FightALD! Blog

Wow so much has happened since my last post. (Warning…this is a long one)

Hmmm, let’s see, I was about to spend the 4th of July and my birthday in Saratoga Springs. I was in a very nice campground if you don’t count the humidity and the hoards of mosquitos. I think my OFF spray worked more like a magnet than a repellant and those little buggers timing was impecable. Just about the time my coals were hot enough to cook my dinner I’d be eaten alive and would give up and head inside. Unfortunately, there were hitch hikers that came in on my clothes. One night I was so fed up I sprayed down my whole bed and slept with just my eyes and forehead uncovered and when I got up the next morning I had so many bites my right eye was nearly swollen shut.  I looked like I’d taken a sucker punch. I got a lot of the swelling to go down with ice but I still looked pretty scary. I’m sure I freaked a few administrators and receptionists out, haha.

I drove on into Vermont and  continued to get eaten alive by squeeters, but keeping the eye on the prize forged on and had some great experiences at medical facilities there, New Hampshire and Maine. I camped near Old Orchard Beach in Maine over the weekend and since I’d never seen the east coast before took the trolley down to the boardwalk/pier. Quite different than the west coast although the sand looked the same. But way more people on a much smaller beach and the pier was lined with shops and restaurants so you couldn’t even see the ocean. I took some pictures but had to replace my phone when I was home recently and don’t have access to them, dang. I ended up walking down the beach to a restaurant that had a deck on the sand and…fresh Maine lobster. Elvis even showed up and danced for the crowd. I think he was an escapee from a nursing home with a really bad wig.

Trying to figure out where to store the RV while I flew home from Boston was not looking so good until I did a search for park, stay and fly and found a Red Roof Inn that not only had that program but also room to park the RV. After I told the manager about my mission he waved the $5/day fee for the additional time I needed to leave the RV there. Totally cool. I also got two checks in the mail when I got home from medical administrators that I met while in the New England area the last week I was on the road. And two complete strangers, one at a grocery store and one at a campground asked me about ALD and each stuffed a $50 bill in my hand to help with gas. Also totally cool.

I flew out of Boston to Illinois and attended the ULF (United Leukodystrophy Foundation) conference for my 7th year. They had recently covered my mission in their quarterly newsletter and it was great to have that acknowledgement. It was also great to hear from the ALD specialists from around the world about the research advances and possible new therapies and visit with the doctors and families I’ve come to call friends over the years. One of the doctors who was so instrumental in helping me after Sawyer’s diagnosis, Dr. Charlie Peters, was there after a two year hiatus. He is a pediatric oncologist who specializes in bone marrow transplant for boys with ALD. His jaw dropped when he saw me after learning about my mission and after we spent some time talking, invited me to co-author an article for publication in the Journal of Pediatrics with the hope that we can elevate it to CME (continuing medical education) level. I sure hope that comes to fruition.  I am sad to say that since the conference the ULF has lost two key players. Janet Reed, a board member and Ron Brazeal, co-founder and Executive Director. They will both be missed.

From there I flew home and after only one day of rest drove up to Gina Cousineau’s home in San Clemente, the founder of BAHBAD, the  Be A Hero, Be A Donor foundation, inspired by the loss of her son Evan to ALD after transplant, for the first collobarative meeting of 7 other ALD organizations from around the world. Quite an honor to be involved and we are now forming the ALD AMN Global Alliance so that we can have a louder voice, a more focused unity for raising funds for research and of course, where I come in, awareness. The organizations are BAHBAD, Fight ALD, the Myelin Foundation (founded by Lorenzo’s dad) and Cure ALD all from California plus Stop ALD, ALD Life from the UK, and the Australian Leukodsystrophy Support group. An honor indeed to be associated with these organizations.

That was a two day event and the following weekend I had a Fight ALD booth at the grand opening of the Green Flash’s new brewery in Mira Mesa. They are one of my major fund raisers through their anniversary beer festival events and it was great to see their new facility. I am excited for their first anniversary festival coming up in November. More info to be posted as it comes available.

Stone Brewery, my biggest supporter and brewer of Sawyer’s Triple and my husbands employer also raise money through their annual anniversary celebration. Their 15th anniversary was celebrated on August 19th and 20th, a two day event this year. I volunteered to pour beer on the 19th and geez those fans kept me so busy I could hardly come up for air. For the main event I had my ALD Awareness booth and brought volunteers to pour beer. It was awesome, as usual, and I anticipate was quite successful. It totally wore me out and I was not looking forward to having to wrap up all my last minute details Sunday before flying out on Monday, but managed to get everything accomplished.

