The Smiths of GA

For the last few months I’ve been on a new treatment plan.  In December we scraped all previous treatment plans and our stable of doctors and hooked up with an alternative clinic just north of Atlanta.  This newly discovered clinic is a collection of doctors, naturopaths, specialist, therapist and folks unclassifiable.  Depending on your point of view ones impression could be what an impressive group of forward thinking trail blazers or I’ve just entered a twilight zone version of the land of wacky misfits.  I remain unsettle on it. About the time I start thinking all is normal, someone will launch into a rambling rant about conspiracies among FDA, insurance companies and pharmaceutical companies.  My main comfort with all this is how busy they are and the many patients who tell how they saved them.  I’m working under the thought that they are straddling that fine line between genius and crazy. 

My treatment plan is fairly simple.  I do a bi-weekly chelating IV drip and one of the unclassifiables hooks me up to a machine by placing four suction cups at various places.  These cups are tethered to a unit that sends electricity at low levels and frequencies for twenty minutes.  It’s really weird. 

Once a week I see a message, kind of, therapist. Her wall of frames says she’s had naturopathic training.  She will cross the line between genius and crazy four or five times a session.  But she has the hands of a healer, so crazy is, well, sometimes interesting, occasionally bizarre, but, in a word, ignorable.

More to come. 

 I continue to hold my own as we search for a cure for my ALS.  I started a new treatment in December that has had some success with ALS.  We are hopeful that it will work for me.  So far, we’ve seen some small improvements.

The activities involved with having ALS are well integrated into the daily “going-ons” of our family. Each member takes their turn feeding, shaving and brushing my hair and teeth. Linda does the bathing and dressing, for obvious reasons.  And she and Lexy share driving me around.  Thanks to my sisters picking up one day a week, Linda drives the two hour round trip to my treatments only twice a week.  This one day relief for Linda is helpful.

I’m not the one most affected as a result of my ALS.  For sure being sick is the pit’s, but, as a result all I can’t do is done for me.  Great care, expense and deference are taken to assure my comfort. I look at Linda, Lexy and Dani and how their lives have been altered.  Of no fault of there own, they had thrust upon them a responsibility most will be fortunate to avoid.  How many teenagers get up extra early to feed their parent before they go to school? Linda’s life is centered on my care.  Her level of subordinated self concern to mine is far greater then I ever perceived a caregiver needed to do. The saying that you can’t truly understand someone until you walk a mile in there shoes, to me, rings true.  The demands on a caregiver are relentless.  It has been a revelation how so.  Yet she and the girls remain optimistic and cheerful. They are a blessing to me.

The installation of the peg line (feeding tube) was the right move. I’ve gained weight and we are now back on offence after several months in almost complete retreat trying to deal with all the changes.  It had us worried that the day after the peg line was installed I caught double pneumonia. The days stayed in the hospital were a bit traumatic, a real test of my manliness. It has taken months to get stabilized. It has been only recently I could do email without one of my girls helping. I still use an on screen key board clicking one letter at a time. But its good to not need help.

Our May ALS clinic forced us out of our favorite place to visit; denial. There were facts that could not be ignored. We had to deal with them.

As the previous post said, Dr. C.  redeemed himself, kind of. In November he recommended an itergrated protocol developed by a highly respected Lyme’s Dr. in Hyde Park, NY. He prescribed B12 shots daily, an antibiotic shot four days a week and asked us to go see this guy. Did you notice the word SHOT. Linda was none to excite about poking a two inch 22 gauge needle in me. Frankly it has adjusted my attitude. You know an annoyed wife, armed…you get the idea!

We made it to New York in February and spent a half day with Dr. H and his staff. Their bottom line was “we believe you have Lyme’s disease, but don’t think it’s the cause of your ALS”. They tweaked my treatment regime and sent us on our way. This delinking of Lyme’s and ALS was a little confusing. Over time our doc’s pretty much determined staying our current course was the best option because, frankly, no other options were known. Cluelessness revealed again!

A side effort over Linda’s aversion to giving shots ensued with Dr. H’s physician assistant. The alternatives all required a prescription written by a doctor licensed in Georgia. After weeks of searching locally and being told no, we called our doc’s in Charleston hopping for a lead. Well low and behold they have a former associate they trained with a practice north of Atlanta. One phone call and one appointment with Dr. T and we’re set. Well, until Dr. T. (young female) question’s Dr. H’s (old guy) protocol.

We had five doctors and a potential turf battle brewing. YIKES!  Our quick fix for this dilemma was simple. They can all get together and hash it out among themselves. Which they did. We now have four docs. The southerners banded together and bounced the yankee. 

Parallel to all this craziness I went through two ALS clinics at Emory. The January clinic brought the respiratory team to bear as my breathing dropped below the 80% acceptable threshold. There response is machines, three of them, that I was being kind of passive aggressive about using. In May I got the ire of the respiratory team for not being good and everyone was hands on hips, finger wagging excited about my further weight loss. They started a full on press that I have a feeding tube installed. Ugh! We left with a lot to think about. 

Oh did I mention Lexy got her learners permit. Horrifying