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
