CMTA VIDEO in English and/y en (video en español)

Getting back to blogging. So many stories to share but for today this will do.

http://www.reviewjournal.com/sports/marathon-perfect-vehicle-spread-uplifting-theme

http://www.youtube.com/watch?v=pi30JIyctKs&sns=em


En Español :  http://youtu.be/X_7vS0fvQgU

Enjoy and let me know what you think. 

"Mom, why does everything bad happens to me?"

" Mom, why does all bad things happen to me?" Words that I will never forget and will forever touch me deep down in my soul. How do you answer that question? How do you tell your 14 year old that the reason why he has reverse scoliosis, and leg length discrepancy is because you passed down a gene that will impact every moment of his life. How do you prepare him and yourself to show him that he is as normal as any kid his age? How do you prepare your child for battle? A battle where the only ones are he and his CMT. Basically a battle with himself. 

Sitting in the car, getting ready to leave the doctor's office. And my son with tears in his eyes asked me that question. I felt and I'm also sure I looked like a bullet train had hit me. Never expecting that in a million years. What felt like a life time to answer him and also trying to take into account that my two other kids where there to listen to my answer. I knew I had to be strong for him and his siblings. I pushed down my tears and pulled up my anger.. My anger toward this disorder. I looked at him directly into his eyes. "Marko, I don't know why. I can't answer why, but I can tell you that you are not alone. I will be there every step of the way. We will do this together!" "You are stronger than you think you are, you where given this challenge for a reason and you will take it and you will run with it." I don't think he had seen such determination on my face and in my eyes before, but he wiped his tears and with a very strong voice he said "Ok Mom, I can do this." I don't know how I did it but I was able to hold myself together until we got home and with the excuse that I needed to get some phone calls done. I locked myself in the bedroom and cried until my tears ran dry. For months I felt so guilty. Blaming myself for passing this to my kids. Yes, my kids. You see 2 out of my 3 kids have CMT1a. It runs on my dad's side of the family. And I jokingly say to people, "Why couldn't I have inherited a million dollars, instead of this gene." But it is what it is. 

As for my kids, I do all that I can to show my kids that OUR limitations are in our heads not our bodies. That it might take us a few extra minutes to do things or that it's ok to ask for help when it is needed. I don't treat my kids like there is something wrong with them, instead I push. I push because life is always pushing us. Because I know what they are capable of and I can see them thriving in a world where people will look at them different, because in my eyes they are perfect just the way they are. And I will continue seeing them as a whole. I see the strength in them and just with any child you feed their dreams and always encourage them to move forward. My kids are teaching me to be a role model. I do the things I do because of them. The real truth is, they are MY heroes. My reason for fighting, for educating and for spreading awareness. 

Allard USA

How I came to find Allard braces.

One day I got a call from Jeff Smith. He is the Southwest District Manager for Allard USA. He said he got the number from the CMTA (Charcot-Marie-Tooth Association). No, They don't share people's private information. You see, my number and email is readily available for anyone. Because I help co-facilitate a support group for the CMTA in Las Vegas, NV. 

Let me go back a little. I have CMT and two out of three of my kids have CMT. Because of the progression of CMT. Most people develop a condition called Foot drop. Which is something that makes it hard to walk normal and of course even run. We tend to pick up our legs at the knee as to avoid tripping on our feet. Because of my foot drop, my neurologist had suggested leg braces and I was fitted for the plastic braces. The plastic braces made it even harder for ME to walk. So after a month, those plastic braces ended up in the closet. I figured, I walked better with out them and ended using ACE wraps for my ankles.  But I would easily tired out after a few minutes of walking. But it was better than the discomfort and pain I got from the plastic AFOs (Ankle foot orthotics). 

Then a year and some months later came the call.  I met with Jeff Smith and I tried the Allard Toe offs in a coffee shop not to far from my house. And I could not stop smiling. I got my prescription for my new braces and there I was two months later walking/running my 1st 5k. Ohhhh, what a feeling!!!! 

