This was a comment posted in the comments section in answer to Michael Harper’s post
One could expect nothing less of you as you continue the bravery and dedication you displayed as a police officer in your new role as survivor of this very rare disease. I can only imagine the battles you face so courageously each day with legs wasting away and arms showing the same symptoms. I thank God every day that my IBM is even more rare and I have no useful muscles in my neck so my head is on my chest. My world view is belt buckles, belly buttons, and below. (Someone suggested that I have a great title for a book on living with IBM.] But I can still drive, still walk, still go about living a somewhat normal life, and I feel so grateful, but also guilty when I complain because somehow I am betraying those who face the worst symptoms of this disease as you and so many others do with such courage and innovative ideas. My legs grow weaker, my arms begin to grow numb, but they still function — for now. And as we must, I carry on.
Because I also have Lymphoma, I have added some infusions that may be helping: namely, IVIG once a month and Retuxen, a new form of chemotherapy, one month on and two months off. In addition, I am seeing an acupuncturist for the pain which results from struggling to hold up my head, and the back pain which also results from the strain of holding the head an inch or so off the chest. To see straight ahead, I must arch my back which renders me almost unable to move my legs for a moment or so as I try to right myself again. But my talented acupuncturist knows just what to do with me and I can feel the positive correlation between needle and the loss of pain. I don’t know if anyone would benefit from such treatment, but it has helped me and I believe in going forward with alternative medicine. My oncologist, infectious disease specialist, neurologist, and internist all have given the treatment varying degrees of thumbs up for the regimen.
So, congratulations, fellow traveler on this journey to somewhere. Maybe we will make the disease a bit easier to bear for those who follow us. Continue to think outside the box and record your creative and innovative ideas to inspire all of us. And don’t forget to include the results of your exploits. Both in success and in failure allow us to be vicarious partners with you Officer Mike.
Annette in San Diego