sunshine & saltwater

"The cure for anything is saltwater: sweat, tears or the sea." Isak Dinesen

Sitting here in the sunshine with my mother listening to the waves crash, there is no doubt in my mind that this trip has been the best therapy for her yet.

 Thanks to the help of family and friends we have brought my momma back home to Oxnard, California. We are renting a beautiful house right on the beach that my mom grew up on. This house is more beautiful than we could ever imagined. The sand is our front yard, and the entire ocean-side of the house is made of huge sliding glass windows. My mother can literally lay in bed and bask in the sunshine. But most importantly is has been so good for my mother to be so near her family and old friends.

Mom has even had that chance to take a "walk" on the beach. A good friend of my mother's brought over a wagon equipped with huge, sand friendly wheels. Its been so amazing to be able to "walk" on the beach with my mother.

Besides relaxing, and enjoying the beach, we have been trying new things to help my mother. We have reached a point where we are willing to try almost anything. We are still hoping for our miracle, but for now we just want to do what we can to make her more comfortable. 

We took a trip down to Santa Monica to try Qi gong with Master Zhou Ting-Jue, https://www.facebook.com/pages/Master-Zhou-Ting-Jue/145611078842833.  Qi gong is a system of healing and energy medicine from China. It is the art and science of using breathing techniques, gentle movement, and meditation to cleanse, strengthen, and circulate the life energy (qi). Qi gong practice is said to lead to better health and vitality and to a tranquil state of mind. In the past, qigong was also called nei gong (inner work) and dao yin (guiding energy). Mast Zhou generates heat with his hands, and mom said they got so hot it felt as if he was holding a curling iron to her skin. Mom felt relaxed, but drained after her massage. And strangely enough, she felt very hungry afterwards which hasn't happened in months. 

Next we tried acupuncture, which just wiped mom out. We decided that may not be something we want to try again. 

Then met with Dr. Johanna Zee to discuss ways to help mom using a more natural and holistic approach. Loved her! She had a lot of great and relevant information for us. Meeting with her really raised our spirits and we look forward to working with her more very soon. 

My mother's family also brought over a man who heals through prayer. He was a very nice man, and brought a lot of comfort and hope to my mother and her family. He had many, many stories of miracles he brought about, or prayed about in the past. We are still waiting for our miracle, but have not lost hope. 

Our next attempt is going to be through using stem cells. I don't know exactly what that entails at this moment, but I'll be sure to update when I have more information. 

At this point we are in contact with a doctor that Danny's cousin uses to treat her rheumatoid arthritis. Although he has not worked with an ALS patient he has worked with many other neuromuscular diseases, and had success.  Like I said before, I'm not yet up to speed with the exact details, but this Dr. uses stem cells from the patients own body and he believes he can really help my mother.

So next weekend we are heading up to Vegas to give it a try. Please keep my mother is you thoughts during this, as it does have its risks. 

And in other news... let me just give you a quick update, which I know many of you have asked for, about how my mom is doing. 

Well as you probably know if you are reading this, my mom had a PEG, or feeding tube put in about a month ago. The hospital prescribed a formula for us to use but we soon found that this was making her extremely nauseous and gave her horrible headaches. We did our research, talked to a few doctors/nutritionist and decided to blend our own foods for her feedings. As soon as we stop using the formula she instantly felt better. 

So now we blend all of her "meals" and work to keep her as nutritionally balanced as possible. Although she has not gained anymore wait she does feel better and seems to be maintaining her current weight. (about 6 months ago my mother would have killed me for blogging about her weight, haha)

We seem to have not yet found our plateau with this disease. She continues to get weaker and weaker. Now even a simple walk to the bathroom is completely exhausting. Daily tasks are very difficult, she compared picking up her toothbrush to picking up a 10 pound weight. Breathing is becoming much more difficult. And she has gotten much more aquatinted with her Ipad speaking ap, as speaking is increasingly difficult. 

Although we may not be able to bring back the things she misses most: eating, dancing, running, wearing heels, and kissing our cheeks; we hope that with stem cell therapy we can at least help to make a few of life's simple things a little more easy for my mother. 

I'll be sure to update as soon as we know more about the stem cell process. 

Much love from California!!