I encourage anyone suffering from Foot Drop to look into this braces it will change your life as it has change my life. WWW.ALLARDUSA.COM

Here is a video. To the untrained eye, my gait might look normal but take it to an Orthotists and they can point all the difference. Plus I don't get tire of walking, jogging that easily.  Enjoy.

http://youtu.be/IKQEHmW6fzE 

Gym bunny.... Not yet

Well, hello there. 

Yes, I know it's been a while. Unfortunately I have had some family issues that have needed my attention and With the kids being on summer break, well... I don't get a lot done. At least not the things I should be doing. But, I wouldn't change anything at all. 

Along with family issues, kids and an addition to the family. I am also busy adding other stuff to my daily schedule. Lets just say there is never a dull moment in my life. 

I started strength training and I needed a trainer to show me the ropes. I have to admit that walking into a gym is intimidating for me. It's only been two weeks and still get sweaty palms at the thought of walking into the gym. I'm guessing its all those machines. And people staring at me as I try for 20 minutes to get the hang of it. But I'm committed to working out and increasing my endurance, stamina and motivate others to work out. Even if its walking a mile. Besides who doesn't look cute in work out clothe? I personally like the comfort. 

I have also become An Ambassador for Energybits.com. I have to say, I need all the b12 I can inhale. And it's organic algae. It has spirulina so it's absorbed quicker. I usually take it 15-20 minutes before a work out. And I haven't been needing my afternoon coffee. So you will see a new badge on my blog and if you want to use energy bits... Use the code "embrace" at check out for your 15% off your order. 

It safe for pregnant women and kids too.

   Our new addition

 Working out

 Don't forget to get your 15% discount at check out "embrace"

Excuses

So, this was my spiritual enlightenment from last night.

We tend to excuse people's negative and destructive behaviors. How many times have you heard some one say " Oh, she's unreliable, that's just the way she is.". Or He is so angry and negative all the time. That's how he has been all the time" Fill your blank in there. He/she is so________. (Lazy, controlling, irresponsible, ect.) He/She will never change. That is WHO they are."

When we make excuses and accept others negative behavior, we are not holding them at their highest. Thinking they will never change. We hold them at their lowest because it is easier to excuse them than to have great expectations of them. Why? Because we will be face disappointment. And disappointment hurts.

And as we excuse others negative behavior, we also tend to do it with ourselves. That negative voice in our heads. "I'm too this or too that" And again we don't give ourselves room for growth or change.

Even our society does it with rapist, child molesters, domestic abuse and killers. We excuse their behavior because of a negative pass/childhood. News flash!!!!! A lot of us where raise in dysfunctional homes, Abused in every way thinkable. That doesn't give me or anyone an excuse to do it to others. It's not a free pass.

Even Corporations, businesses politicians and our Government make excuses.

I haven't gotten to an easy fix of the problem, but I'm working on it. My best bet is to call them out on it and yes, it could be done in a loving way. Give ourselves the right to no longer accept OUR excuses for other's negative behavior, specially when "IT" invades OUR boundaries and well being or the well being of those we love. THE VALUE WE PUT ON A PERSON, GREATLY AFFECTS THE WAY THEY VALUE THEMSELVES.

My disability doesn't bother me.

So, yesterday I decided to wear my new Ypsilons braces and with that wear shorts. The weather in Vegas has been in the 80's and my GOD, I would be nuts not take the opportunity to wear shorts. As I was strolling along all day with my braces, I received plenty of stares. Some with a smile and some with an uncomfortable look. So that is why I decided to write this piece. And let people know that it's not polite to stare and/or point.

