I have occasionally seen this. More often I see places where there aren’t enough spaces. But when I’ve seen someone in these spots I usually get angry and drive on. Maybe I need to come up with a better way – make up some notes to leave by car. Or take a picture and send to local authorities. I’d love to hear other ideas.

Heartburn is something I’ve had since age 10. Long before MD symptoms. Also runs back generations in my family so I don’t think for me it’s related to MD. If I take just two Prilosec a week that right there eliminates it. Tums is good, too. But I definitely find when I eat less that helps.

I haven’t and that might help. I’ll have to look those up. I’d like to use my Mac more but iPad has been easiest to use so far. But the pas is a good idea!

My Cuban/Lebanese grandmother always said (in Spanish), step by step you can reach the ends of the earth.” It helped me to realize that you can reach every goal a little at a time, setting many goals as you approach your final success. 💪🏽

I use a lot of voice recognition, but it makes so many errors that sometimes going back and fixing is just as difficult. I wish they could make something better because I would rather write something by speaking and then make some edits to finalize. I also find it less difficult to type on an iPad screen than to use a laptop where I have to… Read more

Funny because just last night I had a zoom call at 7pm. I went into our second bedroom and closed the door. My doggie proceeded to sit outside the door whining. I let him in. He just sat on hardwood floor at my feat for the hour. 😊

Love this column by Hawkin. I have written several columns about living creatively. Those of us with disabilities are master at this. This creative living is essential. While I focused more on purely creative living to overcome physical obstacles, Hawkin takes this a step further to the realm of mindful creativity. Great!

😊🙏🏽

I definitely like harder to softer. If it’s too soft, like you I have trouble moving around. I have one now that’s similar to purple you mention. I only have a little trouble sitting on edges. But once on it is soft but still solid. Nice.

Just looking forward to being outside! 😊💪🏽

Thanks! 🙏🏽

In early May I was able to do a face to face for my six-month assessment in the prednisone clinical trial I’m in. I also did one tele session with a neurologist. In July I have a face to face appointment with my new primary. My hope is no falls that I need ER for. Let’s all stay safe!

I could be wrong but I thought it was more an issue of eating rather than brushing. I know for me one side is definitely used more and therefore there is more normal wearing out of teeth. And I know I have a tendency definitely to chew more with one side of my mouth.

Great! Glad you’re both back! Our fearless leaders 💪🏽

Woohoo good to see you all back 😊

I agree this will be difficult and most everyone I know will not be jumping into normal activity. I think back to January to mid March when this virus must have been incubating and then exploded as people began to get sick. It took two to three months of no sporting events or business travel or conferences. No Disney or Vegas. No bars and pubs… Read more

As a matter of fact, today. I need to go back for the six month post-testing for a clinical research study I’m in. It will mean about four hours of testing. MRI, bone scan, blood work, strength testing, walking test, etc. I’ll be in a mask and in an area of the hospital that’s been shut down for a couple months but it’s a big hospital… Read more

I was not aware of this book but I’ll be delving into it. Sounds like great stuff.

This is good, and very important. I founded the LGMD2L Foundation and we maintain a registry. But we haven’t reached this level yet. I would love to look for partnerships to do something like this.

I try to break it up. I might do a little stationary bike to get my legs going. Or sometimes I do small walking increments in my condo. Maybe walk 500 steps in some circles. Rest. Repeat. I also have some small dumbbells that I can do some lips with my shoulders and arms.

I’m doing ok and my column out in a couple hou te talks about how I’m living, learning and thriving during this pandemic. I hope we are a step closer each day but we need to plan for some weeks and possible months of this still ahead. Hope you are all well and safe.

People are unique. We all bring different life experiences to our decisions.  People with disabilities are not one size fits all. We are as unique as everyone else. I lived 47 years without symptoms of my MD. If I had a choice I’d say yes, let’s go back to my functioning prior to MD. But I can say that in some ways I’m living my best life now.… Read more

Interesting column and I will offer some similar ideas in terms of opportunities during this time. I truly believe that so many of us with disabilities and physical limitations have gone through some of what society at large is going through today with how we are living in the bubble of social isolation.

Thank you, and I just learned it will be a week from tomorrow!