Lots of work goes into each and every one of my trips and planning this one was one of the most difficult. I was feeling a lot of apprenhension about even attempting to go to the major cities in the New England area, Boston, New Jersey, New York, etc. and now that I was here for Irene, can’t help but wonder if my intuition was trying to tell me something. More about that later.

See, I told you this was gonna be a long one. I flew back to Boston on  Monday, August 22nd and got right back at it on Tuesday. Most of my visits over that first week were quite successful. I even got invited back to talk to docs and nurses at one of the Urgent Care facilities. All of them had heard or seen the Lorenzo’s oil movie, but none of them actually knew anything about ALD. So sad, but again that’s why I am out here doing this. At least they are educated now. That happens now and then and every time I am alarmed to see the surpirse in their faces when I tell them the statistics. Still wish I could elevate this to a larger scale through the media. You’d think now that I have been to something like 2000 facilities across 45 states they would take an interest. I’ve tried to get the associated press to cover the mission, but no luck. That won’t keep me from trying, however.

Parking in downtown Boston was impossible so I ended up having to abort the 5 stops I had scheduled there and start focusing on getting out of the path of the hurricane, if at all possible. Also impossible was camping. The one place I did find was so remote they only had water, no other utilities and I don’t have a generator. I really need electricity to stay connected to the world via my phone and computer and also for primping in the mornings so I don’t look too wild on my rounds. By the weekend all the campgrounds had been closed because of the storm, anyway. Not sure what to do or where to head I just continued on my rounds for the remainder of the week and stayed in hotels and kept the news on round the clock. I got a room in Brockton Friday night and had planned to get up and drive west to get away from the coast but as the path of Irene was updated realized the eye of the storm was expected to go further ashore and reak havoc on the exact area I had planned to go to. I lucked out that Brockton ended up being probably the best location I could have been in. It sat up on a berm so no chance of flooding and by the time Irene hit, had been downgraded to a tropical storm and the winds never really got over 76 mph. It was still pretty scary I have to admit.

REDRUM, REDRUM!

I stepped out front to buy a Sunday newspaper when I heard three loud booms and then the electricity went out. The wind had blown some trees over on the power lines and the transformer blew. I had thought ahead and bought stuff for sandwiches, water and wine and packed a cooler to keep in my room. I also had a flashlight and a candle so I was a little better off than some of the other guests.  But after holing up in my room all afternoon I stepped out to this scene right out of The Shining. Talk about creepy. It was so quiet I thought everybody had left and I was the only one left until I walked down to the lobby. This is what the storm looked like from the back door of the hotel. http://youtu.be/HZDf7qnFKqo

By Monday I was still in the dark and knew I needed to give all the businesses at least one day to get up and running before I started my rounds again. I located a KOA campground that was somewhat near my next destination, E. Providence, RI that was open for business and decided to head there. I became quite emotional seeing the damage from the storm.

AHAH! PERHAPS THIS COULD BE THE PROBLEM?

 This was just a couple blocks from the hotel. I’m not sure what the fake goose is doing out there, but you can see the tree in the middle of the street and downed wires all along the sidewalk and crossing the street. All I could think was I hope nobody got injured. On my way to the KOA I passed a sign that said Cape Cod 31 miles which wasn’t a lot further then where I was heading and since I had the afternoon free decided to go check it out. A lot of businesses were still boarded up but I managed to find a restaurant to have traditional fish and chips and a campground in Plymouth that had electricity.

I saw quite a few more downed trees and the campsite was pretty messy.

Tuesday night I found a campground that claimed on their website they did not sustain damage and were still open so I headed there. When I arrived at 4:30 there was an OPEN banner waving out front but the office was clearly not openand there were only a handful of campers. I called the number I had for them and left a message. I hung out for a while but noone ever called back or showed up so hit the road for another campground down the road. Well it would have been down the road had my GPS taken me to the right address. It too was closed and after calling a couple more with no luck decided to head to a hotel. It was now after 7:00 and I was getting pretty tired of driving around. I stopped at a Comfort Inn only to find out they didn’t have a vacancy. So I drove down the street to a Quality Inn, also booked. Now I started getting a little nervous that I wouldn’t be able to find a place to stay with all the power outages across the area so pulled over and did a search on Travelocity. The only room coming up showing availablitily was a Fairfield Inn in Milford, CT still a bit of a drive so I booked it online just to be in sure. It was a beautiful suite and was $138, alot more than I wanted to pay, but I felt like my hands were tied. So far every hotel I’ve stayed at has given me discounts because of my mission but since I booked this room on line, I didn’t even ask. However, I told the front desk clerk about my mission and left a brochure with him and when my bill was stuck under the door the next morning discovered he gave me the room for $98.

