Log In or Register to Join The Conversation!

  • Are you on dating apps and still looking for a relationship with someone? How are you going on dates amidst the pandemic?
    I am newly single again and although I’m not yet eager to get back in the dating game, I wonder what dating would be like with Covid still present. I am very immunocompromised and have to be very careful about my health w…[Read more]


  • Establishing and maintaining good relationships means shifting our focus from the “burden” mentality and instead showing compassion and gratitude for the person helping us. Hawken’s newest article “Overcoming the Idea of Being a Burden” delves into the “burden” mentality felt by those with disabilities and ways we can defeat this mindset.
    [Read more]

  • Leah Leilani posted a new activity comment 4 weeks ago

    Hi there Brian and welcome to the Muscular Dystrophy Forums. Dani and I are happy to have you as a part of this community.

    Before I tell you about the forum, I would like to introduce myself. My name is Leah Leilani and I am a co-moderator for the forums alongside Dani Liptak. I was born with a rare form of Muscular Dystrophy called…

    [Read more]

  • Glendalee, although I’ve never visited Hawaii and don’t know much about their available medical care, I do have Hawaiian blood and have many relatives in Hawaii. I can only imagine the lack of resources available but I commend you for not giving up and continuing to advocate for yourself. That is how the best things come to fruition, by arming you…[Read more]

  • Are you or have you been a part of the Muscular Dystrophy Association? For example, maybe you’ve been an ambassador or have been featured on their telethon? Now that you’re older, what is your opinion of the MDA and how they operate?
    Some past ambassadors or people that used to help the MDA now feel that the organization exploits children in ord…[Read more]

  • Day 22 of 30 Days of MD features Vincent and Grazia Kelly, an interable couple who love to travel. In their story, they talk about  their adventures and how they find accessibility throughout the cities they’ve visited.

    Read their story here and make sure to follow our initiative on our Instagram account @mdnewstoday
    How do you deal with ac…[Read more]

  • Epidural Steroid Injections are a non-surgical treatment used to relieve and manage lower back pain, leg pain and pain caused by Sciatica.
    Have you ever had an Epidural to relieve pain in your back or pain caused by a back issue? How long did the relief last for you and did you experience any negative side effects? Did you have to look for other…[Read more]

  • Phil, did you know your food was going down in an odd way prior to the test? It’s great to hear that you’ve had results with the exercises. I find it hard to know if muscles are actually capable of being strengthened with a disease like MD. I have problems with producing energy and whenever someone suggests strengthening a part of my body with exe…[Read more]

  • Do you keep any of your old power wheelchairs in case your current one malfunctions?
    Wheelchair providers recommend that if you choose to store your old power wheelchair in case of an emergency that you should drive it around frequently in order to maintain the battery. How often do you use your old power chair?

    • Yes!! I have my old powerchair in my kitchen; I use it to clean my cats’ litter boxes! Also, I have taken it on the airplane with me because I was worried that my newer and more expensive chair would get damaged!

  • Some people with MD experience weakening of the throat muscles, leading to difficulties swallowing and aspirating. Is this something you struggle with? What are some things your doctor or physical therapist has recommended to help with these problems? Have you tried exercises to strengthen your throat muscles and have you had any positive results?

    • The last time I went in for an endoscopy, they stretched my esophagus. I don’t know how and it sounds interesting, but that was to help with acid reflux, but I noticed it was easier to swallow after too.

  • Leah Leilani posted a new activity comment 1 month ago

    Hi there Anjar! I’m so glad you were able to join the forum! Here at the MD Forums, we are like a support group, sharing experiences, giving advice and generally discussing life with MD. Don’t hesitate to join in on any of our many forum topics. This a safe and judgment free zone. If you have any questions, want Dani and I to cover a spe…

    [Read more]

  • Leah Leilani posted a new activity comment 1 month ago

    Hey Melissa! Thank you so much for joining the forum! Here at the MD Forums, we are like a support group, sharing experiences, giving advice and generally discussing life with MD. Don’t hesitate to join in on any of our many forum topics. This a safe and judgment free zone. If you have any questions, want Dani and I to cover a specific t…

    [Read more]

  • Leah Leilani posted a new activity comment 1 month ago

    Hi there Lee and welcome to the Muscular Dystrophy Forums. Dani and I are happy to have you as a part of this community.

    Before I tell you about the forum, I would like to introduce myself. My name is Leah Leilani and I am a co-moderator for the forums alongside Dani Liptak. I was born with a rare form of Muscular Dystrophy called…

    [Read more]

  • Leah Leilani posted a new activity comment 1 month ago

    Hi there Ensaf and welcome to the Muscular Dystrophy Forums. Dani and I are happy to have you as a part of this community.

    Before I tell you about the forum, I would like to introduce myself. My name is Leah Leilani and I am a co-moderator for the forums alongside Dani Liptak. I was born with a rare form of Muscular Dystrophy called…

    [Read more]

  • Leah Leilani posted a new activity comment 1 month ago

    Hi there Daigle and welcome to the Muscular Dystrophy Forums. Dani and I are happy to have you as a part of this community.

    Before I tell you about the forum, I would like to introduce myself. My name is Leah Leilani and I am a co-moderator for the forums alongside Dani Liptak. I was born with a rare form of Muscular Dystrophy called…

    [Read more]

  • Leah Leilani posted a new activity comment 1 month ago

    Hi there Carlos and welcome to the Muscular Dystrophy Forums. Dani and I are happy to have you as a part of this community.

    Before I tell you about the forum, I would like to introduce myself. My name is Leah Leilani and I am a co-moderator for the forums alongside Dani Liptak. I was born with a rare form of Muscular Dystrophy called…

    [Read more]

  • Leah Leilani posted a new activity comment 1 month ago

    Hi there Vincent and welcome to the Muscular Dystrophy Forums. Dani and I are happy to have you as a part of this community.

    Before I tell you about the forum, I would like to introduce myself. My name is Leah Leilani and I am a co-moderator for the forums alongside Dani Liptak. I was born with a rare form of Muscular Dystrophy called…

    [Read more]

  • Leah Leilani posted a new activity comment 1 month ago

    Hi there Deniz and welcome to the Muscular Dystrophy Forums. Dani and I are happy to have you as a part of this community.

    Before I tell you about the forum, I would like to introduce myself. My name is Leah Leilani and I am a co-moderator for the forums alongside Dani Liptak. I was born with a rare form of Muscular Dystrophy called…

    [Read more]

  • Leah Leilani posted a new activity comment 1 month ago

    Hi there Steve and welcome to the Muscular Dystrophy Forums. Dani and I are happy to have you as a part of this community.

    Before I tell you about the forum, I would like to introduce myself. My name is Leah Leilani and I am a co-moderator for the forums alongside Dani Liptak. I was born with a rare form of Muscular Dystrophy called…

    [Read more]

  • Thankfully, I don’t live in an area that is prone to fires but the ash does travel to where I live and the sky has been very red colored lately making it look as if a permanent orange filter is covering everything. It’s almost nice that I’m forced to wear a mask because not only am I protecting myself from Covid but also from the ash particles in the air.

  • Load More
Copyright © 2017-2020 All rights reserved.

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account