Friday, November 1, 2013

Life challenge with or without ALS

Well today is already November and we just began our journey across America for ALS for the second year. If you would have told me 5years ago I would be doing this I probably thought you were crazy. This disease has allowed me to share and be able to help so many people out. And yet as much as each one of us dealing with this disease fights and continue to raise ALS Awareness you would think that we would have a cure. Unfortunately we don't and further more we don't even have effective treatment. We could sit back and accept that and just wait to die. But for many of us that isn't and will never be an option. Since being diagnosed with this disease, I have learned to accept that I will never walk again, I will never be able to sing like I use too and I will never be able to just pick up my grand children to play with them or even give them squeeze tight hugs. But what I will never accept is that this disease continues to destroy many other lives from both the very young to the old. Remember this disease doesn't discriminate. This disease shows absolutely no mercy. And I can't and won't allow myself to let this disease get its hands on anyone else without a fight. Would you allow yourself to let someone hurt anyone in your family? Well this disease is very much like that. I need to protect my family from this. That is why I do what I do and why I go to great lengths for attention. It isn't because I want attention. Its because this disease needs attention. We need not just a cure. We need something so this disease can never take another person's life. We become a prisoner in our very own body. Besides my family, this has become my passion and my purpose in life. I breathe this finding effective treatment and a cure 24/7. Many of you who knows me understand why. But who really understands is my husband. He not only has to deal with me but he has suffered greatly even more so than me. Dealing with ALS is not easy and then you add in children regardless of their ages and the day to day stress and lets not forget the care giving he deals with solely on his own. Many of you are probably saying well you must be doing well because you travel so much. Here is the deal, one I feel better traveling than I do just sitting at home. Two - Soon I won't be able to travel and could be bed ridden..Three - This is how We are dealing with this disease. Many say its expensive and many couldn't do this. Well bottom line is if you were dying would you just sit and do nothing or would you want to get out and live life? I don't apologize for being blunt or matter of fact but anyone who wants to complain about me can really just kiss MY ASS. I have no time for negativity or for the woes me attitude. John and I have dealt with this disease almost 5 years and we haven't yet hit the hardest part. But when we do I can guarantee one thing, we will get through it. Because we have faith, hope and tons of love. Remember no one said life is easy. It is what you make it and I'm living life strong and refuse to give up. Do me a favor... Some time when you're alone think about your life and see what you want to do to make life happier for you. What would you change and what you can do to help others. I guarantee you will feel better. Don't take the easy way out. Life is a challenge so live each and every day strong and never give up.


  1. As a person with ALS you are showing yourself to be brave and in full command of your life. Congratulations.
    Nan Boudreau
    Richard's mom

  2. Passed your RV on the road tonight - Highway 46 east of Paso Robles, CA. My grandfather had ALS. Wishing you fair winds and new friends on your journey. Where are you headed next?

  3. Could you do a post about life in the RV? Like what kind it is; how you get in and out; sleeping; showering; bathroom breaks; etc. And maybe some pics? Also, have fun!

  4. Robin, you are so strong and brave to go through this! Thank you for sharing your experiences with us through this blog. What type of treatments are your receiving now and how are they working for you? Have you tried acupuncture and medical nutrition? If you are interested in medical nutrition, then I have a recorded webinar I can send you. Please e-mail me at if you are interested. Best wishes with everything!

  5. You seem like a strong-spirited person.

    I recently published my article on newly researched natural medicinal plants and their potential for reversing of ALS, Alzheimer's and other neurodegenerative diseases. It can be found at:

    It is the culmination of several years work, having studied ethnobotanical medicine in the search for something viable. Hopefully, you will find it an important topic.

    I wish you the best of luck, and that you share this information, should you find it interesting.

  6. Contrary to what most people have been told, there are a few of people who have healed from ALS. There stories can be found at and should be shared with others who have been diagnosed with ALS, so they too can have a chance to heal their bodies of this potentially deadly disease. Please help raise awareness by visiting and sharing the news about these amazing individuals with others in your social media networks and email contacts. Please help us help others around the world who have been diagnosed with ALS. Your help is needed to spread the word. Thank You