After Providence I headed back into Massachusetts and observed such devastation from what I found out was a tornado they had on July 1st and then getting hit with Irene. This is where I was originally heading to get out of the storm so I was really relieved I changed course when I saw this.

Now they are expecting more torential rains and flooding. I just saw pictures of the damage in New Haven on the news which has been declared a state of emergency by FEMA. I will be in New Haven on Wednesday. Totally unpredicatable weather patterns this entire year, every where. I hope next year will be kinder to me and everybody else, for that matter. I’m spending my holiday weekend here in East Hampton where we were withouth power all Friday and Saturday, and part of Sunday and am glad to finally be able to get my post completed.

I’ll update again before I head home at the end of the month.

WHAT A MOMENTOUS OCCASION THIS WAS!

 From Erie I crossed into New York and just seeing this sign was both and exciting. It is hard to believe I have actually made it this far. I am really enjoying New York state so far. Buffalo was a neat city and when I realized that one of my camping options was at the Niagara KOA I rearranged my schedule a bit so that I could take a side trip to the falls for a couple hours the following morning. I am so glad I did. Even though it rained the entire time, which makes some of the pictures a little hard to make out, it was spectacular. I guess the rain kept a lot of people away so the park was not busy at all and it was easy to get around. I’m having a hard time inserting photos so added a second page to my blog with the photo montage so be sure to check that out. Got some pretty spectacular pictures despite the crappy weather.

Anyhow, from there I headed into Rochester and Syracuse. Upstate New York is very beautiful and I have enjoyed my drives inbetween destinations and campgrounds. Schenectady, Albany and Troy were great successes and at one Urgent Care I stopped at I was able to engage 4 nurses and a doctor in conversation about ALD. They were quite impressed with the information since they barely knew anything about ALD or AMN. During my visit they looked up contact information for one of their local news stations for me which turned out to be a sister station of News14 out of Charlotte. When I called they said they would check out my information and the other story and get back to me and since I hear that alot, wasn’t holding my breath. But, lo and behold, I got a call back later that afternoon with an invitation to come to the studio for an interview the following morning.  Here is the link. http://capitalregion.ynn.com/content/548684/woman-on-a-mission-to-raise-awareness-about-ald/

This was my first in studio interview and I pretty much nailed it, haha, although I look a little nervous. So now I am camped just outside of Saratoga Springs for the holiday. It rained much of last night and off and on all day today so should be nice and steamy tomorrow when the sun comes back out. I originally was going to meet up with a friend in Woodstock for the weekend but she ended up having to go out of town for business. I had added Kingston to my original itinerary since I would be passing through there enroute to her place, but because of the change deleted those stops and am now going to make it all the way to Maine and then Boston where I will fly out to attend the United Leukodystrophy Foundation’s conference before heading home for a while. BTW, mark your calendars for Stone Breweries Anniversary celebration for charity on August 20th. I need volunteers so if you are available, send me an e-mail at janis@fightald.org and I’ll put you on my roster.

I hope you all have a very nice 4th of July.

I flew back to Charleston, W.V. and had great success there. The first hospital I went to directed me to the mother ship hospital and I was able to meet up with the medical staff director who took the brochures to distribute to all 4 of their hospitals, including the Children’s Hospital, and medical offices. What a relief because parking was a nightmare. Speaking of nightmares, my next destination, Morgantown, didn’t have Verizon coverage so I was without GPS. Great! Still curious about my hypertension? LOL! I figured I would just kind of wing it and follow my intuition and crazy enough, and kind of spooky, it paid off. I was faced with two freeways leading into town with 9 miles of exits and the one I chose came right down to the intersection of the first facility on my list, MedExpress. Well they gave me directions to their headquarters so they could distribute my brochures to over 50 urgent care facilities across 3 states. Can we have a loud SCHWING? I ended up finding my way to most of my other destinations the old fashioned way, Columbus style with a map, and was content with my success there.

Heading into the Pits, I mean Pittsburgh, a whole nother ball of wax. What a crazy lay out of a city. There is no direct route to anything. It takes at least 30 minutes to drive 7 miles anywhere. No offense to people who live there but, clean up your city. It was filthy. I couldn’t believe people were eating outside on sidewalks that were lined with cigarette butts. Gross. Two days there? Two too many. Camping now in a nice suburb near Ellwood City, but it wasn’t easy getting here. After my long day Friday as I headed to the campsite I arrived at a multiple freeway exchange and as fate would have it, I got on the wrong one. 16 miles later to the first exit I then ended up on a dead end road because they were rebuilding a bridge. That detour took me another 20 miles out of my way and what should have been a half hour trip became an hour and a half of bobbing, veering, dodging, in a too big vehicle on a too small road. I almost got down and kissed the ground when I got here. Oh yeah, and once again I’m wondering about the hypertension. Hmmm!