Why are people so uncomfortable staring at someone with leg braces? Instead, ask questions. Find out what happen and/or why. Questions don't bother me as much as those up and down stares. You are missing out on some great stories. And meeting people like the mom who has MS, or the guy with a missing leg, the kid next door in a wheelchair. You are missing out on finding what makes them strong and what motivates them.Your assumptions, believes, stares, judgements are hurting YOU not me. You are and will miss out on meeting some amazing people. I realize that some of the happiest, genuine people I have had the pleasure to meet and work with are those who are challenge. Why? Because they have learned to love and accept themselves. They have made peace with their past and have embraces whatever it is that makes them different.

My disability doesn't bother me, I'm not sorry. I'm only sorry it bothers you. So please don't tell me that you feel sorry!!! Why are you sorry??? Because my disability is more visible than yours? We all have disabilities. Some are physical, some are mental, some are emotional and some, some are social. What I mean with having a social disability is the problem people have with others. Whether is labeling someone disable and /or putting people in social, ethical, religious categories.

With that said. Enjoy your day and give yourself a chance to be inspired by those who are challenged. You just never know what you will learn. Be open to the opportunity to make a new friend.

Being away

Just wanted to apologize for being away this long. I have been working on a few things that have required my full attention. It seems like things are falling right into place and I am excited about all that is to come.

I will be doing my best to represent everyone that is affected by CMT and will make every effort to share my journey with all of you. I will have to go back and share my events as they have been happening.

As for today, it has been one of those days where the energy has been drained from my body. You know that feeling? It's not muscle aches, just fatigue and no energy to move around and do the everyday things. I had to talk myself into going to pick up my daughter and tap into my reserves.
Seriously, I very much dislike this type of days. As moms we have a billion things to do and sitting around is not one of them. I guess I should embrace days like this because it's the only time I get to sit around.

Enough of my complaining. I hope you are all doing better, since the weather is getting warmer. I know I have enjoyed and am enjoying 70's and 80's and not looking forward to full summer temperatures.

Well, until tomorrow. I will try to gather pictures of my events and will be posting more often.
Thank you for hanging around.

Virginia

My 1st 5k

So This is me. I finally decided to let you see me. But it's not all about how I look but to celebrate that I walked... Yes, walked my first 5k. let me tell you that it was such an amazing experience! I think my high was the moment I walked the finish line. I feel accomplished!
I'm still in awe about it. And very proud of myself.

I couldn't have done it without the support of my friends and the support from my Allards braces.
Yes, I wear braces. I have foot drop and using my braces when I am active is very helpful. I don't feel fatigue and I actually walk faster, longer and not in pain. No sores on my feet because of the structure of the braces.

You can check them out too. Go to www.Allardusa.com

I know that I will be doing more events. Actually, I have signed up for a few this year and I am looking forward to "getting back up" and getting active. Enjoying life and back to enjoying the outdoors.

Here is to many more adventures and to enjoying the simple act of walking.

Trying new things and keep on moving/ Tratando cosas nuevas y seguir moviendo

I kept hearing that yoga is good for Charcot-MarieTooth as it helps in stretching your muscle and helps with balance.

So, I had been searching for the right place. I didn't want to go to a yoga mill. Where you have 50 people in one room and there is no connection/ communication with the instructor. I wanted to be able to tell my instructor what I have and explain my issues and what I feel I need to strengthen. As well as get feed back to what position will help with what and correct me if I am not in the right pose, so I don't end up hurting myself. (that is the last thing I need)

I have to say, I have found the place. My first yoga class was phenomenal and best part is that I enjoyed it and had fun with it. I also made new friends. They even referred me to a person who specializes in stretching. My yoga instructor even gave me some homework to do at home and she is available to call if a question arises. I am looking forward to my next yoga class and getting the relaxation and all the other benefits that come with Yoga. It is one more thing to add to my list. I will eventually get to where I want to be with my yoga journey.

I also do water aerobics and I have to say that it has helped with some of my strength and balance. I do it once a week, it's indoors and the water is so warm. The ladies there too are great. They know about my disease and the swimming instructor works with me. Never pushing me to do something I am uncomfortable or something that is painful. I usually come home ready for a warm shower and my body is so relaxed that I sleep all night.

