Pete Barron
Forum Replies Created
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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 function easier too!
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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 feel and function better. Certainly there are things you have to watch out for like addiction and side effects, but taking medications seems a worthwhile trade-off to help us function more normally. The attitude that we are not meant to take medications seems very primitive!
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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!
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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 rely on them! By the time 5 years has gone by and I’m eligible for a new chair, my old chair is held together with duct tape and still not doing all it is supposed to do. If power chairs were cars, they would all be recalled! -
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!
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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.
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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.
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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 group is “laughably” bad. We all need to laugh at ourselves, it shows that we are more than our disability, that we are human.
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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 astrologists, tarot readers, and various “fortune tellers”. Certainly some have been fakes or at least their predictions were way off the mark, but some have been scarily accurate! Thirty plus years ago I saw my then future wife in a trance that one of these practitioners put me in. The whole thing was recorded on audio tape and when we listen to it, my wife and I both get chills. I figured out right away after I met her for the first time who she was. I even told my sister, who I was drinking coffee with at the time, that I would marry that woman we just met! We have had animal psychics who learned things that really happened from our pets that there was no way the psychic could have guessed.
Keep your mind open and keep searching!
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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!
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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 dog, so I’ve never hurt her seriously. She yelps loudly when I do it and everybody stares at me for abusing my dog!
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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!
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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. It’s a pain in the neck, but I always fly with my scooter for getting around in airports and to get it into taxis when we arrive.
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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.
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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 helpful until I ordered the chair and after that would not return my calls until it was time for my next chair! I told them I was switching suppliers and why.
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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 and one that travels in my car. They cost less than $50 at mobility stores.
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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.
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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!
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I just got a grant for (from CAF: Challenged Athletes Fund) and purchased a “Grit Freedom Chair”. It is a manual lever drive chair meant for off road. I had been looking for something to use on relatively flat trails and across the beach to get to the water. I decided against the all-wheel drive power chairs because they are so heavy and maintenance and battery life would be problematic. The Grit chair is light, comfortable, and easy to propel. For the levers I need no grip and they are an easy position for my hands. Were I to design a chair to go off road, it would look like this!
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I have a big carabiner on my chair seat belt and I clip a heavy duty re-usable bag onto it and carry everything that way.
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I take PEG (Polyethylene Glycol) daily, the common brand name is Miralax. My colon shut down completely last year due to my muscular dystrophy and I had to be hospitalized to clear it out. The Docs there said if it continued they would have to carve out a new anus (which didn’t sound like much fun!). Since then I’ve taken PEG daily and have had no problems for over a year now. Good luck!
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Hello Susan,
Check to see if your husband was checked for Myotonic Dystrophy type 2. Type 1 is very common, so is often tested for, but type 2 (which I have) is on a different chromosome, which is often overlooked. The state of modern medicine is that they have to test for every specific thing. There is no wholistic genetic screening to rule something out.
It’s helpful to know what we have so we can predict the progression even if there is no cure or good treatment. MS should also be looked at as the symptoms are similar. Good luck on your search!
I was undiagnosed for many years before I found out what I have. I had given up testing for finding what I have and just kept testing through trial and error for what helped me and what made things worse. By the time I was tested for the proper chromosomal abnormality, I had a whole list of things that helped or didn’t that fit nicely into the profile when I finally got it. My primary Doc at the time told me that many things are never diagnosed correctly and that to find out what worked and what didn’t was often more helpful.
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My sister who has MD2 like me, spends most of the time walking with arm crutches. She has fallen and broken bones in both hands too many times to count. She has also had countless surgeries to put them back together again with varying degrees of success. Somehow our bones don’t heal well or sometimes not at all. With one or the other hand in a cast she can’t usually use more than one crutch, which makes her more unstable. It’s a never ending cycle! Once again as far as walking, I say “No be there!” I don’t often fall when I’m sitting and when I do the ground is a lot closer! My regrets for your hand pain, that’s no fun!
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I like being a nice guy too, but when somebody is rude to me I try to send it back! They can’t complain that I’m rude when they said the same to me. Most people kind of “guffa” and then rephrase it and I will explain. I like the opportunity to educate people, I see that as part of our job.