So now I am off visit Ellwood City, New Castle and dip back in to Ohio to visit the Children’s Hospital in Youngstown, among others and back into PA before my trek across New York, Vermont and New Hampshire. I guess I am kind of in disbelief at this point that I have made it this far. I guess that says something for my driving abilities and stamina.

Today is Father’s Day so I want to sign off by saying thank you to all the daddy’s, papa’s, grandpa’s, and fathers out there that watch over our children, love their mommies and stay strong through these difficult times. You are our rocks!

News14 Story

I contacted News 14 while in Charlotte and they did an interview on my last day in the city and it aired this past Sunday. Their station runs the lead stories every hour for 24 hours so it should bring about a lot of awareness for ALD and my mission. Here is a link to the story. Traveling the country…

For some reason I can’t put captions in with the pictures without it screwing up the entire post. So the first one is of a church smack dab in the middle of downtown Charlotte that I thought was quaint amid all the hubbub of the banking district. Second and third are sculptures at the park I mention later. The brick one has children camouflaged in the brick playing on the wall. Very interesting. And the skull, well that is quite interesting also. The others are of the weather which you will read about later.  

What a terrific couple of weeks I have had since my last post. Hit Charlotte and tore it up. Distributed my brochures to 52 facilities, an all time record for one city. In fact, I have been to 263 since setting out this year which will put me around 325 for this leg alone. The first year of my mission, in 2009, I only went to 600 facilities, but this area is so much more densely populated that I can sometimes reach 15- 20 in a day. 

On May 5th in Charlotte I picked up my friend, Kelly Smith, midday and she rode with me to several stops including the two Children’s Hospitals. Afterward I went to her apartment and met her husband Ant, whom many of you know through Facebook. He is an adult with X-ALD with cerebral involvement and just underwent a bone marrow transplant at Duke University Hospital in Durham in February. He has surprised and amazed his wife and his doctors with his recovery although he still has a long haul ahead. It is always so nice to meet up with other affected families along the way and I already felt like I knew Kelly and Ant as I have followed their inspirational story since last year.  

That evening I picked up my husband, Bill, at the airport and we had such a wonderful time together over the next 4 days. Charlotte really is a beautiful city and we were able to camp fairly close at the Fort Mill, S.C. KOA. We went to the annual Bourbon, Beer and BBQ (and cigar) Festival on Saturday and talk about free flowing booze! There wasn’t a very large selection of beer or BBQ, but every kind of bourbon imaginable plus vodka, rum, tequila you name it. In unlimited quantities. We have never seen anything like it. Since the light rail didn’t run to that event we drove the RV and so really had to pace ourselves. Amazingly enough we didn’t even see any really intoxicated people. They could never pull that off in Southern California, haha.    

Sunday we caught the light rail and went to Macs Speed Shop BBQ and it was hands down the best we have ever had. We shared a combo plate and sampled all the meats and even tried the fried jalapeno pickles. Yummy! Ribs were the bomb! We then went downtown and walked all over the place, trying to walk off all the calories from lunch. The architecture was outstanding. The Hearst building was awesome but too massive to get a photo that would do it justice. There was a 1 1/2 acre park amidst it all with fountains and scultures (see photos). Downtown Fort Mill was quaint and we went there for dinner twice. We also just spent time together cooking, playing Backgammon, and just hanging out at the campground. I made Bill a delicious Mother’s Day brunch on Sunday, LOL. They had a bar at the KOA that all the locals hung out at. We talked to a couple of the employees about my mission and they said they were going to hold a fundraiser. I haven’t heard anything since I pulled out Thursday morning, but they said I wouldn’t have to be there. We’ll see if they follow through.   

Bill flew out bright and early Tuesday morning (had to get up at 5:30) and I  continued my visits in Charlotte through Wednesday.  I had e-mailed News14 before I even got to Charlotte and they responded asking for my full itinerary while in the city, which I sent. However, I still had not heard back by Thursday morning so I called and lo and behold, they had me come to the studio that afternoon and they taped an interview. They were also interested in adding more to the story and wanted to talk to other affected families in the area so I of course gave them Kelly and Ants info along with another family who recently uprooted and moved from Oklahoma to Durham so that two of their three sons, all with ALD could go through transplant. Unfortunately, their oldest son isn’t a viable candidate because of progression of ALD before diagnosis. That family is a classic example of why I am out here getting this information in the faces, I mean in the hands of the medical professionals. I hope to hear from the producer at News14 this week to learn how the story is coming along and will keep you updated. I felt like it was the best interview I have ever given and I have high hopes that this will propel ALD into the spotlight it so drastically needs and deserves.   