I still want to try other new things...In time I will call the lady that massages you as she stretches you and I would also want to try Reiki. But for now I will stick with my water aerobics, my yoga, my elliptical, add more walking to my activities and get back to hiking. I'm not letting CMT get the best of me. I will always be out there trying new things. I want my kids to be able to see that you can be active and healthy with this disease. You just have to keep on moving.

Motivation will get you moving, determination will get you there.


Yo seguí oyendo que el yoga es bueno para Charcot-MarieTooth ya que ayuda a estimular el músculo y ayuda con el equilibrio.

Por lo tanto, yo había estado buscando el lugar adecuado. Yo no quería ir a un molino de yoga. Donde tienes a 50 personas en una habitación y no hay conexión / comunicación con el instructor. Yo quería ser capaz de decirle a mi instructor qué tengo y explicar mis problemas y lo que siento que necesito fortalecer. Así como llegar a qué posición ayudará con lo que y corregirme si no estoy en la postura de la derecha, por lo que no termino lastimando a mí mismo. (es lo último que necesito)

Tengo que decir, he encontrado el lugar y el precio no es malo en absoluto. Mi primera clase de yoga fue fenomenal y la mejor parte es que lo disfruté y divertimos con él. También hice nuevos amigos. Incluso me refirieron a una persona que se especializa en estimulación. Mi instructor de yoga incluso me dio algunos deberes para hacer en casa y ella está disponible para llamar si surge una pregunta. Estoy esperando a mi siguiente clase de yoga y conseguir la relajación y todos los otros beneficios que vienen con el Yoga. Era una cosa más para añadir a mi lista. Finalmente voy a llegar a donde yo quiero estar con mi viaje de yoga.

Yo ya hago gimnasia acuática y tengo que decir que ha ayudado con mi fuerza y equilibrio. Lo hago una vez por semana, es en el interior y el agua es tan calientita. Las damas allí son demasiado lindas. Ellos saben de mi enfermedad y el instructor de natación trabaja conmigo. Nunca empujándome a hacer algo que me siento incómoda o algo que es doloroso. Generalmente vengo lista para una ducha caliente y mi cuerpo es tan relajado que duermo toda la noche.

Todavía quiero probar otras cosas nuevas...En vez, llamaré a la señora que da masajes como ella te estira y también me gustaría tratar el Reiki. Pero por ahora voy a seguir con mi gimnasia acuática, mi yoga, mi elíptico, agregar poca más de mis actividades y volver al senderismo. No estoy dejando que CMT obtenga lo mejor de mí. Yo siempre estaré allí probando cosas nuevas. Quiero que mis hijos sean capaces de ver que puede ser activo y saludable con esta enfermedad. Sólo tienes que seguir sucesivamente.

Con la motivación conseguirá movimiento, determinación te llevará allí.

Pacing myself

I realize that I have been trying to do too much in such a short amount of time. And I get frustrated when I can't accomplish my list.
For example.. Today I had to choose between cleaning the house, working out or working on taxes. And then be done by 1 pm to run and pick my daughter up from school to take her to her dental appointment.
But it seem like every day, I have to choose between what I need and want to do. And then there are those days where just going up the stairs it s a challenge.

I can't really explain the fatigue that comes with CMT. But it kind of feels like there is not enough strength on the muscles and a little bit of soreness. And let's not talk about the night time pain and muscle cramps... Which by the way, if its been a horrible night, it will roll to the morning... Waking up with stiff muscles is no fun. I sometimes feel like I'm in a body of an 80 year old. Walking slow, and with little energy.

So, I have decided to look at what I have accomplish during the day, instead of what I was not able to finish. And pacing myself as well as ask for help. It will benefit me and my attitude at the end of the day. After all, I am not super woman. I have to take care of myself and make sure I have enough energy and time to spend with my family and friends.

