Danielle "Dani" Liptak
Forum Replies Created
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100 percent agree with you, Ralph! I wonder if it would require going to a law maker? Like US Senator Tammy Duckworth, who fights for people with disabilities or the health department?
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Personally for me, I was most reluctant about the power chair and it has been my most precious device, it has really given me freedom like I haven’t had in years.
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During the pre-employment process, like a job interview, it is illegal for an employer to ask you if you are disabled or ask about the nature or severity of your disability. An employer can ask if you can perform the duties of the job with or without reasonable accommodation. Obviously if you roll up in a wheelchair they can figure out that you are disabled, but you do still have rights, which I think is good, I like how you refocused back to your resume and skills when they tried to inquire about disability.
You have had a wide range of jobs! That is great! Were you at different stages of disability during these jobs? Were the more physical ones that you did with accommodations?
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It was really hurtful at first, then I became angry. He has no idea what he is talking about. He also discussed the abuse in this interabled couples relationship like somehow being disabled caused him to be physically and emotionally abusive. Those are two totally separate issues, not all disabled people abuse their partners or vice versa. Unfortunately he has a large following and those people take the things he says seriously. If we can’t be seen as deserving of love because we require care then what is love? Also the poll he did on social media was ridiculous. From 58% of people saying they would date someone with a disability, down to 28% because their partner would need 24/7 care? How many of those people are married, in a relationship, or single? They are saying that if something happened to their abled bodied partner today that caused them to need care or they became disabled they would leave them?! It really was not good for our community and he really needs to just stop. I know he is a “doctor” but to me he is not deserving of the title, do no harm is their Hippocratic oath and he certainly didn’t follow it this time!
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This is really important! Especially for insurance purposes and as a society knowing how many people have the disease. The article also mentioned that it gives the patient an identity, I never looked at the ICD-10 codes like that and I think it is important in this case to be recognized, especially for medical purposes!
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I guess this depends on how I am feeling that day. I usually try to be polite but we all have our days when someone says something that rubs us the wrong way or I don’t have time for it nor do I care to hear it.
I appreciate the gesture but I also believe there are certain places and times to talk to people about issues pertaining to muscular dystrophy and treatments (and curing me in the WalMart check out isle is not one of them) Now if I am standing in line and the person behind me says they are a neurologist and we have a discussion that is fine, but in that case I am more apt to listen because they are a trained medical professional. Again, my mood, the time and place all factor in to my interest in listening to someones advice on treatment options.
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I really think you have to be comfortable with enough with your partner and practice and talk about what works and what doesn’t. You might have to spend some money, get some devices, maybe even incorporate someone else, who knows. But really it is different for everyone. What works for one might not work for another. Do you think it is not pleasing or has someone told you that it is not pleasing?
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Hi Syed, where are you from? Maybe we can start by finding you someone in your area that you can meet and discuss what you want. We are here to help!
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Robert, do you consider the reason behind why they find you inspiring bothersome? I have always had my issues with someone finding me inspiring or brave, that is another term that makes me cringe a little. Only because what else was I supposed to do when my disability began affecting me? Give up? No, I adapted like any person would. I would never tell someone off for saying I inspire them. I am always polite and try to thank them and bring as much awareness to muscular dystrophy as possible. I do try and use my social media as a way to express to society what bothers me or what “inspires me” but when I interact face to face with people who don’t have a disability I try to be kind and understanding.
Have you heard of the term “inspiration porn”?
Today, inspiration porn is more likely to refer to viral videos, that showcase a non-disabled person doing something nice for a disabled person.
In the past,“inspiration porn is an image of a person with a disability, often a kid, doing something completely ordinary–like playing, or talking, or running–carrying a caption like ‘your excuse is invalid!’, it is there so that non-disabled people can put their worries into perspective. It’s there so that non-disabled people can look at us and think ‘Well, it could be worse, I could be that person.’ ”
What do you think of that side of the discussion?
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That makes sense. I find if I eat right (for me that means low carb, low sugar, high fiber), take my daily vitamin (chewable, haha), and drink as much water as I can (which is not enough because I avoid public restrooms due to personal inaccessibility) I feel much better. Now if I stop eating right and drinking water I notice a negative change in my body and mental health, but not really when I stop the vitamins. I think that is only because I get enough vitamins from the food and my environment.