Oops, almost forgot to tell you. I forgot my map with the original route in the RV over the winter and when I got it out to start working on my next leg realized that I had inadvertently changed the route which should have taken me to Children’s Hospitals in each of these cities, Greeneville, S.C., Asheville, N.C. and Johnson City, TN so I went back to the drawing board and added them and some other facilities along the way and I will now fly home from Charleston, WV instead of Pittsburgh. My updated itinerary is on the website blog. I just couldn’t see veering off my original goal of 215 Children’s Hospitals and it wasn’t that difficult to make the changes since I was still somewhat in the area. Plus if there is one thing I have learned since embarking on this mission, it is to be flexible.   

So my last night in Charlotte there was another severe thunderstorm warning and this picture shows the sky in the evening. I was woken up about 2 AM by what seemed like thousands of flash photographs being shot at the RV from every angle and a low steady rumble of thunder. Within minutes huge streaks of lightening were shooting from the sky and as I started to count them out to estimate how far away they were, CRACK! Ear splitting and way too close for comfort. I had the news on and they were saying stay low to the ground, away from windows and just because your cars are sitting on rubber wheels they are not a safe place to be. Oh great! Also that egg size hail and power outages were being reported across the county. Oh shit! Then a huge gust of wind blasted the RV rocking it back and forth. Oh @#$%! It lasted a while before moving out of the area and needless to say, I didn’t get much sleep.   

After leaving Charlotte I went to Gastonia and then back into South Carolina to Spartanburg where I camped for the night. No more storms but hot and 100% humidity. This is what the atmosphere looked like at 7:00 in the morning. Steamy, although quite cool at night. Down in to the 40′s actually. I am now back in North Carolina camping in Swannanoa, just outside of Asheville, and it is Sunday afternoon.  Tomorrow I will head to Johnson City, TN, Tuesday Virginia and West Virginia by Thursday afternoon. I fly home late Friday afternoon and will have a very busy and fun time with family and Amanda’s high school graduation so I probably won’t be posting again until I’m back on the road again, unless to announce the News14 story of course. I fly back out June 13th and plan to attend the ULF conference July 15-16 and the first ALD Collaboration meeting with many other ALD organizations from around the world in San Clemente July 18th. I will post my itinerary for the next leg as soon as it is complete. Thank you all for your continued support of my efforts. What a ride this has been and will continue to be until there are no more ALD boys slipping through the cracks!

I can’t believe I’ve been back on the road for three weeks already. I’ve been fighting a bug I must have picked up the first week out here and between that and the storms I’ve been fortunate enough to out run, I’ve been pretty drained by the time I park for the night/weekend. Hence the reason for no new posts until now. I’m so anal about them it takes me all day to do one anyway.

My family and friends started questioning whether I picked a very good time to start my journey this year and whether or not I should just come home for a while and let these storms pass, but actually had I not picked up the RV in Birmingham when I  did, there may very well have not been an RV to pick up. I’m sure you have all seen the devastation on the news. I had a few scares with thunderstorms and wind and over several days I would see on  the news that a tornado had touched down in an area I had just been the previous day. Three to be exact. But the scariest was when I stayed in High Point, North Carolina, No sooner had I set up for the night the tornado sirens started blaring and the park ranger came driving through to advise all campers to head to the bathrooms for shelter if necessary. Fortunately, the tornado watch was lifted about ten minutes later and downscaled to severe thunderstorms with wind, but that was a long scary ten minutes I’ll  tell you.

CALM BEFORE THE STORM?

This photo was taken just before the sirens went off. It doesn’t look menacing at all and that picture in my brain and what happened afterward kept me on edge most of the night. Thankfully I had cable so I could watch the news reports and follow what was going on around me. The next morning there was a tornado watch for Greensboro until noon which was where my next 14 stops were and only about 9 miles away. All morning it would go from perfectly calm to a 30 second torrential downpour and then just stop and get calm again, but within minutes the wind would start blowing a gale. This is what happens just before a tornado hits, the park ranger had explained to me the previous night, but fortunately one never struck.

I am now somewhere between Winston-Salem and Statesville camping in a great family oriented park. It’s off season but still pretty full. It must get nuts in the summer. They have 3 pools, a 25 acre lake with paddleboats and canoes, as well as fishing, mini-golf, movie theater and activities scheduled pretty much all day. I got a great rate of only $69 for all three nights. The regular rate is $45/nt. The weather has mellowed out and it has been quite pleasant during the day and a bit chilly at night. I am enjoying staying put for a few days and getting caught up on some much needed rest I’ve missed between storms and coughing fits.

