Month: July 2011

Today we went back to Dr. Parks (Chiropractor) and found out that we didn’t get the loan financing that we needed to proceed with the decompression treatments. So I guess right now we are at a stand still. We need to find a way to get the money we need for this treatment as for the moment it seems like the only thing that looks like it can help him. At least for now the adjustments he is getting are helping a bit so it isn’t all lost.

We took with us today the EMG report from UC Davis. This is the test that uses electrical current to test the neuro pathways etc. He is looking this over to see what he thinks. It is interesting to see that the neurologist wrote a very non committal report. While he said that the findings suggest ALS he also said that his cervical, lumbar and cranial issues couldn’t be overlooked. Yet he failed to mention these things to us. He said that Scott’s spine was normal and it is clear that this is far from the case. So we move forward trying to put the pieces together from this crazy puzzle.

It is hard to believe that the summer is half over. This will be the first summer I can remember that we are not going camping. Maybe we will squeeze in a trip before the summer is over. I feel like our whole world has been turned upside down. We are having a pretty good summer though in a lot of ways. It has been nice to have Scott home. The boys and him have been going to the pool and the library and different things together and they love getting to spend time with him.

I have been getting lots of time in the garden. I am still a bit off on my sleep schedule and need to re arrange things so that I can get out more for my runs. I don’t want to slip backwards after all the work I did last year getting to where I am. It would probably be a good idea to register for a race just to give me something to work towards. Part of me would rather just sleep in, to be honest.

I met a lady today whose daughter was dying of a rare form of cancer. The story she told me was just really sad, I guess it isn’t a type of cancer that responds to chemotherapy or radiation or any of the normal drugs they treat cancer with. It just reinforced in me that feeling that each day is just so important to love the people in your life and live each day to the fullest. Being present to today and now is so important. No one knows what will happen tomorrow. It is a good lesson for everyone.

Her story really struck me because I guess her daughter had had a hysterectomy in 2009 for fibroids and then found out in May this year that she had these tumors and this rare form of cancer. Then found out just recently when another doctor pulled her records that she had had this cancer when she had the hysterectomy but that the doctors didn’t tell her and though the records say that they recommended further treatment she was never told. I just have such a hard time with how the medical facilities do not connect the dots. The doctors we have dealt with have not only neglected to look at medical history but failed to read the results of tests and then they have gone on to jump to conclusions without further looking into things that need to be looked into. How many people out there are going through similar things?

She told me about a lady that had MS who was confined to a wheel chair. This lady had heard that a doctor in Poland was curing people with MS and so she went there even though she didn’t speak the language and just had full trust of the doctors to help her. I guess they opened up some neuro passageway or something in her neck and she walked out of the clinic. Why does the US run the way it does in terms of health care? It is all about the pharmacies. It needs to change.

Again just feeling so much gratitude for all the love that keeps pouring in. I could not do this without all the support from everyone and it comes in so many different forms and I recognize them all. Much love to all of you who show up and love us. Namaste

I tried to blog the other day but failed to save and my server disconnected, so I learned my lesson and here I go!

We went back to the chiropractor today and went over the MRI of Scott’s neck, you know the one that the neurologist said was “normal”. It was clear to see that the bulge in his disk is putting a dent in his spinal cord and it can explain a lot of what is going on with his symptoms. The chiropractor has a decompression machine that he would like to use to help him. It entails him going in 5 days a week for 6 weeks and he will do the machine for 30 minutes, get physical therapy and massage. He feels that the disc still has a good chance to heal if we go this route. It is going to cost us $4600. It is still unclear how we can pay for this given our current financial situation. They have financing that is available through Chase that can help, however I am not sure if our credit will be okay to get us approved for it. It is a 0% interest line of credit they offer for medical stuff. If not that then we hope they will let us do a lien on the settlement that we are hoping to get from the accident. I know in my heart that the chiropractor has already begun to help and I feel this treatment would really help heal his neck the rest of the way. Please send prayers that we get approved for the financing! Keep fingers crossed!

I do know that Angels walk among us. Today we went to pay for his office visit and I was going to have to have them hold my check because work was slow this week. When we arrived at the front desk the girl just gave me the biggest smile and told me that someone had already paid for our visit today and we were all done! I just about cried. I just wish I knew who was responsible for doing this. She wouldn’t tell me who. Just the nicest thing to do. If you are reading my blog, thank you and lots and lots of love, it means so much right now! 🙂

It has been a better week. Scott seems to be feeling pretty well and he looks good. He stands straighter and has only had 2 choking episodes in the past couple of weeks since seeing the chiropractor. This is just such a huge relief. It is very hard to see him struggle. It is nice to see him working on the lamp he is making me and he has begun drawings for a friend who wants a lamp done as well. It is good to see him happy doing what he loves most.

