Pete Barron

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!

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…[Read more]

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.

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…[Read more]

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…[Read more]

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…[Read more]