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Jim's Battle Against ALS
Apr 13, 2018 Latest post:
Aug 2, 2018
Welcome to our CaringBridge website. This site is our way to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Love - Cassie Jo Bowen
Jim's journey began in early November 2017. He noticed some trouble picking up his left foot as we walked "Sluggo", our dog, around the neighborhood. He decribed it as feeling like maybe he had a pinched nerve in his back. A visit to the primary care doctor, led quickly to a visit to the Neurologist. MRI's of the complete back and head were completed along with EMG nerve conduction studies. December 6th, Dr. Schaeffer came up with a working diagnosis of motor neuron disease, but was wanting to stay optimistic and told us many different things can mimic this, so asked if we would be willing to go to Houston Methodist Neurological Institute and see Dr. Appel, a leader in this field, for a second opinion. Of course that's what we did. During the rest of December, Jim started using a cane when walking longer distances, and we shortened the walks with Sluggo.
Jim and I went to Houston for a 3 day complete workup January 8-10. Long story short (and boy was it a long 3 days!) Dr. Appel gave us the diagnosis of ALS. We have a complete care team of about 3 Neurologists, 3 nurses, a pulmonologist (whom Jim didn't see as his lung function was excellent), physical and occupational therapy, and a social worker. Dr. Appel and team were are very positive and told us "don't Google it!" this is not the Lou Gehrig's of even 20 years ago, people are living longer. Also, Jim fit the criteria to begin the first new drug in 22 years for ALS. It's call Radicava, and it is a 1 hour daily IV infusion for 2 weeks on then 2 weeks off. We were able to navigate the complex system of getting Jim on Radicava in just over 1 month and he is the first person in Amarillo to be on it. He had a PICC line for the first round of infusions, then had a port-a-cath placed which is easier for him when he's not receiving infusions . We have been blessed with great home health nurses who have trained me to be able to give it at home. This new drug was shown to slow progression by 33%.
There are many also new therapies being testing including stem cell therapy and one company, BrainStorm Cell Therapeutics, has their growth medium which is supposed to make the stem cell more "neurologically active" in phase III trials here in the US. Many of you friends, know I have been studying the Hebrew language and the Hebrew roots of my faith, and was blessed to go to Israel in 2012. Well, all that to say I don't think its a coincidence that BrainStorm is an Israeli company!
The physical therapist in Houston diagnosed Jim with a drop left foot and when we got home he got an ankle/foot orthotic which helped his walking some. During January and February Jim was still working full time and his walking had really slowed and he was using a cane to get around. But by the last week in February, he was getting more fatigued and it was much harder for him to walk. , I borrowed a 2 wheel walker and it was helpful. Then, the first week in March he tried a 4-wheel walker and it helped even more, but the fatigue continued to increase. On March 29, he was diagnosed with blood clots down his left leg, in his upper right leg and a small clot in his lung. He was hospitalized for 3 days. This insult to his body has been hard, but we are prayerful that some of what seemed to be disease progression was complications from the blood clots. He has been restricted to a wheelchair since being released on April 1, but will start some home Physical Therapy and we are hoping he can get back to standing and walking some.
We are believing for God's healing in Jim, whether by Miracle or by Medicine, all for HIS Glory!