Ralph Yaniz
Forum Replies Created
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Great tips, Kevin. My column tomorrow will focus on a similar bent and look at living, learning, thriving when we need it most. This is a great time to stay safe and to do some reflection on life. I hope everyone can use this opportunity to grow.
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Just my personal opinion but I think we are on the cusp of major breakthroughs in genetic science. Whether it’s our knowledge of gene therapy and how to achieve it, or technologies like CRSPR, we will see some big things ahead.
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This was fabulous. I saw it and loved it. In some of my columns I’ve talked about advocacy and effecting change in society. Positive social change. These great group of individuals with disabilities did that. We can learn a lot!
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Thanks for your reply. It sounds like things are going very well for you with your latest choice. I think what you mention is key, we are all different. For me, I am still able to go out and walk, using my hiking poles, and maybe walk up to a mile depending on the terrain. I hope this chair I just purchased works for me for a few years. I will probably use it at special events at public venues or where I can’t find appropriate seating. And what I learned in Arizona is that it is great in a museum where I can take my time going through the exhibits. But there is no doubt that in the future I will look at upgrades and your information is great for me and many others. Thank you!
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I like this. I’ve written a few columns also on goal setting and being realistic. We can all have great success in improving our day to day lives. Appreciate this.
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Haha 💫
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I’ve already alerted Leah I’m definitely a columnist but not a communist haha. Hope you all can read column. Would love feedback, as always.
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Leah, I agree with you and I don’t think we need to wait for more cases to come forward. We need lawyers who can start the process now and once it is moving forward we can advertise it and trust me more people will come out. And it’s not just Uber trust me.
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I think the reality is that a guide dog needs to be able to access everywhere their own accesses. Fully. Completely. Always. How do we handle this? We need lawyers willing to work in this system with real power for those of us who need. Recently I spoke with a disabled lawyer who made promises and was ready to help with some battles and then disappeared. That’s crap. All of us need a network that is willing to takes cases like this with Uber to the top and make changes in society for all of us.
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I actually had it wrong on Twitter where I said March 2. But my column on March 12 will focus on this. I wrote a column already some months back on my first wheelchair ride. This new piece will go deeper.
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My husband, who has LGMD2L, is a tall guy and was still very mobile when he sought an answer for his weakness and falling episodes. A Top Neurologist at a premiere Cicago hospital asked my husband if he thought “his wife was poisoning him”?! He was implying my husband thought he was paranoid. Luckily, after being accepted at the MDA clinic in Chicago, we got answers. Now My husband keeps in touch with Specialists on LGMD @L in Colorado, North Carolina, Chicago and Belgium! bless the internet!
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Many people have fallen into the “we can’t pay for it” hole. That’s a shame. We are currently paying over $4 Trillion for healthcare in this country. I have written columns about having to pay a medical system $700 just to use a room for 15 mins to get a cortisone shot. I have also had letters printed to the editor of major newspapers citing the BILLIONS of dollars in profits that private health insurance providers make. You’re really going to tell me we can’t pay for healthcare for all? Or that this would mean we can’t pay for people on disability or with special needs? By the way, personal income totals in the US are reaching $17.5 Trillion. I have been able to sit and in an hour come up with a healthcare payments system where everyone pays based on income and where we can come up with the $4+ Trillion we need to cover everyone fully. And imagine if we were able to clamp down on excessive industry profits and ridiculous costs.
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I’ve done these the last few years and usually it’s me and my wife walking for the “New Normal.” We do part of the walk and make a donation. I haven’t taken it bigger yet because I am focused on raising money for LGMD2L Foundation specifically. 😉
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Leah, great!
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Leah, I should be there again this year. Let’s find time to connect.
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Other than my annual physical, the only time I have had to get any medical treatment over the last few years is after a fall. My most recent fall about six months ago led to a severely torn rotator cuff in my right shoulder. I am still healing this and may be about 85% at this point. I know there will be other falls in the future and it’s hard to prepare yourself because as we know, they come on suddenly and unexpectedly.
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I’ll just give my opinion – it’s not ok for drug prices to go up more than the rate of inflation when so many people struggle to get their necessary medicines.
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As you know these issues are my pet peeve. See my latest column;
https://musculardystrophynews.com/2020/01/16/society-inclusion-advocacy-education-moving-forward/
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I’ve done this twice for two studies I’m involved in. I’ll have to do both of these again in March and May. I do carry my hiking pole with me and use it for turns in hallway where I have to turn around. I assume there will be more of these in my future 😊🙏
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That’s how it is when it snows ugh. Grounded for a couple days. I have a couple of places I’ve learned of where I can park underground and get to. It’s important to get out.
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I have thought about getting into people’s homes often. I don’t use a wheelchair but I can no longer step up easily, even on relatively short steps. In fact, even street curbs are hard. I can easily fall. I avoid going to people’s homes. Even when I visit my son in Wisconsin we stay out of his house. My brother is doing Thanksgiving this year. At first I said I’m not going. Then we figured out that as long as there’s no snow I can go around the back and it’s step less. My sisters where we do Christmas is a very low step. Each year it gets harder and I know one year I’m going to fall. I wish homes were built differently but so many, even those few that don’t have steps, have a huge stoop into the house.
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I think it’s just a crazy day that I’ve never been a part of 😂
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I use a heating blanket. I turn it on before bedtime. Then after I read and I’m finally ready to sleep I turn it off. I’m ok once I’m warm and under my three blankets. 🙂
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Dani, I think it’s a fairly healthy snack too 🙂