Pete Barron

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]

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]

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!

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]

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!

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.

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.

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]

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]

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!

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]

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!

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]

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.

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]

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]

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.

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!