Ralph Yaniz
Forum Replies Created
-
Dani, I cannot claim to being a great chef haha, but I can make the basics and like making omelettes or just heating soups etc. Just like to be able to get my pots and pans 🙂
-
We have made some adaptations. Simple things much like you mention. Since I stand and walk with a cane, although in the house I do not use a cane, I actually have moved many pots and pans to upper shelves. My ability to bend over while keeping knees locked and then using biceps is not good. Now I can stand straight and use shoulders. All good!
-
That’s a good thought. Maybe even legal recourses around ADA. It’s hard to make business do the best thing. We need keep battling this. Thanks, Dani!
-
I have to admit this is one of my pet peeves, and not just necessarily in the healthcare arena. I have offered companies and organizations and stadium organizers to let me walk around a venue with them so I can point out simple things they can do to make things so much easier. In fact, during spring training baseball in Arizona, I was able to talk to the person in charge about a very simple spacing change but I could tell he wasn’t listening and just preparing his response about all the great things they are doing. In healthcare especially, hospitals and clinics and other organizations need to allow people with disabilities to be asked to give suggestions, and then they need to follow up on these ideas.
-
At home I am able to get around without any device, but when I go out I always have my cane with me. But what I have found very useful when I have traveled in a place where I may have to walk a great deal, especially around the city where there always pitfalls and curbs and potholes, is to use hiking sticks. I Purchased these years ago and they give me a great amount of stability. I know in the future if I need I can always use a set of crutches, especially to go up stairs. But when I travel I always pack my hiking sticks and they are easy to carry as they telescope down to a short length. I’d love to hear what others do.
-
I think saying I have muscular dystrophy goes deeper and says more. I have said I have a disability if I think the situation is best for that, such as accessing somewhere. But if someone sees me with my cane or walking and asks what up if I say I’m disabled they really haven’t heard anything. I can say I have MD and they can see as I walk or move or just live life what might be Limitations. After all, everyone that says they are disabled probably has very different needs anyway. It’s vague and only experiencing can give the full picture.
-
Dani, Thanks for your question back and for me it was less about having an issue as it was about maintaining bone strength and just general health. I have read many articles about vitamin D and onset of illnesses and between some of the stationary bicycle riding that I do and walking, I feel that keeping my vitamin D level high will maintain strong bones should I fall. I think the level I am currently at tells me things are good!
-
When people ask me, I simply say I have muscular dystrophy. I would not use the term disabled and usually I clarify because even though I say muscular dystrophy people immediately think MS because in they are thinking it is a more normal later in life illness. But I just tell people exactly what I have and I figure by seeing me move and walk they will understand the level of disability because we are all so different anyway.
-
I have LGMD2L. I am also a big proponent of vitamin D and take about 10,000 IU on most days. My levels had been around 40 but my last blood test indicated I was at 67 and my doctor said this was really an optimal level. From everything I have read, I would recommend to everyone that they get their levels taken and if they are under 40 for sure, and maybe even a little higher, to take supplements. I have also read that absorption is improved if you take it with vitamin K and magnesium. Maybe something to research
-
Dani, I think you bring up a very important topic. We are probably all different in terms of how we handle that past. I consider myself fortunate that I was 47 years old before I began to feel some of the initial muscle loss so I really lived 50 years where this was not an issue. Maybe because of that, I look back very positively on athletic accomplishments and my life before muscular dystrophy. I really don’t dwell much on the current situation because I tend to stay very goal focused. I have talked to many people with muscular dystrophy, some with later in life onset, others with a very early onset. I’ve actually had people with early onset say it must be more difficult for me because I had to transition from a more able-bodied life to the current. So I think a lot of it is really our own outlook and mentality and staying positive. Whether you had this from an early age or maybe started later in life.
-
Dani, I think some of the things you mention are the best things we can do to stay strong. While keeping in mind that each muscular dystrophy might be unique, generally speaking it seems that light exercise, such as working out in a pool, stretching, etc., are very helpful in maintaining some strength and balance. I have stopped doing more intense resistance exercises. I have done physical therapy just to learn some new things I can do with bands. All of this is good.
-
I have been fortunate and have not had depression. But as a licensed clinical counselor I did many years and thousands of hours of psychotherapy and I know that the incidence of depression in an older population is much higher than for younger people. Add a disability and you are now dealing with something that happens often. My hope is that individuals facing this can go see someone and get the help they need.
-
I think this is very hard. You can always try a third opinion but then you’re getting into a messy situation and you can’t see three doctors for everything. I think you need to take the info and make your own assessment. If your orthopedist is worried it may weaken your muscles and you know you only where it a minimal amount of time and it makes you feel better… well then you know how to proceed. The equally important issue is also understanding that we all react differently, even to medications. I recently caught the reason my heart was having some skipped beats (PVCs). It was due to a medication I was taking that lowered my heart rate. I figured this out on my own and three cardiologists missed this and were looking at doing some big procedures that turned out to not be needed. We need to be our own best advocates.
-
I think this technology, and others being used out there such as using a virus to insert the correct genetic material into an individual, all have great potential. We need to find a way to fund and speed research. After all, this technology, if successful and perfected, will help so many rare illnesses. This is the future!