I have been working on finding balance. Slowly I am beginning my studies to become certified in EDS. It isn’t easy to find time for this. I was staying up later blogging and reading and then I was finding myself sleeping late and missing my runs. This isn’t going to work for the long run so instead today I got up early and read a bit after I went for a run. The kids have been pretty good about giving me a little space today, that has been good. I feel like I have so much that I have to do. I find peace when I run and when I go to a yoga class I find that I can center and breathe. I am not sure how it will all work out but right now everything is good and I’m staying with that.

So, there is this thing called EDS Electro Dermal Scanning. This is a device that is used to measure the flow of energy in the meridians of the body. If you know about acupuncture and Chinese medicine then you will know that the meridians are the pathways in which energy flows through the body. In Chinese medicine if you have a block in this energy or Chi you have illness. For healing to occur you need to unblock the meridian and allow the energy to flow freely so that the body can heal itself. I do not have a degree in this stuff yet so I apologize for any misinformation. Anyone who would like to share their knowledge on this please feel free, but you get the basic idea. So this device measures the energy flow and if things are off it can also make a remedy using electronic signals. I am only scratching the surface to explain this but it is pretty amazing stuff. So anyways, I am learning to become certified in the EDS. We have a unit at home and are able to test Scott weekly to monitor the progress of the remedies that they provided him and we can make changes as needed. It is a lot to learn, but I really like it. The interesting thing is that when we tested him we found that we came up with the same information as our friend came up with who is certified in energy medicine. She tested in the traditional ways with muscle testing. Also the chiropractor we are seeing uses the same method of muscle testing and also came up with the same information. So we feel we are on the right track with things and we are working on getting his meridians back in line. There are many methods to do this and it is way too much to get into in a blog.

One of the other method of healing we use to treat him is Reiki. We are blessed to have a Shamanistic healer in the family. He uses Reiki to help to balance the energy in his body and promote healing. I have been fortunate to have received the Reiki I and II attunements so that I can also give him Reiki for healing. I have been working with him and have been able to do Reiki on a few friends as well. I really enjoy it and it is becoming second nature as I use it more. It has made me realize that this is something I might like to do as work as well. I feel like I have opened up a whole new world and I am beginning to find what I am meant to do. I’m thinking of taking some massage therapy classes and I would also like to study acupressure.These will start in the fall. There are a lot of things that need to fall into place for me to be able to pay for the classes and take that time away from the family to take the classes. Right now it is a plan. Not sure how it will all unfold.

So it seems that there is a lot of study in my future here as I learn these different modes of healing. The first thing that is necessary is to become certified in EDS. I have the materials and have begun the process. Also, I am practicing Reiki any chance I get. If anyone would like to experience it I would love to give a complimentary session. I really am not sure where this will all lead but have decided to start down the road and see where it goes. It feels right and One never knows….

So today I am starting this blog. Please bear with me as I am new both to this blog site and also to the idea of blogging.

Everyone who is reading this knows who I am so I am not going to go through any introductions since that just seems silly to me. I would like to just give a brief history to date on what has been happening so far this year for those of you who might not know what is going on here in my life.

I think to completely understand what we are going through I would like to start with the accident that happened in October of 2009. Scott was driving to a friend’s house and was stopped at a light when a drunk driver rear ended him while driving 40 miles per hour. She never even slowed down. At the time he went into the doctor because he was having tingling in his hands and feet and also on the left side of his face. They took MRI’s of his neck, back, brain and x-rays of his brain stem and his neck. They found that he had a bulging disc in both his cervical and his lumbar spine which would explain the tingling in his hands and feet but they could not explain the face tingling. After running all kinds of test they just decided they couldn’t explain it. After some physical therapy he was told by the neurologist that he should just carry on with his life that these things do not heal and there wasn’t anything he could do. They said that unless he developed further problems that there was nothing further they could do.

He went ahead to see an acupuncturist who was able to relieve the pain though he still had the tingling in his hands, feet and face. Everything seemed to be going along okay other than occasional flair ups until late fall of 2010 I began to notice that his voice seemed different at times and he sounded drunk over the phone. The funny thing was that he was no longer drinking. Then I started to notice it when he was in person usually at night when he was tired. Finally in January this year it became more noticeable at different times of the day and other people were noticing too. He also showed me how the muscles in his left arm were twitching.Also he was noticing that when he would drink water sometimes it would go down the wrong way and he would cough a lot. We thought this was really strange and thought that he should go back to the doctor and have them check his neck out again or find out what was going on.

