in the forum Muscular Dystrophy Tips, Tricks and Advice 3 weeks, 5 days ago
I drive a rear entry Honda van. I paid $25,000 for it 3 years ago when it was 10 years old. I put stickers and signs on the ramp that I bought at a safety equipment store. In parking lots the rear entry is easy and I can park anywhere. When I park on the street I try to find a place at the back of a line of cars so I can’t be blocked. I have an…[Read more]
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Pete Barron replied to the topic Inauguration 2021 in the forum Coronavirus (COVID-19) and MD 1 month, 1 week ago
I didn’t watch the show, but the change in attitudes and health care can only get better with the new administration. We have to wait and see what gets accomplished.
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Pete Barron replied to the topic Avoiding Accidents with Your Mobility Device in the forum Mobility Aids and Medical Equipment 1 month, 3 weeks ago
As much as I have lived these past 10-15 years in a mobility device, I still have accidents. It seems impossible to avoid damaging a doorway or hall. We spent a lot of money fixing up our house from the last mobility device resident, and it pains me to see myself damage it again. It hurts even worse when it is somebody else’s house!
Yet I am…[Read more]
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Pete Barron replied to the topic What Did You Learn in 2020 in the forum Adults With Muscular Dystrophy 1 month, 3 weeks ago
I have been reminded in this crazy year the value of simple pleasures.
To see somebody up close in the flesh.
To give and get a hug from a close friend.
To see a smile on a stranger’s face when you say something nice.
To visit a friend and not have to talk to share meaning.
These are all things that I have missed this year and I hope I will…[Read more]
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Pete Barron replied to the topic Having Assistance with Pleasure from a Sex Worker in the forum Adults With Muscular Dystrophy 2 months, 1 week ago
I agree that there should be no shame, for anybody disabled or not. The whole “oldest profession” should be legalized and cleaned up. This would put a handle on disease prevention and sex trafficking. It’s another one of those things that many do, but few admit!
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Pete Barron replied to the topic Surgery in the time of COVID-19 in the forum Coronavirus (COVID-19) and MD 2 months, 2 weeks ago
Dani, sorry to hear about your surgery. Although we should be glad because the surgery is supposed to help? Anyway, we all know digestive issues are the pits and what most folks who have them say is the worst part of their condition, myself included. But, as Leah said, we know you’ll get through this and return to your “normal” life! Stay positive…[Read more]
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Pete Barron posted an update 2 months, 2 weeks ago
Thanks Leah, we all get good advice from wherever we choose! It’s important to note that everybody is only temporarily able bodied! If you live long enough you will struggle with mobility as we all do. On mobility equipment, I gave up on Numotion (we call it “nomotion”) after horrible service on my first chair. My present chair came from National…[Read more]
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Pete Barron posted an update 2 months, 3 weeks ago
I am responding to Hawkeen’s piece on falling. One of the main killers of us is “falling in the wrong place”. I mean like off a curb, in front of a bus, at the top of the stairs etc. A friend of mine once had a karate teacher who told him that the best way to avoid a punch is to”no be there”! The same goes for falling. If you’re sitting down you…[Read more]
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Pete Barron posted an update 2 months, 4 weeks ago
I just had to say that once again Hawkeen is right on the money! He regularly hits the nail right on the head and does again in his positive vs. negative column, (especially with “toxic positivsm”!
I also wanted to reply to Leah’s post about certain foods making your muscle disease worse. I don’t have the fatty liver problem, (that one sounds…[Read more] -
Pete Barron replied to the topic Starbucks’ Switch to Sippy Cup Lids in the forum Adults With Muscular Dystrophy 4 months, 1 week ago
I have rarely been a “Barstuck’s” customer as I much prefer to give my money to any small local competitor. I don’t understand the straw issue. I use a metal straw repeatedly. They sell them at “Wallyworld” and they are cheap and easy to rinse out and easy to carry. They come in a variety of thickness and bends.
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Pete Barron replied to the topic 30 Days of MD: Tali in the forum Adults With Muscular Dystrophy 5 months, 1 week ago
I think we all worked against being “wheelchair bound” until we changed our attitude from the “ableist”. I too feel empowered by my wheels, not restricted. Walking isn’t so important, being there is!
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Pete Barron replied to the topic Overcoming the “Burden” Mentality in the forum Adults With Muscular Dystrophy 5 months, 1 week ago
Nobody likes to be a burden, but I remember in my past life of being a temporarily able bodied person, how easy it was to hold the door for someone or help them find where they were going. I remember how good it felt to take a little time to help someone out. I don’t want my hangup about being a “burden” to keep anybody from feeling that!
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Pete Barron replied to the topic Hospitals and Their Protocols to Protect Their Patients Amidst the Coronavirus Pandemic in the forum Coronavirus (COVID-19) and MD 6 months, 2 weeks ago
I had to go to the emergency room at the end of March for some severe gastric problems. They wouldn’t let my service dog or my wife even through the door. The procedure took several hours and I was unable to call anyone to let them know until they discharged me. I understand this was early in the pandemic, but communication was totally absent,…[Read more]
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Pete Barron replied to the topic Anxiety in the time of COVID 19 in the forum Mental Health and Positivity 6 months, 3 weeks ago
I have often heard that with anxiety as well as pain you were supposed to get “into” it to feel it fully to try to understand it. While that may be useful to comprehend things on a deeper level, it has never worked well for me. I just try to keep busy and avoid concentrating on the pain or anxiety! When I’m busy, I forget my pain and worries and…[Read more]
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Pete Barron replied to the topic Design Mobility Devices in the forum Mobility Aids and Medical Equipment 6 months, 4 weeks ago
I would want something like yours’. They actually make a chair with tracks and wheels that can even go up and down stairs. Unfortunately they are European and not medicare approved so you have to buy a ridiculously overpriced chair with cash and there’s nobody around who could repair it or even get parts. Also these chairs compromise speed and…[Read more]
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Pete Barron replied to the topic Troubles Breathing While Eating in the forum Adults With Muscular Dystrophy 7 months ago
Choking is a major problem with my disease (Myotonic type 2). My sister who also had this, died choking on a spoonful of peanut butter. So, I am always trying to slow down my eating and coat everything with enough liquid to lubricate it’s passage. I still choke frequently, sometimes without eating. So far it has never reached the point to where I…[Read more]
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Pete Barron replied to the topic The Problematic System of Wheelchair Service Companies in the forum Mobility Aids and Medical Equipment 7 months ago
My first insurance covered chair was with Numotion. Service was awful and customer care disappeared as soon as I signed up to buy it. Many of my disabled friends had the same experience, so much so that we got to calling them “Nomotion”! My newest chair is through National Seating. Although far from problem free, they really make an effort to cut…[Read more]
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Pete Barron replied to the topic Driving with Orthotics or Braces? in the forum Diagnosis Information and General Questions 7 months ago
Years ago I was being fitted with orthotics for my toe or foot drop. I realized once I got the brace on that I couldn’t drive with it because it wouldn’t allow me to extend my toes and I would have to lift my whole foot up to work the accelerator. Since then I realized that I would be much more mobile and safer if I gave up walking all together…[Read more]
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