Pete Barron replied to the topic Accused of faking/ milking disability in the forum Mental Health and Positivity 6 months ago
Once when I stood up in a public space to reach something, some guy said “Nobody asked me, but it seems to me, you don’t need that fancy chair.” I have often felt that type of a remark from bi-standers. I said, “That’s why nobody asked you!” Let them walk a mile (or 10 steps) in my shoes and I bet they would want some way to get around and…[Read more]
Pete Barron replied to the topic Taking Medications for MD and Other Conditions in the forum Adults With Muscular Dystrophy 6 months ago
I don’t know about the body not meant to take medications. I take polyethylene glycol (Miralax) daily ever since my large intestine stopped functioning years ago due to my muscular dystrophy. This medication keeps me from needing surgery to connect my intestine to a bag, which is obviously much more invasive. We all often take pain relievers to…[Read more]
Pete Barron replied to the topic To Save the Wheelchair or Not to Save the Wheelchair; The Story of a House Fire in the forum Adults With Muscular Dystrophy 6 months, 3 weeks ago
OH, ouch! You didn’t say why anybody would set your house on fire, but that is a major crime and should be prosecuted! I’m glad you’re okay and I’m with you (to Hell with the chair and let’s get out of here.) Things are replaceable, our health is not!
Pete Barron replied to the topic Mobility Device Stops Working in Public in the forum Mobility Aids and Medical Equipment 6 months, 3 weeks ago
Too many times to count! (Of my power chair dying in public.)
I use my equipment hard, no apologies. I am in my chair from when I wake up until I go to sleep. I am active so I am often on the bus or in my van or rolling around downtown, and something is often breaking. Unfortunately these necessities are not reliable, even though we are forced to…[Read more]
Pete Barron replied to the topic Medical Gaslighting in the forum Diagnosis Information and General Questions 7 months, 3 weeks ago
Unfortunately doctors are just people, and people come in all sizes, shapes, and flavors! We need to ignore the idiots, be they docs or whatever. Find another doc who listens and is willing to prove himself wrong!
Pete Barron replied to the topic How can a neuromuscular disease impact mental health? in the forum Muscular Dystrophy Awareness 9 months, 1 week ago
I dislike drawing an imaginary line between “mental” and “physical” health. Our heads are part of our bodies, anything that effects your body effects your brain and visa-versa! When we are sad our bodies hurt and when our bodies hurt we are often sad. Especially with a “neuromuscular” disease, there is no line.
Pete Barron replied to the topic Actor and Comedian, Gilbert Gottfried’s Passing in the forum Adults With Muscular Dystrophy 11 months, 1 week ago
As far as I know Myotonic Dystrophy type 2 (which I also have) is always adult onset. I do however recognize the cardiac defect, which my father who unknowingly had DM2. My father received a demand pacemaker which kept him alive another 25 years. I assume this was sadly not available to Gottfried. I have been monitored, but as yet do not have this defect.
Pete Barron replied to the topic Disability and Comedy in the forum Mental Health and Positivity 1 year, 2 months ago
I used to have a “knee jerk” reaction to comedies that react to disabilities negatively. I have grown to actually appreciate them now. I now see how treating everything alike (making fun of everything) actually evens the playing field. If we are all made fun of and everything is made fun of it shows how serious negative treatment of one particular…[Read more]
Pete Barron replied to the topic Crystals, the Moon and Tarot Cards: The Rise of Spirituality in the forum Mental Health and Positivity 1 year, 2 months ago
I have always believed that from a scientific point of view that there are many things we do not know. Many of these things are because our sciences don’t know how to read the information yet. That does not mean that they don’t exist, just because they cannot be proven (yet!)
When I can afford it I often spend my “mad money” seeking answers from…[Read more]
Pete Barron replied to the topic Difficulty chewing or swallowing food? in the forum Muscular Dystrophy Tips, Tricks and Advice 1 year, 3 months ago
Like many others with MD I have trouble swallowing. Fortunately I like hot salsa and digest it well. I smother most anything with tomato sauce or salsa and it goes down fine. My wife complains that everything must taste the same, but I like the taste!
