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… Read more

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… Read more

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… Read more

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!

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… Read more

Yes, I haven’t been able to find an adapted self defense class, but there are some Youtube videos for disabled people!

I notice if I move rapidly or repeatedly the weakness/ shaking starts, so taking frequent breaks, although frustrating, helps.

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.

Hi, Pete, just checking in to see how you are doing. How were the holidays?

Hi, Jerry! How are life and the new year treating you?

Hi Glendalee! I wanted to check in and see how the new year has been treating you!?

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… Read more

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?

 

I whole heartedly agree with that last statement! We get up and keep fighting, thanks for sharing!

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… Read more

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?

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!

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.

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,… Read more

I have been looking for a low-carb low sugar electrolyte mix or drink, what kind do you enjoy?

For school-aged children with disabilities such as MD, it is essential for them to participate in extracurricular activities to incorporate play into their day. While having fun playing sports, making art, etc, they also develop skills that will help them in school and during life. There have been studies that have proven positive… Read more

Thanksgiving. Somedays it is harder to be thankful for things. This year there were many changes and ups and downs.

Optimism and thankfulness are challenging to navigate in the disability community. Thanksgiving can be challenging for some who cannot travel to see their family. Many friends become family or Thanksgiving is spent with a… Read more

This past week I lost a dear friend.

I wondered about the effects of grief on the disabled body.

Grief can cause various effects on the body including increased inflammation, joint pain, headaches, and digestive problems. It can also lower your immunity, making you more susceptible to illness. Grief also can contribute to… Read more

Does anyone else have stickers or colored parts of their mobility device? When I used a can to walk around I tried to have it ombre colored!

I recently had to work my regular Sunday job at a local boutique but there was a special convention in town so there were more than the normal amount of shoppers. Five hours later I am asleep by 8 pm, and for the next two days I am in PAIN! It is so hard to imagine being able to work 9 to 5 again in an office without being able to rest, lay… Read more

Stress can make neuromuscular conditions worse. For example, research published in the journal Developmental Biology found that stress can induce muscle degeneration, making them less adaptive to temperature changes. A few ways people with MD have managed stress during the school year. Activities such as adaptive yoga, meditation, and… Read more

DAYTIME consists of the time you first wake up in the morning up until you start to eat your last meal of the evening.

NIGHTTIME consists of the time from the start of your last meal of the evening until you go to sleep at the end of the night.

Magnesium, which most people are deficient in and helps the body relax, is one of the most… Read more

I ended up wasting my entire Wednesday waiting for Numotion to call or come by my house. When I finally gave up and had to go to work I felt totally defeated by them. I called the next day and although the woman was kind on the phone she honestly made me feel stupid and like I was in the wrong. I still have no idea what is going to happen or who… Read more

If you travel often or have special dietary needs what have been the best ways to travel with food? I use Bento Boxes and soup containers. I also have a mini cooler that has worked well for me in the hot summer months. I used to need insulin but now I take a pill so I don’t need to worry about keeping the insulin cold. I carry around snacks… Read more

I like that you compared it to customizing a car, it is our freedom chariot. It is a great way to show personality and be a conversation starter!