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Danielle "Dani" Liptak started the topic Rare Disease Day 2023 in the forum Muscular Dystrophy Awareness 1 month ago
Rare Disease Day is an observance held on the 28th of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families
There are over 300 million people living with one or more of over 6,000 identified rare diseases around the world. The MDA classified…[Read more]
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Danielle "Dani" Liptak started the topic Disability/ADA Lawyers in the forum Mobility Aids and Medical Equipment 1 month, 2 weeks ago
I had an accident last year due to a crack in the sidewalk. It damaged my wheelchair and I was injured. We asked the city of Wilmington to pay for the damages as they have downtown ambassadors that walk around and report things that need to be fixed. I was denied and the city of Wilmington was found to be NOT at fault but instead the construction…[Read more]
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Danielle "Dani" Liptak replied to the topic Traditional Family Values and Disability in the forum Adults With Muscular Dystrophy 1 month, 3 weeks ago
It is hard for many to be seen as a caregiver because women mostly do it. I have seen this change with people becoming more accepting of the changing gender roles. Unfortunately, many in power and those getting older are not as keen on the changing roles of males, females, etc. I think most people have to look past the roles and ask if it is not…[Read more]
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Danielle "Dani" Liptak replied to the topic Caregiver Appreciation in the forum Member Spotlight 1 month, 3 weeks ago
Oh, of course, I think I feel most like a burden when the argument is about caregiving! Especially if during or after the argument I am still in need of help from the person!
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Danielle "Dani" Liptak started the topic National Registry for Your Type of MD? in the forum Clinical Trials 2 months ago
Every year I get a letter from the National Registry of Myotonic Dystrophy and FSHD Muscular Dystrophy Patients and Family Members. I have participated in this registry since I was diagnosed at 12. I am now 34 and hope after years of participating it will help advance research.
Do you receive or are part of an ongoing registry having to do with…[Read more]
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Danielle "Dani" Liptak replied to the topic Self Defense for People with Disabilities in the forum Adults With Muscular Dystrophy 2 months ago
Yes, I haven’t been able to find an adapted self defense class, but there are some Youtube videos for disabled people!
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Danielle "Dani" Liptak replied to the topic Shaking due to muscle weakness in the forum Adults With Muscular Dystrophy 2 months ago
I notice if I move rapidly or repeatedly the weakness/ shaking starts, so taking frequent breaks, although frustrating, helps.
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Danielle "Dani" Liptak replied to the topic Shaking due to muscle weakness in the forum Adults With Muscular Dystrophy 2 months ago
Could it be dehydration? Lack of a vitamin or mineral in the body? Stretching? It seems like there is always a list to go through and cross out to figure out the cause or treatment.
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Danielle "Dani" Liptak replied to the topic Car Cane in the forum Mobility Aids and Medical Equipment 2 months, 1 week ago
Hi, Pete, just checking in to see how you are doing. How were the holidays?
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Danielle "Dani" Liptak replied to the topic Car Cane in the forum Mobility Aids and Medical Equipment 2 months, 1 week ago
Hi, Jerry! How are life and the new year treating you?
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Danielle "Dani" Liptak replied to the topic Virtual MDA Walks in the forum Muscular Dystrophy Awareness 2 months, 1 week ago
Hi Glendalee! I wanted to check in and see how the new year has been treating you!?
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Danielle "Dani" Liptak started the topic Voice Activated Items in the Home in the forum Muscular Dystrophy Tips, Tricks and Advice 2 months, 2 weeks ago
My dad bought me the Smart Bulb from Feit Electric. The bulbs are voice-activated and can connect to most Bluetooth and wifi in homes. I haven’t been successful in installing them yet even after downloading the app on my phone and watching the instructional video. My friend who has voice-activated lights is coming over to help me. They said it i…[Read more]
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Danielle "Dani" Liptak replied to the topic Caregiver Appreciation in the forum Member Spotlight 2 months, 2 weeks ago
I agree, sometimes I forget that they are not only my parents they are my caregivers as well. Which is a different job than parenting, in my opinion. What do you think?
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Danielle "Dani" Liptak replied to the topic What can grief do to your body? in the forum Mental Health and Positivity 3 months, 1 week ago
I whole heartedly agree with that last statement! We get up and keep fighting, thanks for sharing!
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Danielle "Dani" Liptak replied to the topic The Most Wonderful Time of Year for Allergies in the forum Adults With Muscular Dystrophy 3 months, 2 weeks ago
I have a Roomba that runs every couple of days and has significantly helped with dust and dander from my dog and cat. I also have a little wand with a dust cloth on it that I can use around fragile items or things that I can’t move easily. That along with having someone come and change my house’s air filters in the ceiling regularly has helped…[Read more]
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Danielle "Dani" Liptak started the topic Caregiver Appreciation in the forum Member Spotlight 3 months, 2 weeks ago
I was unaware until recently that November was National Caregivers Month! This is to recognize those who help care for their loved ones day in and day out. If this describes you, thank you! You are seen and appreciated.
Do you feel seen as a caregiver? What keeps you going when you are feeling tired and underappreciated?
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Danielle "Dani" Liptak replied to the topic What can grief do to your body? in the forum Mental Health and Positivity 3 months, 2 weeks ago
I agree about being kinder to ourselves, I forget, especially living in a place that highlights hard work until you are exhausted but it doesn’t have to be that way. We get one body, and we must try and take care of it the best we can!
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Danielle "Dani" Liptak replied to the topic What can grief do to your body? in the forum Mental Health and Positivity 3 months, 3 weeks ago
Yes, I agree about being tired, somehow even though it feels all mental, maybe my brain tries to take the pressure off the mind and onto the pain or fatigue of the body.
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Danielle "Dani" Liptak replied to the topic Thanksgiving Past and Present in the forum Muscular Dystrophy Events And Activities 3 months, 4 weeks ago
Most of my family is a long distance away. Since my parents are older my mom is tired of cooking for hours so we went out. There is a risk when going out with wait staff, and other customers, and the food not being to people’s liking, but it also saves time and energy (not money though). I think next year I will offer to do some of the cooking, if…[Read more]
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Danielle "Dani" Liptak replied to the topic Storing food to take places in the forum Muscular Dystrophy Tips, Tricks and Advice 3 months, 4 weeks ago
I have been looking for a low-carb low sugar electrolyte mix or drink, what kind do you enjoy?
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