Danielle "Dani" Liptak
Forum Replies Created
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Yes, to all those things, but right now, I can’t even get Numotion to send me the itemized recipes so I can give them to the city’s insurance/ lawyers. This is because it has been SO FRUSTRATING!
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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!
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I’ve always used Old Spice because that’s what my dad used and I would end up taking his from him, haha.
I’ve tried the more “organic” deodorants but I had irritation and it got expensive so I switched back to Old Spice. I guess if it isn’t broke don’t fix it!
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The actor Troy Kostur is awesome! He said the award was dedicated to the deaf community, the CODA community, and the disabled community and that it is OUR moment.” I always appreciate seeing disability represented and even better when they win awards! I still know many people who have not seen Netflix’s Crip Camp, a phenomenal documentary about disability. I hope to see more disability representation in mainstream media, such as local news or even national news. I believe the future will be accessible.
Do you feel like a person with muscular dystrophy that you are a part of the disabled community? Can you explain how either you feel like a member or an outsider? In what ways or experiences have you become closer to the disabled community?
#RepresentationMatters #DisabilityInclusion #DisabledAndCapable
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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 takes someone asking and getting the ball rolling.
Here is what I found: https://www.ncbi.nlm.nih.gov/gtr/conditions/C2678065/
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Here is what I found: https://rarediseases.info.nih.gov/diseases/9676/miyoshi-myopathy/research
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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 I may ask?
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I had my throat dilated, and it helped tremendously with acid reflux! I wonder if it’s something insurance will cover for MD patients?
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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.
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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?
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Hi, Robin!
I hope your appointment goes well this month for you!
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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.
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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.
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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 felt safe the whole time.
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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.
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I find it so concerning that you are forced to use a PCP that doesn’t listen or order tests covered by insurance and deemed necessary. I hope you are allowed to use someone else because that isn’t right!
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Agreed! I hold them to a higher standard for the years and hundreds of thousands spent on their education, but you are right. They are still human!
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I think it is best if I don’t snap out of it right away and sit with it (pun intended). I believe nowadays in feeling what you feel in the moment but never letting it linger too long. “This too shall pass” is a motto I am trying to adopt.
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Hey Larry, I to enjoy staying in my room cocooned under my covers but I am also extroverted. I like hanging out with friends etc. Do you go out, do you live somewhere that has bars, parks, place to hang out alone or with friends? I’ve tried to go to restaurants and movies by myself more. What do you enjoy doing outside of your home? Is transportation or money the issue as well?
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Since having Covid, have you noticed any long-term side effects?
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If you don’t mind sharing, I would be very interested in hearing how your 2nd booster goes!