I didn’t make it down to the laser light show when I was in Stone Mountain Park as I had mentioned in my previous post. The shuttle left at 4:30 and the show wasn’t until 9:00, almost my bedtime, LOL. I did drive over to check out the area on Monday and took this photo of the famous calvary carving in the rock.

STONE MOUNTAIN PARK IN ATLANTA

It was crazy to have such a seemingly remote park almost  in the heart of Atlanta. I was glad when I got through with my stops there and headed for smaller pastures, so to speak. Made mostly excellent contacts in Georgia except when I got to the Medical College of Georgia’s Children’s Hospital in Augusta. The poor woman working the information desk was just as exasperated as I was I think. Every department she called referred her somewhere else until we hit a brick wall with the marketing department telling her an emphatic “NO! Against our policy!” click. I was flabbergasted. That was the first time I never got beyond the information desk. I mean come on, a teaching hospital that has a policy against educational material. Not one to just go away with my tail between my legs I looked up the name and number of the admin. director of the hospital and called him several times but always got his voice mail. The following Monday I decided to leave him a message and he actually called me back. Hurray! Once he understood what my mission truly is about, he took notes and my website address to pass on to the head geneticist and medical director while I mailed him brochures for them to share with the staff. Success!

After Augusta I went in to South Carolina and it seems southern hospitality does not traverse state lines. At least for the first couple cities. I got my brochures distributed but most folks (receptionists) weren’t the least bit interested in how, why or what I was there for. I don’t really care so long as they get into the doctors boxes, but it certainly is more encouraging when people show some interest in the humanitarianism of my mission.

But, to make up for that the rest of the week I was almost treated like royalty. I’d enter a clinic  or a hospital and say I’m on a humanitarian mission and ask to speak with the office manager, administrative or marketing director, and would be told, “Yes ma’am, just one minute.” No one questioned my motives and everyone was kind of in disbelief that I was out here carrying on this mission despite all of these weather obsticals. So, so, so great when they truly understand the magnitude of it all.  

One evening I camped just outside of Lexington, SC at a quiet and serene park and caught this sunset.

Well, I am back on my journey and although I had been feeling much trepidation at the prospect of leaving the comfort of my home, my husband and my daughter in exchange for this tin box, I find that I have quickly eased back in to this life style. I did have a bit of a rocky start, however. Setting out for the first time of the year I had to check two cases of brochures plus my suitcase. Since I was traveling on Southwest my first two bags were free but the 3rd cost $50 which I would have spent shipping my brochures  anyway, so I didn’t have a problem with that. The problem arose after I was checked in I had to stand in a second line to pay the fee which took about 20 additional minutes to get through. Once inside the terminal I found the line to security to be at least 300 people long. I was sure I was going to miss my flight but alas, it had been delayed so I made it. That delay, however, made for a nervous flight into Las Vegas to catch my connection, which I too barely made. I had planned to grab lunch there but that didn’t happen and since the airlines don’t serve food on their flights any longer I went all day without eating.

I had decided prior to leaving home to stay at a hotel near the aiport rather than have to rush over to pick up the RV and then set up camping for the night after a long travel day and boy was I glad for that decision. I took the shuttle to the hotel and got checked in by 4:30 and still had to wait another 1/2 hour for their restaurant to open. I really could have used a cocktail too, but although the information in my room stated the bar opened at 4:00, was told it didn’t open until 5:00 either. The bartender was nonexistent until 5:30 so needless to say there were quite a few disgruntled hotel patrons besides myself. Once I had dinner and a glass of wine I retreated to my room and  turned on the news and learned of a severe thunderstorm advisory with wind gusts up to 60 miles per hour  in effect for the remainder of the night. I was again glad that I opted to wait to pick up the RV. Within the hour the storm hit and the intensity was quite nerve wracking. Several tornado watches came and went throughout the night so needless to say, I didn’t sleep very well. That was Monday, April 11th.

Tuesday morning I took a taxi to pick up the RV and was relieved to find it in one piece. I had to call AAA for a jump and noticed a few things had been knocked over from what I suspected was the wind, but other than that everything was peachy. The tap handle to the kitchen sink was lying in the sink, but since I was able to reattach it didn’t think much about it. I made it to all eight of my stops in Birmingham and was received quite well at all of them. Surprisingly so, in fact, which was so encouraging for my first day back in the trenches.

THE CALM BEFORE THE STORM!

