It’s been two years that my alternative physicians and therapist have been in a relentless pursuit to rid my body of toxins and limes organisms. We are working under the assumption that one or both of these are the cause of my symptoms, which, as I’ve reported before, my traditional doctors think is all hog wash. 

Living, again, in the south, it doesn’t take long to pick up the speech of a southerner. The you alls, hog wash …. come back like a duck to water. Talking about hog’s, I was disappointed that they no longer do greased pig chases at fairs around here. It was fun watching these as a kid. I assume the animal rights folks put a stop to this. Being enlightened does have its costs.

Any way, to continue what I was saying, after two years of almost weekly flights to Charleston, 40 plus pills a day, dry sauna two to three times a week etc, etc, etc… you begin to wonder if the effort, time and expense are worth it. This wavering in faith and hope is difficult and emotional. Faith and hope requires that you believe that what is being done will work.  Having these struggles with doubt is worrisome. It causes wonder that one day I won’t find enough of both to continue believing I will survive this. I read blogs and posts from people with ALS who are further along in their progression and can hear the fear and acceptance in their words that nothing can be done to help them. The statistics back up their fears. Very few survive long with this decease. Unless missed diagnosed, almost all pass from it.

So can I survive?

I really do believe so.

I’m just going to have to battle through these weak moments and frankly my wife Linda makes it impossible to succumb to these treacherous thoughts for long. She is immovable in her optimism that this can be fixed. A quality I occasionally considered annoying through the years prior to my diagnosis. It’s interesting how God has put the things in my life that are needed most. Linda is truly one of Gods blessing to me.

I attended my first “Clinic” at Emory University Hospital. During these thrice annual sessions I meet with each of the professionals that can help me properly prepare for the various symptoms that are developing with this disease. My symptoms are starting to progress, albeit slowly. All symptoms and progression is isolated to areas above my waist. The most impacting symptom is the diminished use of my hands. This effects my eating (can’t cut food, hard to open containers), which reduces my weight (down 12 lbs in five months) which worries everyone as weight loss and nutritional issues are a major factor with ALS. So first up at the clinic was the Nutritionist. She was sweat and about half my age. I’m starting to realize that there are more and more kids half my age in positions to influence my future. A soon to be subject of a future rant. Any way, she, in a nut shell, wants me to load up on calories & protein. As a former 245 lb (now 196 lb) self, I know how to do this. She gave me a list of stuff to eat that any true southerner would consider a blessing. You have to read some of the recommendations. It’s a remarkable list.

• Use heavy cream or whole milk when a recipe calls for milk.
• Add gravies and sauces to meats, pasta, rice and vegetables.
• Whenever you can, use extra butter, cream cheese, mayonnaise, sugar, syrup…
• Add ice cream to soft drinks…

Based on there menu recommendations Cracker Barrel restaurant is my new eating venue of choice.

Another symptom is arm weakness to the point that I cannot straighten them above my head. So next up was the Occupational Therapist, another nice, young, person.

Not much can be done with this problem. Muscle wasting and strength loss are hallmarks of ALS. She recommends stretching to extend range of motion as long a possible and she introduced a magazine of assistive devises available as my functionality goes away. So far the best assistive devises I’ve seen are my daughters Lexy and Dani. Seeing how they won’t mow the lawn (another rant in the making), we’ll add this stuff to there chores list for a while.

Moving up we arrived at a face to face with the Speech Pathologist, who also handles swallowing issues. I have both and they are getting worst. She made me talk and swallow crackers with stuff on them and watched as I did all this. She then confirmed what I already knew with a, “yep you have issues”. I must say she was quite entertaining through all this, but as with all things ALS, not much can be done. She gave me some brochures on communication and swallowing and directed me to web sites that cover computer speech devises that most ALS patients progress to over time. It’s really cool stuff!

The last specialist was the respiratory nurse. She made me blow and draw air into a measuring devise that determines remaining strength in these areas. My ability to draw air into my lungs was off the chart, so no issues here.  My percentage of blowing ability was 87% down from 90% nine months ago. This is significant. Most people with ALS are under 50% at the same point in time I’m in. This is what keeps them saying I have a slow progressing form of ALS.

In between the specialist, staff from the ALS Association, Muscular Dystrophy Association and a social worker popped in the room to chat and cover the services they offer. Its impressive how much these organizations can do and how much effort and money they put behind their mission. Thankfully I was relatively well insured for a disability. For those who are not these organizations are a God send.

The last stop is a visit with the Big Kahuna – Neurologist Dr, Glass. Well Dr. Glass, being a man in demand, I guess, and evidently busy (I did see him running around) never showed up for our appointment. So they sent in a pinch hitter after an embarrassing (for them) wait time. I feel another rant coming. We’ll not much new from the affable Dr. Khan. He looked over everything the specialist did and confirmed that I have a slow form of ALS. Honestly, these guys can’t help but reinforce the clueless genius tag I’ve adopted for them. I tried to ask questions about current research developments. I floated out some thoughts about alternative treatments. All I got was brief responses that where sufficiently ambiguous. His lawyers would be proud.

On balance a good effort on Emory’s part. Everyone does seem to care a great deal about the folks with ALS. They truly are doing all that can be done to mitigate the affects of this disease.

At this point we will continue to hope and pray the researchers find a cure sooner then later.