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I agree that vitamins and supplements can affect people differently, especially since we are so different!
How have you found them useful, Ralph? Do you notice more mobility or feel physically better when you take them? Have you ever stopped taking them for a time to see if they had any affect on you?
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Gord, do you mind if people come up to pet your service dog? Do you have something on it saying “service dog” “do not pet”?
Personally, I think service dogs should be off limits unless specifically stated by the owner, even then I feel uncomfortable because they are doing a job and should not be distracted. They are so important that they should be seen as more than just a dog. (That might be a little much for some). I think if someone is allowed to pet a service dog then they might assume they can go up to any service animal, which could be really bad for the owner if that dog gets distracted. Have you had any issues? Some people can get very upset if you tell them no!
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That would be so helpful to have a dog to pick up items I have dropped. I have been trying to find a retractable or folding claw to help me pick up things that I drop when I’m outside of my home, that is not bulky and can fit in my wheelchair or bag.
Inside the home I have claws/grabbers in a couple rooms. The only things is when the grabber falls on the floor I can’t get it back up lol
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You most certainly not alone, Craig! I have not had a significant other tell me that they can’t be with me because of my disability, but I did have a roommate decide that living with me was too hard for her, that I required more help. I agreed, it also was not her responsibility, but it still hurt my feelings. At the time I didn’t know it was also a blessing in disguise. I did not actually like living with her, I appreciated my independence and now I know what I want in a roommate.
It is hard work keeping your guard up all the time, not everyone thinks like you ex, I understand holding yourself back from the possibility of love is safe yes, but I can guarantee when looking back you will regret not trying! When you are truly ready you will get back out there, until then, know you have survived your hardest days because you are strong!
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Tracy, when you say autoimmune related, what does that mean? How does that affect your MD, if you don’t mind sharing?
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Hi Faye! When you were looking for a trainer, what were some things that you wanted? How did you find them and once you did what did you talk about before starting your work out? Did they have prior knowledge of your MD?
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Hi Tracy, Methotrexate, you said it helps with fatigue? Have you noticed any side effects?
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Being bullied are some of the worst memories of my life, I occasionally think about it but not like I used to. I know it has shaped my behavior to try and avoid situations where I could be bullied and I find myself uncomfortable with people who are not afraid or ashamed like I was. Slowly I am trying to relearn how to think about situations and not care what people think, and that most of the time the bullies are the ones who are “weaker” or there is a reason for their behavior. Those who are hurt end up hurting others. What would you say if you could go back and talk to a younger version of yourself, knowing what you do now?
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What an awesome article! Thanks for sharing. The line ““Most people stress about what to wear on a date. I have to focus on if I can even get into the building,” really struck a chord with me. That is how I feel.
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Hey Garry, I agree the price can be a lot! I wonder if insurance would cover the price?
I did not know the Apple watch had the best fall detection sensor, that is so cool! I personally use a Samsung phone and I love it, so I hoping that Samsung will come out with something similar.
Right now I use a guardian, if I fall I push the button on my necklace and it calls someone to help me. It is a monthly payment but maybe it would be better to get a device that recognizes when I say it’s name instead of needing to physically push a button, in case I fall and cannot move, I can still use my voice hopefully.
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Leah, I agree with you about the feeling of the electrolytes replenishing your system, it is a rush sometimes, haha! They should have a commercial for muscular dystrophy and Gatorade, how much we love it! I enjoy the orange Gatorade myself!
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Garry, I appreciate your response! I agree about getting adequate rest and taking breaks. Breathing is very important as well, getting as much oxygen into our body and muscles! Do you take naps? Sometimes I can sleep too much and still feel tired. Has that ever happened to you?
One thing I noticed is that I am more alert if I don’t eat too much early on in the day, personally for me I have to watch my glucose. I try to eat healthy, with low carb, high protein, and very low sugar but of course I am not always eating healthy! If I eat too many carbs or sugar then I find I need a nap during the day. I also think drinking a lot of water can make us feel more alert, kind of like an internal shower for our bodies! Haha