@leah-leilani
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Leah Leilani started the topic Taking Medications for MD and Other Conditions in the forum Adults With Muscular Dystrophy 2 days, 2 hours ago
A controversial subject has been on my mind ever since a recent doctor’s appointment. My cardiologist made the statement that the human body is not meant to be on medication, especially not long-term.
To me, if the human body needs the assistance of medication and can, in any way, benefit from it and live a better life then there is an abs…[Read more] -
Leah Leilani replied to the topic To Save the Wheelchair or Not to Save the Wheelchair; The Story of a House Fire in the forum Adults With Muscular Dystrophy 1 week, 1 day ago
You’re right, Ian. It is been hard to get over. In fact, I woke up the other night thinking that I smelled smoke again and had to walk around my house to make sure that everything was okay. Jeez, it’s almost like which one costs more-the insurance or a new wheelchair? It’s similar to what came first, the chicken or the egg, haha!
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Leah Leilani replied to the topic To Save the Wheelchair or Not to Save the Wheelchair; The Story of a House Fire in the forum Adults With Muscular Dystrophy 1 week, 1 day ago
Thank you, Pete! My thoughts exactly about the wheelchair. People always talk about what they would grab in case of a fire or earthquake. But in reality, it’s yourself and your family that’s most important. They did catch the person who did it and he was out on parole so I hope he predict he got quite the punishment.
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Leah Leilani posted a new activity comment 1 week, 1 day ago
Hi there Annette and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.
Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and…[Read more]
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Leah Leilani posted a new activity comment 1 week, 1 day ago
Hi there Edward and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.
Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and…[Read more]
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Leah Leilani replied to the topic Renting Mobility Equipment in the forum Mobility Aids and Medical Equipment 1 week, 1 day ago
I wasn’t even aware you could rent a part for a wheelchair! That’s great to know in case something breaks. $400 is a lot in my opinion though. I’d love to know the reason behind that price point. Perhaps the joystick was difficult for him to acquire or he did purely rip you off. I wouldn’t put it past people these days. Hopefully it can be written…[Read more]
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Leah Leilani replied to the topic Dealing With Cracked or Damaged Sidewalks in the forum Adults With Muscular Dystrophy 1 week, 1 day ago
I always fear something like this happening. Cities never take care of important stuff like this until someone gets hurt. I’m glad you came out okay but I know that your chair probably took a beating. Have you gotten someone to come a fix the damages to your chair? Could the construction company cover the cost to fix your chair?
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Leah Leilani started the topic The Worries and Concerns of Parents With Disabled Children in the forum Muscular Dystrophy Parents and Caregivers 1 week, 2 days ago
Parents of children with disabilities have unique worries that other parents might never consider.
For example, my mother has had to fight tooth and nail multiple times for proper healthcare for me while her other friends with children have never faced such an obstacle. You might wonder if your child will get through cold and flu season…[Read more] -
Leah Leilani started the topic When Fearing Of Missing Out Becomes Temporary Depression in the forum Mental Health and Positivity 2 weeks ago
At this very moment, my boyfriend and his family are visiting the Hawaiian Islands.
I don’t know if you know this about me but I am part Polynesia (Pacific Islander). This means I have Hawaiian blood. It has been my life-long dream to visit Hawaii and my many cousins who reside there. But alas, that kind of travel is out of the question for me…[Read more] -
Leah Leilani started the topic To Save the Wheelchair or Not to Save the Wheelchair; The Story of a House Fire in the forum Adults With Muscular Dystrophy 3 weeks, 3 days ago
Last month, my family and I experienced something that we never imagined would happen to us. Someone deliberately set our house on fire. Everyone is alright, and we were able to put out the fire quickly to save our house, but the emotional toll has been a lot.
Having never thought we would go through a house fire, we were unprepared as we…[Read more] -
Leah Leilani posted a new activity comment 3 weeks, 3 days ago
Hi there Irfan and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.
Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and…[Read more]
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Leah Leilani replied to the topic Surfing with Life Rolls On in the forum Muscular Dystrophy Events And Activities 3 weeks, 3 days ago
I saw you post about this on social media! It’s so awesome that there’s an organization out there helping people experience the joy of surfing! I wish there was something like this offered in my coastal city. How did they accommodate to various disabilities?
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Leah Leilani posted a new activity comment 3 weeks, 3 days ago
Hi there and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.
Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and judgment free…[Read more]
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Leah Leilani posted a new activity comment 3 weeks, 3 days ago
Hi there Deepa and welcome! My name is Leah and I moderate the forums alongside Dani. I have a rare form of MD called Mitochondrial Myopathy that I was diagnosed with at the age of 9.
Here at the MD Forums, we are like a support group-sharing experiences, giving advice and discussing life with MD in our many forum topics. This a safe and…[Read more]
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Leah Leilani replied to the topic Medical Gaslighting in the forum Diagnosis Information and General Questions 3 weeks, 3 days ago
I was just gaslit the other day by my cardiologist. He has tried to get me to take a lower dose of my medication for a while now and I’ve tried but my heart can’t take do it and I’m already on a low dose. He still won’t listen to me so I’m switching cardiologists soon. He’s been wonderful to me in the past but now that my heart is acting heal…[Read more]
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Leah Leilani started the topic The Not-So-Smooth Transition From Childhood to Adulthood With a Disability in the forum Adults With Muscular Dystrophy 1 month, 1 week ago
Was it a difficult transition from being a child with a disability to an adult with a disability? Were you raised on how to approach adulthood as someone with a disability or were you never sure you would reach adulthood and always had someone else caring and advocating for you?
I have found that children with disabilities often have easier…[Read more] -
Leah Leilani started the topic Seasonal Depression in the Summer in the forum Diagnosis Information and General Questions 1 month, 1 week ago
I have heard of people experiencing seasonal depression in the winter months. My guess is that this is due to the snow and cold preventing people from going places and doing the things they would normally do when it’s warmer. But I have the opposite problem.
I tend to get seasonal depression in the warm, summer months. In Southern Ca…[Read more] -
Leah Leilani posted a new activity comment 1 month, 1 week ago
That actually sounds a lot like my mom. She wasn’t showing many symptoms until she had a stroke about ten years ago. She was also recently diagnosed with cardiomyopathy, something that I have had for a while. I’m glad you found a good doctor who took care of you and your husband.
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Leah Leilani posted a new activity comment 1 month, 1 week ago
We’re more than happy to have you here with us on the forum. My mom was diagnosed with the same type as me only a few years ago. It isn’t very common for the carrier parent to start showing symptoms as well although it does happen.
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Sue F and
Leah Leilani are now friends 1 month, 1 week ago - Load More
