NeuroTalk Support Groups - Update Visit By Craig

I have not visited in quite some time for many reasons. Daily challenges have become almost intolerable, but I attack each one as it presents and go with the flow. Luckily, I have a very understanding and supportive caregiver, my wife.

Yes, I do attempt to post regularly on facebook and honestly, as Debbie will confirm, what people read and my reality are quite different. But if one thing I post helps someone else at a particular time when needed, then it is worth the effort.

My book has done unbelievably well to the point Amazon has removed it from the discounted sales list and sells it full list price. All of this is totally unexpected by me and I still don't believe the impact it is having on people all over the world. People have contacted me after reading my book from New Zealand, Australia, UK, Canada and even Kyrgyzstan, Russia. This is all very humbling and overwhelming at the same time.

My "long term goal" is to be able to attend my son's wedding on June 2nd in Ohio. As you may know, my doctors strongly recommended I not make the family reunion in October of seven days in Disney World. Hind sight, that was a good call on their part. This disease has progressed to the point I literally have no specialist available who feel there is anything more they can do for me, so all medical treatment is now maintained by my primary care doctor.

Symptom wise I've now had to use special eating utensils, which are over sized and weighted, as well as a bib while eating. It doesn't bother me though. My diaphragm and lungs are weakening causing me to be short of breath constantly and I'm still 3 percentage points above meeting the required level for home oxygen. Exhaustion is chronic with continued sleep disruption and then crashing and sleeping for up to 18 hours straight. Speech is very obviously impaired, choking and drooling have increased, spastic biting of my tongue and cheeks happen several times a week, many time drawing blood. Obvious progression of blurred and double vision have occurred also and I now have a 27 inch digital monitor for my PC.

That's about it. Should you really like to get a better understanding of my disease, symptoms and challenges, I was sent a YouTube link by a medical friend called "1 Liter of Tears" from Japan. I've place a four minute and professional nine minute short trailer on my blog. This is based on a young girl in Japan diagnosed at 15 and dying at 24 from my disease. They made an 11 part drama and then a full length movie about her life and illness. I was profoundly impacted by just these two YouTube videos, as I believe you might be too.

Thank you for your concern and following up on me. This means a great deal to me. Peace be with you all.