RespiteMatch.com Health Blog

Kathy received a wise warning regarding internet scams, but avoiding the incredibly empowering tool of the internet is not the solution. Since Al Gore invented the internet ) there have been internet scams. Unfortunately, they direct their efforts toward the weak and desperate. On the other hand, concerning ALS there are legitimate individuals offering alternative therapies. When it is called treatment or cure it quickly becomes illegitimate.

I have been reading ALS boards since 1990. I imagine the first board was on Prodigy. Back then the miracle cure was snake venom. Over my 18 year ALS journey I have seen many cures/scams come and go. The last was the China stem cell infusion. While I am certain stem cells are the future for a cure it will not come from a third world country. It always saddens me when I see individuals taken in by the latest great hope. I know precious funds will be wasted and worst of all the destructive disappointment to follow.

Hope is critical in order to live with ALS. Without hope survival is not a possibility. False hope is more destructive than no hope at all. I cannot stress enough how powerful hope and the human mind is. After I recovered from the typical death sentence we all receive I decided ALS would not take my life. With my faith, technology and my determination I am certain that is why I have beaten the odds.

I have not taken extraordinary measures as far as supplements and vitamins. I do eat well (real food down feeding tube) and I keep myself hydrated. I take vitamins. I demand excellent physical care. This is something that is easy to let slide, because you’re tired or your caregiver is not adequately skilled, but excellent physical care is critical for longevity. Just to emphasize how critical excellent physical care is I had a feeding tube stoma infection last fall due to incompetent care. Unfortunately, the infection migrated to the titanium mesh in my skull from a previous brain computer interface technology surgery. To eliminate the infection it will require two brain surgeries.

What I put the most effort into is maintaining a healthy and positive mental outlook. I have had a very difficult two years practicing what I preach, but things are looking up now. While we all have a difficult row to hoe, you never have to look far to find someone with a heavier burden. In the mid 90’s I had the pleasure of meeting a young lady with severe cerebral palsy. Any time I start to feel sorry for myself I think of Heather and all of the experiences I have had that she will never know. My therapy has been helping others. I am sure all of you get the same satisfaction helping each other here.

In closing, take good care of your, health mental and physical, save your much needed funds and have confidence knowing that when a cure or a therapy to arrest ALS is found the news will spread faster than a wild fire. For those of you fortunate to have financial means and willing to endanger your health be my guest to try anything, but I ask you to please remain silent and not build false hope in other PALS and their families. I urge everyone eligible to participate in research studies. I realize double blind studies are a cruel irony when it comes to researching terminal illnesses, but it is the only way to achieve accurate results. A cure is coming and it will be sooner than later. Maintain hope and hang in there.

All the best,
David dx’88