Tuesday night I camped at this lovely place. After hooking up to the electricity and water I stepped inside tofind a geyser shooting straight up from the faucet and the tap handle lying in the sink again. Oops. I did not have the RV professionally winterized because it doesn’t normally get or stay all that cold in Birmingham, normally. So although I drained everything the best I could there was still water left in the sink lines, which apparently froze and cracked. I couldn’t hook up the plumbing until I got that fixed and was lucky to find an RV repair just a few miles from where I was camping. They installed a new, and better tap, for the price of the part and waived the labor fee. I was off and running again in less than an hour and headed to my stops in Pell City and Anniston enroute to Atlanta. I kept hearing reports on the radio about more tornado watches that seemed to be just trailing my route. Wednesday night I camped in the most run down park I have ever seen but that was the only place in miles to camp so I just bucked up and endured. This time when I hooked up my water it was dripping from the underside of the carriage so I got to spend the next morning in another RV garage. They quickly determined that it was now leaking from the bathroom faucet, which should have been checked out at the first place I went. By now the floor was saturated. All said and done, it was minor compared to what I thought it might be which I was thankful for, although it now put me a half day behind schedule. I still managed to visit 5 facilities before heading to Marietta to camp for the night. It was quite a bit out of my way but I didn’t want to stay in the hell hole I stayed in the previous night again, so it was worth the drive, traffic and all.

Atlanta is so huge. I had no idea although I was here a few years ago for the American Academy of Pediatrics conference. On that visit I flew in, took a taxi to my hotel and just walked between there and the convention center so I never got beyond those few blocks. But now it makes San Diego seem small in comparison. I went to 10 facilities yesterday which included the marketing department for Wellstar Medical that runs numerous hospitals and urgent cares and employs many pediatricians and they are going to distribute my brochures to them all. Other facilities have offered to scan my brochure and e-mail it out to all of their department heads, put it on their website and have them available at their health fairs. I even met with the admin director at the Cumberland Kaiser Permanente Medical Center who took enough brochures to get to all of the physicians at the center and then personally escorted me to the parking lot. I hope the whole trip continues to be so successful.

Now I am camped for the weekend at Stone Mountain Park in Atlanta. There were more tornado warnings all night again with several touching down in counties that I had been in over the past week including Marietta where I had just camped. It poured with serious thunder and lightening which kept me glued to the news all night but we never got the high winds, thankfully. Today the sun is shining (although it is quite brisk) and should continue to do so for at least the coming week. My life is not boring, haha.

I’m glad to have the weekend to rest up, get some housekeeping and laundry done and enjoy the park. Tonight there is a laser show over the lake. I’ll spend Monday and Tuesday in the Atlanta area and then head eastward toward South Carolina with many visits between here and there. So Ciao  for now.

Well, the holidays are over and the new year is quickly unfolding and I realize I will be back out on the road again in a mere 3 months. Whew. So much preparation to get accomplished quickly. I will pick up where I left off and where the RV is in storage, in Birmingham, Alabama and then head in to Georgia and then continue north over the next 6 months. Once I get the next leg of my journey complete I will post it on my website and once I am back on the road I will continue to update this blog. I hope you all had a fabulous holiday and that this new year keeps you safe and happy.

LENOIR DAM IN LENOIR CITY, TENNESSEE

Okay, so where was I? … Ramble, ramble… Oh yeah, I forgot, Chattanooga. Pardon me boys, is that the Chattanooga Choo Choo, Woo Woo. On track 89… Oops, I digress. I forgot to mention in my last post that after numerous attempts to get the media’s attention in Tennessee, I decided to hold a “Sit In” at the Children’s hospital in Knoxville until they came out and covered my mission. Jamie, my friend, a mom of an ALD boy and herself a symptomatic AMN female, posted it on Facebook for me because I wanted to be able to present a list of ALD families that I represent to the media. I got a lot of support and have over 50 families with over 100 relatives affected on that list now. I contacted the marketing department there hoping that they would perhaps help me get the connections I need, only to discover that they were already holding a press conference the same day I was going to be there, for a donor who had just made a large contribution for their construction project. Not wanting to steal any body’s thunder or make a nuisance of myself, I abandoned that idea. That doesn’t mean, however, I won’t revisit it at a later date, at another hospital.   I went through a few smaller towns on my way into Chattanooga. Hit that city hard with literature. Barged into the UT College of Medicine and threw around a name I came across on their website and was escorted back to her office. She listened intently and then offered to take my brochures and get them to ALL of the Department Heads. I could’ve kissed her, but she was a little stiff, albeit helpful. Her office was located across the street from the TC Thomson Children’s Hospital. Got some literature in the hands of the director of nursing education there and she suggested I take more brochures over to their human resource director, which I of course did. So, very successful visits in this city.       

GREAT TRANQUIL CAMP SITE!

I crossed the tip of Georgia and made a quick trip to the single Family Practice office in Trenton and continued on into Gadsden, Alabama where I spent a lovely, relaxing weekend on the Coosa River. Sunning, sipping Margaritas and feeling really proud of my accomplishments so far. Something I hadn’t really allowed myself to fully acknowledge before, since this entire undertaking has been on uncharted territory. But I do know now that I am making a difference. Don’t applaud, just throw money. Haha!   

