Danielle "Dani" Liptak

It was a bit of both, a difficult part to find and a rip-off. I am still waiting for some features stuck in China but hoping they will make it this way soon!

Tracy, I can only imagine your frustration. When I was diagnosed at 12, I had no one and knew no one with the disease. I was young enough that I pushed it out of my mind until I started to become visibly affected. I think the MDA or NMD United has a person you could contact to see if a registry is coming out or if one could be made. Maybe it just…[Read more]

https://www.nih.gov/health-information/nih-clinical-research-trials-you

Here is what I found: https://rarediseases.info.nih.gov/diseases/9676/miyoshi-myopathy/research

Wow. There is no way I could ever afford that! I am thankful to have my own transportation, but to hear that you must go to the dentist and pay that much for a vehicle! It is SHOCKING. On top of that hearing, you don’t get any refund or insurance coverage for it. I wonder if other members have the same experience as you! Where are you located, if…[Read more]

I had my throat dilated, and it helped tremendously with acid reflux! I wonder if its something insurance will cover for MD patients?

Hot tubs/ hot showers are a great idea! I could also get a bucket for my feet and soak them in Epsom salt while in the hot shower.

Hi Gail,

Do you have a physical and occupational therapist come to your home and work with you? They have helped me tremendously in moving around more and thinking of better ways to move my body that do not require much energy. Do you have access to a local pool? As well as a caregiver?

Hi, Robin!

I hope your appointment goes well this month for you!

I honestly believe the patient knows more about themselves than the doctor, so they should most certainly consider what you’re feeling when making decisions. Decisions should be made together, not by one person.

I appreciate you responding and sharing your experience. It is always nice to know that I am not alone in the things I go through, but I also wish more things would change, so it doesn’t happen to the next person!

I might have to travel over two hours to find a “good” neuro, which is worth it to avoid feeling a certain way by ignorant people.

They were phenomenal and had been doing this for 20 years. They have seen every disability under the hot sun! First, they would speak to the people who wanted to surf, their families/caregivers, and work with them on what made them feel safest. I know they have this event in California! Maybe you can surf one day too! It was exhilarating, and I…[Read more]

That is a great suggestion! Sometimes I forget that stretching, as simple as it seems, can significantly impact one’s day-to-day. Thank you for the reminder, Jerry.