Support

Well, after what seemed to me to be forever (about 6 days), I am finally feeling better from the the flu.
It seems like a blur but I can say that my hubby did an amazing job taking over and doing the laundry, cooking, cleaning and entertaining a six year old little girl. Oh and let's not forget he also played nurse.

People say good help is hard to find. I say good husbands are too.. I am thankful for mine, everyday. He is my support system. He has been with me through my worse CMT days and when we still didn't know what I had. He held my hand when I had one of two nerve conduction studies and when I ended up in the emergency room a week later from a spinal tab, he was there. One week with headaches so bad I thought my head was being squeezed with an invisible vise. He never let go and I know he never will.

But weather it's a Husband, Mother, Father, Brother, Sister or even a Friend .... We all need people in our lives that love us, accept us and will be there for us. As well as we should be there for others who need our help and support. I encourage you today to look around you and see your support system and thank them for the little things in life that make a huge difference.

Stay healthy

What is Charcot-Marie -Tooth (CMT) you ask? /Qué es Charcot-Marie-Tooth.

Charcot-Marie-Tooth, or CMT, is the most commonly inherited peripheral neuropathy and is found worldwide among all races and ethnic groups. It is named after the three physicians who discovered it in 1886, Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth. It is said that affect 1 in 2500 people.

CMT patients slowly lose normal use of their extremities as nerves degenerate and muscles weaken because the affected nerves no longer stimulate the muscles. Many patients also have some loss of sensory nerve functions.

There is currently no cure but can be managed with physical therapy and like anything else an active life style will be a benefit. It is not fatal, but it has been know to affect the diaphragm muscle.

There is much more information about this disease and it would take me hours to go into details.
I do encourage anyone who is interested in knowing more about this disease to visit www.CMTAUSA.org. You will find a few organizations that are out there that will give you information, help and support.

I found out that I was not alone and neither are you.


Charcot-Marie-Tooth, o CMT, es el más comúnmente enfermedad heredada de la neuropatía periférica y se encuentra en todo el mundo entre todas las razas y grupos étnicos. Se nombra después de los tres médicos que descubrieron en 1886, Jean-Martin Charcot y Pierre Marie Howard Henry Tooth. Se dice que afecta a 1 de cada 2500 personas.

Pacientes CMT pierden lentamente el uso normal de sus extremidades como degenerado de nervios y músculos se debilitan porque los nervios afectados ya no estimulan los músculos. Muchos pacientes tienen también algún tipo de pérdida de las funciones nerviosas sensoriales.

Actualmente no existe cura pero puede manejarse con terapia física y como todo un estilo de vida activa es beneficial. No es fatal, pero ha sido conocer a afectar el músculo diafragma.

Hay mucha más información sobre esta enfermedad y me tomaría horas a entrar en detalles.
Cualquiera que esté interesado en saber más sobre esta enfermedad debe visitar www.CMTAUSA.org. usted encontrará algunas organizaciones que están ahí le dará información, ayuda y apoyo.

Me di cuenta que no estaba sola y ni tu tampoco lo estas..

I'm new at this/ soy nueva a esto

Hello,

My name is Virginia and this is my first posting for my blog.

I have Charcot-Marie-Tooth disease and I wanted a way to share my experience with CMT, my daily living and spread awareness. I hope to reach others who are also struggling with this disease and unite for a common cause.

First, I will start by sharing a news paper article that was done in our local news paper.

http://www.lvrj.com/view/support-group-looks-to-help-those-with-charcot-marie-tooth-disease-
180951171.html?ref=171


Hola,

Mi nombre es Virginia y este es mi primer anuncio para mi blog.

Tengo la enfermedad de Charcot-Marie-Tooth y quería una oportunidad de compartir mi experiencia con CMT, mi vida diaria y difundir el conocimiento. Espero poder llegar a otros que también están luchando con esta enfermedad y unirnos por una causa común.

En primer lugar, voy a empezar por compartir una noticia de papel que hizo en nuestro papel de noticias locales.