Leah Leilani
Forum Replies Created
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Unfortunately he may not be able to go on the rides. If you used a neck brace he may be able to go on some calmer rides like Pirates of the Caribbean. The good thing about Disneyland is that there’s always entertainment and good food. The parades are very fun too. There’s almost always something to see and do.
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I think, as women, it is still expected of us to give birth to our children. It’s ingrained in us to create a family and when that dream is suddenly paused or interrupted it can very disappointing. I’ve always known I wouldn’t be able to have kids because of my fatigue and it’s something I’ve come to terms with over the course of many years. Because my disease is invisible outsiders (like my boyfriends parents) assume I can still have kids.
Kudos to you for getting a hysterectomy. I know Endometriosis can be a painful disease. I hope it cured your symptoms. I have considered getting one because a) periods are a hospital sentence for me and b) I have no need for the organs. But it’s a big surgery and I don’t do well under anesthesia.
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That’s awesome that you found a way to still be immersed in sports. Life with Muscular Dystrophy is all about adapting and finding an alternative way to do the things we love!
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I guess skinny jeans would not be a staple item in your wardrobe. I wonder what people my age do about this problem. Can leg braces be worn over clothing? Would denim leggings be better since they’re a thinner material?
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Yes, personality is a huge factor and can make or break your relationship with your dog. My family and I just adopted a puppy and if we hadn’t gone to visit the litter we could’ve chosen a dog with the wrong personality.
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It’s a free app called Insight Timer. You can choose a guided meditation from hundreds of audio playlists or meditate on your own with a timer in the app. There’s also a community chat section to connect to other people using the app. Sort of like a support group.
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Crutches have definitely been put on the back burner in terms of mobility aid advancements. This new style looks so much comfortable and supportive. For some, it could minimize shoulder and neck soreness as well. Not all mobility aids are height inclusive and the fact that these can be adjusted for very short to very tall people is great. Like you said Ralph, variety is so important when it comes to mobility aids since everyone has different needs and body types.
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I’m so glad to hear that your cholesterol and A1C have improved. I too used to have a very active lifestyle and have to maintain my weight by eating less. It can be a real struggle sometimes.
I hope you are able to reach your goal of 600 miles but if not don’t be hard on yourself. It sounds like you take your health seriously and that is a good thing.
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Thank you Ralph for all you are doing for the MD community. Even just advocating for yourself and educating other can help other people down the line. We, as people with MD have a power to change the way we are viewed and make advancements in the medical field.
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It sounds like you found a comfortable pillow Barbara! Congrats! I can be a long and frustrating quest for sure. I too am short (4 ft 8 inches) and now what it’s like to live in a world that’s doesn’t cater to your size.
I like the idea of a customized pillow where you can choose the filling but if you’ve already found the one that works then I suggest sticking with that one. Including links in your replies and posts is very helpful for other members.
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My mom loves to cook but since she now has Mito she has had to adjust her amount of time in the kitchen. I wrote an article all about it.
There is a snippet in this article from Quest magazine about a woman who lives on her own. On occasion she relies on her neighbor to help her with small tasks and afterwards bakes him a pie to says thank you.
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I never really thought about it that way but you’re absolutely right. I realize now that I do the same thing. Saying that you’re disabled when someone asks you specifically about your circumstance isn’t really an answer and can spark a whole new set of questions.
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It is great when a product that is not designed for the disabled can help us so much. Mobility aids like crutches and walkers that don’t fold up are a pain to travel with so I can see why you would choose the hiking sticks. Plus, I’m sure you were able to avoid a disability tax since the hiking sticks aren’t medical equipment.
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I like your method of explaining your life with MD and how individual it is. The obstacles and limitations we all experience are different depending on our lifestyles. Like you, I don’t mind explaining my life with MD to others that are curious and respectful.
Why do you think you don’t prefer the term “disabled.” Do you feel like you’re not disabled enough or that the word doesn’t portray your life with MD accurately?
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Amine,
I think it’s easy for people to get lost in a romantic relationship and lose contact with their friends, although that isn’t an excuse to do so. Shooting out an occasional text to them to say hi and catch up may be the push they need to remind them of your presence in their life and may turn out to be with it.
Most of my friends are in college and we don’t get to talk as much as we used to. I do feel a disconnect because they’re doing things I’m not. But I think it’s normal to go through these quiet times with friends and then when your lives are more settled, you can then reconnect and have more time to spend with each other.
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Tracy, what’s your dogs name and breed? One thing that deters me from getting a service dog is the fact that most of the service dog breeds have dander. Andre’s breed is hypoallergenic so his hair doesn’t affect my allergies.
I don’t think it’ll be too hard to get your dog acquainted to a power wheelchair. When I first got Andre is was still in a Manuel chair and used it only outside of the house. Andre had no problem adapting to the power chair and using it in my house.
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This was a great article! I liked how it brought attention to many aspects of dating with a disability and being in relationship with someone with a disability. Hopefully, this article reaches able-bodies folks and give them a new perspective.
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Garry, these are some great tips that you mentioned. With my form of Muscular Dystrophy I am easily exhausted so pacing myself and resting is a constant thing for me. If I feel weaker than usual, eating and drinking can greatly help. I drink Gatorade daily because of the electrolytes. When I get dehydrated I can literally feel my cells absorbing the electrolytes.
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Tracy, I’m so glad that you found a medication that has minimized your fatigue. I’ll have to ask my doctor about this medication. Have you experienced any side effects from the drug?
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I agree that there needs to be accurate representation of disabled people on the big screens. I find it very heart warming when an actor is truly disabled in a movie or television show. I’m excited to go to the Los Angeles Abilities Expo and maybe meet Micah Fowler from the show Speechless!
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Yeah, it really does depend on the timing and situation. There was once a women at my church who was offering some sort of supplement. She was very persistent and wouldn’t really take no for an answer. This bothered me because I just wanted to attend the service and socialize with the other member at church. Plus, I know my own body and I have tried many supplements and diets that haven’t made any difference in my health. I just didn’t feel like like it was appropriate for her to intervene when she knew nothing about me or my disease.
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Thank you Renjith for making me aware of this brand! It’s awesome that adaptive clothing is becoming mainstream and more easily available to the public!
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Thank you Ralph for reading my article. I think we all struggle with pacing ourselves sometimes. I am great full though to be able to be open about these struggles and hopefully help others going through the same things.
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I agree with Dani that communication is key during intimacy. Pleasuring my boyfriend is difficult too seeing as though I don’t have the strength to hold myself up and find a comfortable position. In this situation I think toys and other devices can help tremendously. I actually just read an article about toys for people with disabilities.