Pete Barron replied to the topic Accidentally Running Over Partners Foot With Power Wheelchair in the forum Adults With Muscular Dystrophy 1 year, 3 months ago
I haven’t run over my wife for a while, because she knows how I drive! Unfortunately we had to give up holding hands while out for a “walk and roll” as we call it. Also unfortunately, even though my service dog is really good at keeping out of my way, I sometimes make an unexpected turn or reverse and run over her toes. I’m glad I got a bigger…[Read more]
Pete Barron replied to the topic Stiff and Sore After Being Sick in the forum Adults With Muscular Dystrophy 1 year, 3 months ago
Hot water as in hot tubs, baths, or long showers are the only way I can loosen up without hurting myself! Stretching cold I often pull something that takes forever, (or maybe never to heal). Without hot water I end up curled too!
Pete Barron replied to the topic Flying a Plane in the forum Mental Health and Positivity 1 year, 5 months ago
I would love the idea of being able to ride into an airplane and be strapped down in like I do in cars, but I don’t know what would happen when we get to where ever we are going. We often fly out of the country and if I fly in my chair we have to hire a truck and ramps to keep the chair and I obviously can’t stay in it in the back of some truck.…[Read more]
Pete Barron replied to the topic Parking Tickets in the forum Adults With Muscular Dystrophy 1 year, 5 months ago
I once parked pointing the wrong way on a back street because it was the only space around forward of a driveway where I need to park with my rear entry van. I went to a movie and was back within 2 hours and found a ticket on my car. I appealed in writing on the form included, but was denied. I ended up paying the fine.
Pete Barron replied to the topic Expensive Medical Equipment in the forum Mobility Aids and Medical Equipment 1 year, 8 months ago
I used Numotion for my first paid chair. Their service and the surprise monetary bills were horrendous! I switched to National Seating and Mobility for my current chair. Their service and billing was straight forward and they react quickly when my chair breaks down. Other users and I refer to Numotion as “Nomotion” because it fits! They were…[Read more]
Pete Barron replied to the topic Car Cane in the forum Mobility Aids and Medical Equipment 1 year, 10 months ago
I use a cane seat. When you walk it is a regular cane, but when you want to sit you kick out the two other legs and a small seat comes out. I perch on it when I need to be out on my feet for a bit, (like when I pump gas.) It’s not something I could comfortably sit on for more than 10 minutes or so, but covers the short walks. I have one at home…[Read more]
Pete Barron replied to the topic Monday Shoutout: PatientsLikeMe in the forum Muscular Dystrophy Awareness 1 year, 10 months ago
Thanks Leah, I had not heard of these guys before. Now I will follow them! It seems we all have expertise in navigating our own disease, sharing some of that “hard won” knowledge might keep somebody else’s journey from being so tough.
Pete Barron replied to the topic COVID-19 Vaccine Side Effects in the forum Adults With Muscular Dystrophy 1 year, 11 months ago
I had no effect from the shots except for a little arm soreness for a day. Not to make light of some of the severe side effects some have reported, I almost wish I had more of a reaction to now know that I am (mostly anyway) immune!
Pete Barron posted an update 1 year, 11 months ago
If you want to see the lever chair, google: GRIT freedom chair. They have lots of videos of other users.
Pete Barron posted an update 1 year, 11 months ago
As far as the constipation issue, they had to forcibly cathetorize me and then used forceps and little spoons. Not exactly dinner table conversation and nothing I wish to repeat! So far (for the last year since I started, once a day with my coffee in the morning works). Coffee helps it work, but I’ll up it if I need to). I’ve never met…[Read more]
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I most certainly agree with laughing at oneself and, of course, others when I know it won’t affect them. However, I heard the R-word used in many comedy shows, and I honestly believe that language like this does affect how society treats those of us with disabilities. I am the queen of making jokes about my disability!
The fact that people are so…[Read more]