The trip to the family doctor had him concerned but he said that this wasn’t about his neck and was testing him for all kinds of other things. A full blood work up was done and a scan of his arteries in his neck and also a scan of his brain. When we got the test results back we found out that he didn’t have a tumor and hadn’t had a stroke and this was all good news but the doctor said that the scan of his brain showed activity that was suggestive of ALS. I had never heard of this before. It is commonly known as Lou Gherigs disease. It is a disease of the motor neurons. What happens in this disease is that the motor neurons that affect voluntary muscle movement begin to die and so the person loses the use of the muscles of the arms, legs and eventually the lungs and the ability to swallow. So obviously this is a really ugly disease and devastating news for us to hear. Of course there were other test that would need to be done to be sure, but it wasn’t looking good.

So next we went to a new neurologist because the guy who had originally looked at him was now a neuro surgeon and couldn’t see him now. So we were referred to a different one who did a full exam and decided that we needed to look at his neck to be sure that something wasn’t being pinched. He felt that it was a slim chance but that it had to be ruled out. He also referred us to a different neurologist who specialized in ALS. So he went and got the MRI of his neck and appointment with Neurologist number 3.

The appointment with the 3rd neurologist was where Scott was officially diagnosed with ALS. He did a full exam and told us that he was 99% sure that this was what he had. When we asked about the MRI of the neck he told us that the MRI was normal and that unfortunately it was not causing his symptoms. He gave us some literature to read on the disease and some support group information with pictures of everyone in wheel chairs and info about where we can get him one and his ventilator should he need one etc. and he sent us on our way.

That was in March. In April his brother flew him to Hawaii to see Dr. Lam. He is a MD and also an Integrative medicine doctor. He examined him and found that his jaw was out of alignment and that this was causing a lot of his issues. He also found that he had a degenerative disc in his neck and found he had some toxicity going on in his body due to a few different things. He recommended traction for his neck and is treating him with homeopathic nosodes for the toxicity.

He came home from Hawaii and after having his jaw adjusted and two doses of the medicine he went about a month without the choking episodes that had been occurring daily before the trip and he was beginning to put weight back on.

In the mean time he has sought out the help of many different holistic practitioners who have been able to help on many levels but his symptoms are still present. It took 2 moths to receive the nosodes from Germany and in that time he began having some choking episodes again and started to again drop weight. He’s noticed that his fine motor skills have changed and he has lost some strength in his left arm.

I finally was able to get him to a chiropractor a couple of weeks ago and since he went to him he hasn’t been choking, his weight is beginning to go back up and he is seeing changes in the movements of his left hand. The chiropractor agrees with Dr. Lam in that he feels that his symptoms are being caused by the injuries from his accident.

It is disturbing that the MRI of his neck that the 3rd neurologist said was “normal” was far from normal. It shows that he has a degenerative disc in his neck. The chiropractor says that these generally will either heal in 6 months or they will not heal only get worse. He has a decompression machine that is supposed to help with this. It is really expensive and we aren’t sure how we are going to pay for it but we definitely do not see that we have a choice in the matter. So, that is where we are so far in all this. It has been 6 months since we started down this road. We are all holding up fairly well. It has been life changing to say the least.

Scott seems to keep a pretty positive attitude about things which I think is huge! I believe that the power of the mind is very big. I know that the body has the ability to heal itself and I know that there are a whole lot of people who have healed when they were told they wouldn’t. We are determined to move forward and stay positive. It isn’t always the easiest thing to do but it helps knowing that everyone is there supporting us and sending us love and prayers and energy. For that I can not even begin to express my love and gratitude in return.

I think that is it for now. I know this was kind of long and most of you guys know this info already but just for the record and for those of you who haven’t been in the loop for whatever reasons, this is what is going on in a nutshell. It doesn’t begin to describe the day to day or the ups and the downs. It doesn’t tell anything of the positive things that have come from this and the friendships and support and crazy paradoxes that we continue to find, but it will help to have the information as I go along in this blog as I share more of that aspect of things. Thanks for reading. Love to all of you! Namaste

Hi Everyone! I am Bonnie and I am writing this blog to document my journey with my husband Scott who was diagnosed with ALS in March. Since then we have found two practitioners who have disagreed with the diagnosis and are working on many levels to find healing. Welcome and thanks for reading.