Great tips, Kevin. My column tomorrow will focus on a similar bent and look at living, learning, thriving when we need it most. This is a great time to stay safe and to do some reflection on life. I hope everyone can use this opportunity to grow.

Just my personal opinion but I think we are on the cusp of major breakthroughs in genetic science. Whether it’s our knowledge of gene therapy and how to achieve it, or technologies like CRSPR, we will see some big things ahead.

This was fabulous. I saw it and loved it. In some of my columns I’ve talked about advocacy and effecting change in society. Positive social change. These great group of individuals with disabilities did that. We can learn a lot!

Thanks for your reply. It sounds like things are going very well for you with your latest choice. I think what you mention is key, we are all different. For me, I am still able to go out and walk, using my hiking poles, and maybe walk up to a mile depending on the terrain. I hope this chair I just purchased works for me for a few years. I… Read more

I like this. I’ve written a few columns also on goal setting and being realistic. We can all have great success in improving our day to day lives. Appreciate this.

Haha 💫

I’ve already alerted Leah I’m definitely a columnist but not a communist haha. Hope you all can read column. Would love feedback, as always.

Leah, I agree with you and I don’t think we need to wait for more cases to come forward. We need lawyers who can start the process now and once it is moving forward we can advertise it and trust me more people will come out. And it’s not just Uber trust me.

I think the reality is that a guide dog needs to be able to access everywhere their own accesses. Fully. Completely. Always. How do we handle this? We need lawyers willing to work in this system with real power for those of us who need. Recently I spoke with a disabled lawyer who made promises and was ready to help with some battles and… Read more

I actually had it wrong on Twitter where I said March 2. But my column on March 12 will focus on this. I wrote a column already some months back on my first wheelchair ride. This new piece will go deeper.

Many people have fallen into the “we can’t pay for it” hole. That’s a shame. We are currently paying over $4 Trillion for healthcare in this country. I have written columns about having to pay a medical system $700 just to use a room for 15 mins to get a cortisone shot. I have also had letters printed to the editor of major newspapers… Read more

I’ve done these the last few years and usually it’s me and my wife walking for the “New Normal.” We do part of the walk and make a donation. I haven’t taken it bigger yet because I am focused on raising money for LGMD2L Foundation specifically. 😉

Leah, great!

Leah, I should be there again this year. Let’s find time to connect.

Other than my annual physical, the only time I have had to get any medical treatment over the last few years is after a fall. My most recent fall about six months ago led to a severely torn rotator cuff in my right shoulder. I am still healing this and may be about 85% at this point. I know there will be other falls in the future and it’s hard… Read more

As you know these issues are my pet peeve. See my latest column;

Society Is Missing the True Definition of Inclusion

That’s how it is when it snows ugh. Grounded for a couple days. I have a couple of places I’ve learned of where I can park underground and get to. It’s important to get out.

I have thought about getting into people’s homes often. I don’t use a wheelchair but I can no longer step up easily, even on relatively short steps. In fact, even street curbs are hard. I can easily fall. I avoid going to people’s homes. Even when I visit my son in Wisconsin we stay out of his house. My brother is doing Thanksgiving this… Read more

I think it’s just a crazy day that I’ve never been a part of 😂

I use a heating blanket. I turn it on before bedtime. Then after I read and I’m finally ready to sleep I turn it off. I’m ok once I’m warm and under my three blankets. 🙂

Dani, I think it’s a fairly healthy snack too 🙂

Dani, hope you have read my column, ‘Disabled’ vs. ‘Having a Disability’: Debating the Power of Words. I haven’t seen Queer Eye and will try to look it up but there is no doubt that people with disabilities are resilient and as I’ve written about in other columns, the best at creative living. I don’t think the general population realizes that.

I looked up this hashtag on Twitter and that’s very cool.   I haven’t done anything like this but I may have to think about dressing up my cane.  I hope this becomes a bigger movement!

I’d love MD podcasts. On February 10 I’ll be driving alone from Chicago to S. California and hoping to do some listening as I drive.

I don’t think the House would pass anything like this so we don’t have to worry. But of course it’s crazy. Just because I have a disability it doesn’t mean I can’t go to a baseball game like I did last night. And even though I might choose to post great pictures that look like it was an amazing evening, because public venues are often so poor… Read more

Leah, yes! It feels so much better.