Pete Barron

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]

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.

I like to respond to the “What’s wrong with you?” question by responding: “Nothing! What’s wrong with you?” Then they get to feel how that question feels and if they are not too put off they rephrase the question.

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]

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]

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]

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.

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]

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]

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!

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]