Leticia Bonfanti

Are you part of a national registry for your specific type of MD? I believe in the Facioscapulohumeral Muscular Dystrophy Patients and Family Members Registry. I fill out yearly forms and up to date on new findings and research.

Do you have a rare form of MD but are not part of a national or international registry? I like the registry because I…[Read more]

During the lockdown and even now, I spent a lot of time in the kitchen. I tried new recipes and old favorites. I got a few new kitchen appliances too, but my favorite is my air fryer. I use it for so much, from chicken wings to zucchini chips.

Do you have a favorite kitchen appliance? are you like me and live in a small space, so you have to be…[Read more]

How do you feel about taking down holiday decorations once it is over? Do you have someone help you? Is it easier to set up or to take down decorations? Does your house feel bare after, or do you like it more without the decorations?

Do you think people were extra decorative this year because of the pandemic? I noticed the majority of my…[Read more]

How do you avoid bumping into or running over people or animals when using your mobility devices?

I have run over my dog’s toes while walking him on the leash, but he has never reacted. I still feel terrible. I also worry when I use my walker at home, and my cat is walking next to me that I will bump or run her tail over. I make sure not to do…[Read more]

Have you ever had a hernia? I recently underwent a hernia repair along with another surgery. Have you had acid reflux or diagnosed with GERD? Did you know a hernia can cause bad acid reflux and other issues. I often wondered if, in the past, if I caused the small tear in my esophagus from falling. Do you wonder if your type of MD can affect your…[Read more]

A little over one week ago, I had major surgery for gastrointestinal issues. The recovery has been challenging, and I was in the hospital for close to a week. I was very impressed with the COVID restriction in the hospital. It was lonely not having any visitors, and I was so weak from the surgery that I couldn’t enjoy much of anything. I have been…[Read more]

Have you ever been surprised by a person’s knowledge about disability, accessibility, or your type of MD? Did you feel comfortable asking them where did they learn about it and why?

I have only met one or two people that were not disabled that were well educated about disability and muscular dystrophy. One was a doctor that I met when I was out…[Read more]

I live with my parents, so being told what to do by them is a given. It has helped set boundaries and remind them that I am 31 and have to make decisions for myself even if it seems like the wrong thing. My parents have recently been very nervous about the skyrocketing COVID cases and do not like when I go out at all. The frustrating thing is that…[Read more]

I have broken two glass things today and realized if my parents weren’t on the other side of the house and I couldn’t call them for help, I would have a real hard time cleaning up the glass. I worry especially since I have a cat, and she could get glass in her paws.

If you drop and break something glass or otherwise, how do you clean it up if you…[Read more]

Are you going anywhere that requires a negative Coronavirus test? Did you administer the test yourself, or did someone else do it for you? Was the test inside or outside in your car? Did you have any side effects from the test, such as pain in your eye or nose? How long did you have to wait for the results?

This week is the American Holiday of Thanksgiving. Leah and I will be off this Thursday and Friday for the holiday. We just wanted to let you all know that it might take longer to respond during that time. Thanks for understanding, and we hope you all have a great week and stay safe!

Has your state or country gone back into lockdown? Were you surprised to see such an increase in COVID cases, or did you think the wintertime would bring more cases? What have you thought about how Coronavirus has been handled where you live? Are you more prepared now than at the beginning for another lockdown? Will you or have you stocked up on…[Read more]

Everyone throughout their life will get a scar or two. Do you have many scars? Are any of them MD related? How have you taken care of your scars or do you just leave them be? What stories do you have to go with any scars?

I have a lot of scars on my knees from falling but the stories are usually fun, like when I totally wiped out roller blading!…[Read more]

During the lockdown, I became more of a tea drinker! I found dealing with a teapot to be difficult and cumbersome. I saw online some different teapots, but I thought the Uccello Tipping Kettle was the coolest! Now it is a lot of money, but there have had some accidents with boiling water, and sometimes peace of mind when pouring scalding hot…[Read more]

Depending on how I sleep, I end up drooling. Sometimes it isn’t very pleasant, and occasionally it can affect the skin around my mouth. I don’t know if there are things that can be done about it, but I am curious if others with MD deal with this issue? Do you have special drool-proof pillowcases? Have you found something that works to reduce drool…[Read more]

I had to take my cat to the vet and do that, and I need assistance from my father to help me get her in the crate and transport her to the car. My cat was recently diagnosed with diabetes, which is common in older cats. I was very anxious and felt guilty about the whole situation. The vet wanted one person to learn how to administer the medication…[Read more]

I recently saw the Netflix series, The Queen’s Gambit. It was a great story, and I enjoyed it very much! If you haven’t seen it, I highly recommend it.

Do you play chess? Have you ever competed in a chess competition? How about checkers? Both games require knowledge and practice. I wish I had learned when I was younger because it seems like a…[Read more]

I came across a post in my MD group today from a woman that recently broke up with her significant other. She posed questions about whether or not he has a right to take away custody from her due to her MD. I do not know the legality of that situation, but I believe that one should not have their parental skills questions just because they have a…[Read more]

Do you have a favorite clothing brand? How long have you been shopping with them? How has your choice of brands changed over the years? Did you go to malls and shop store brands, or did you prefer catalogs, or now, online? Do you have a brand that you trusted, but they have become better or worse over the years? What makes you want to spend your…[Read more]