-
This is a tough topic. People need be considerate of others. First, no one should be parking in these spots without placard and proper identification. Also, because you have a placard doesn’t mean you can pull into spot and have someone get out while you wait. Also, my opinion, being considerate means assessing your own needs and using what’s needed. I have a disabled placard. I don’t always use it. I am not in a wheelchair and I mostly need this accommodation for winter snow and ice season in Chicago or when I need a curb-less entry and there are plenty of spaces available for others with disability. If I see spaces are limited and regular parking is not to far, I often park further away and make sure I walk to the spot of the disabled parking space where I know there is curb-less entry.
-
The question you mention about driving makes me laugh a bit because I’ve had the same question. And I’ve had other types of questions that, depending on the issue, either have made me angry or really have not had an effect on me. The driving question has never angered me and I respond clearly with why I can still able to drive as safely and as well as I always have. But I will tell you this, the one thing that really is a pet peeve for me is when you meet someone and you tell them your diagnosis, or what you have, or your symptoms, and this person, and keep in mind this is a lay person with no medical training and no knowledge about your illness who proceeds to tell you that “ if you just go to such and such country that there is a person there who is curing people. Or that if you just start taking amino acids you’ll feel better. These responses are frustrating!
-
I think this post is very important because, from my perspective, there are two types of inspiration. One is this type of story where the main character, so to speak, is the person who is inspired by somebody with a disability. At least from my perspective, this is not what would inspire me as the reader or viewer. I’m glad the person was inspired enough to take action and do some good in society, but I think the stories that really inspire are about the people that have overcome challenges or disabilities to accomplish something that was not easily done. And I think society needs to really come to terms with what kind of world we want to live in. The number of people without disabilities or incurable or untreatable rare illnesses vastly exceeds the number of people who need something like a wheelchair or something other assistive technology or treatment to help them function at a higher level. We need to think about how we make that happen for everyone.
-
I have Limb Girdle Muscular Dystrophy 2L. I did try edibles a couple of times. While I normally do not have pain, I thought it was worth a try because I have really tried everything that might be able to benefit me. I was hoping the marijuana might allow me to rest better and maybe also have some anti-inflammatory effect But the reality is that I do not think it did anything for me and, in fact, in feeling a little “high” I probably put myself at risk for a fall. I had to actually sit for a couple of hours to feel study enough. So at this point, I don’t think it’ll be something I will add to the numerous other things I take.
-
Loved this piece by Leah. I travel a great deal and all the things she mentioned are important, and help so much.
When end I travel long distances by car, as I recently did from Chicago to Miami, I stop every time my gas tank is at half. This gives me a chance to fill the tank and also stretch and walk a few minutes.
On airplanes, I check my suitcase, a mid-size case that I always use even if the trip is just a couple days I put everything in this case and just care on a small backpack. My checked bag also includes hiking sticks in case they are needed.
Travel can be tricky and I’ll have more things to add in the future
-
This is such an important question. I have always been able to get myself up but I think I am at the point now where if I don’t have some sort of a prop, a chair or step of something higher to push myself off of, I may not be able to. I don’t want to try because I’ll just hurt myself. But I always worry if and when it happens and I don’t have something to use, how I’ll manage. If I fall at home I can get myself to something. But on the streets I worry. Ugh. A human lift may also be in the future but for now I’m hoping that the development of the electric powered leg braces might be an answer. The only problem is that they will be expensive. See example
https://m.youtube.com/watch?v=7amrN558eao&feature=youtu.be
-
I think there definitely are people that I see on social media that inspire me. And maybe as this forum grows we might all share some of those contacts. But I think there is something missing here. Your question, Leah, is a good one. But I think in our society it should be broader and isn’t, because we don’t have media stars with disabilities at the level we should. There has been recent debate again about why Hollywood might choose an able bodied actor to play a role in, say, a wheelchair. Why not have a great actor who is truly in a wheelchair. I am working with some people to see if we can’t make that happen. True diversity, defined broadly, in our stars and role models. What do people think?
-
Dani, I saw your response in my email notification, but not seeing here yet. But that’s a good point. It helps to have a chair or wall or something to hold onto as you are getting up. Once I’m part way up, for me anyway, my abductors are strong enough to allow me to shift hands from chair or seat or toilet I’m on to a higher chair or object. Everyone will be different depending on strength of those abductors but for some people this may work. And you’ll learn where to put band and how much leeway it can have so that it’s best for you.
-
I think the biggest thing that Dani and Leah mention is communication. I am a licensed clinical counselor and have done many thousands of hours of marital counseling and couples counseling and I can tell you even in relationships where there is not a disability, people often aren’t talking about what pleases them or asking their partner what pleases them. I can’t imagine too many physical disabilities where are you cannot please your partner some way if communication is open about what is pleasurable. And remember, that communication has to be a two-way street. We always remind people in counseling that your partner cannot read your mind and you have to talk everything out
-
Quest is put out by MDA (I was on MDAs first National Community Advisory Committee) and has great information on many different things. I have used it in the past to find providers, find and learn about clinical trials, and just read informative articles regarding assistive technology and new things happening in the field. I think everyone with muscular dystrophy should be reading through every issue of this magazine because you will definitely learn some important things.