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.