You can’t see too well from the small photo but there is a dock with adirondack chairs and right by the bumper of the RV is a picnic bench and a swinging chair. Because of the time of year it was very quiet. I did some work too as I needed to be thinking about putting the RV in storage for the winter and getting a flight home. It turned out to make more sense, financially, to fly Southwest out of Birmingham so I remapped my trip to end up there rather than Montgomery. That also gave me a couple weeks to contact the Children’s hospital there and see if their marketing department would help me out with the media. I’ll let you know how that goes. I’ve talked with a woman there a few times and she gave me the name of a producer at FOX who does a morning show for whom I have left a message with my information. Let’s hope she calls this Monday.  

BETTER SHOT OF THE DECK AND RIVER...OOH-AAH!

So after my lovely attitude adjustment weekend I drove down to Montgomery, about 150 miles south. Midway through the drive my AC starting making a really bad noise so I did without the remainder of the day. It was 98 degrees out, ugh, not to mention the humidity! Not long after I got in to town I drove past a CBS television station. I proceeded to have an internal argument with myself for about 5 blocks, whether or not to even bother going back. My alter ego won, so I turned around and went inside. They actually ended up doing an interview but I’m not sure if it aired or not. I didn’t see the news that night, although I stayed in a hotel because there was nowhere to camp without driving 20 miles out of town and the hotel was only $20 bucks more. Just got in too late to catch the news. The next day I stopped at a garage in Selma where they discovered my fan belt had disintegrated and was stuck in the pulley, which was causing the screeching sound. The owner was super nice and checked things over and assured me a belt would fix the problem. He didn’t have access to one until the following day so I decided to wait until I got to Meridian, Mississippi. I found a garage in the yellow pages that sounded like a winner. The ad read “If we can’t fix it, it ain’t fixable.” They were awesome. They found a belt in town, had it delivered and put it on in 20 minutes and that did the job. BUT, they also smelled gas under the hood and after some investigating showed me where a leak in the carburetor was. Yes you heard me right. The same carburetor that had been worked on by four different mechanics last year. There was a steady drip, drip, drip, drip, drip. I couldn’t believe how much gas it was losing. They said if their wife were driving it they wouldn’t let her leave the garage. I certainly didn’t want to blow the RV (or myself) up so took their advice. Once they discovered exactly where the leak was, it was just a matter of fixing it, right? Wrong. Well, apparently the last mechanic that adjusted the carburetor put a little too much torque when tightening the plugs and broke the O-rings inside and instead of doing the proper thing and replace them, he patched over them with some gunk that breaks down over time when in contact with… drum roll… yep you guessed it, gasoline! Hmmm, wonder if it was the same garage that patched the crack in my rear gas tank. Scratch, scratch. I ended up having to replace that too, after the patch disintegrated. It took the better part of the day for them to bore the plug out without damaging it, replace the O-ring and then patch it with some good stuff and I didn’t get on the road until 3:00. But I was chillin’ with my AC by then. All was good. I was scared the bill was going to be exorbitant because they had 5 hours of labor in it but because of my mission and my good looks, LOL! they gave me a break and it was only a little over $300. Most shops charge $110 an hour for labor on RV’s. Still managed to hit all 5 stops on my list before five o’clock. Fortunately they were all in a short distance of each other.  The next day I went to Jackson where I encountered something I had never seen before. A Medical Mall, complete with Heart Center, Cancer Center, doctors offices, education center, shopping and restaurants. Kinda cool, kinda weird. It’s a part of the University of Mississippi Medical Center. I met with the director of continuing education there where more doctors and students will now have access to ALD/AMN information. To bring you up to date, I went through Ridgeland, Madison, Canton, Winona, Eupora, and  Starkville yesterday. A few offices here and there have shuttered or moved but in one day I drove to 20 facilities, (5 closed down)but still breaking my all time record.    

CAMPING NEAR COLUMBUS, MISSISSIPPI

This brings me up to date where I am now camping near Columbus, Mississippi. My last weekend before wrapping it up for this year. I am in yet another lovely secluded campground on a river. It is massive. But again, because of the time of year, nice and quiet. There is a hiking trail that I took a walk on today that lead me to a real swamp.  A first for me. Whilst (sp?) walking around I encountered an Armadillo. The first one I’ve seen that wasn’t squished on the side of the road. At first, I thought, take a picture. But when I stopped walking it sort of shuffled toward me and I kind of freaked. I mean, I’m out here in flip-flops, bare ankles, by myself, and I thought it might charge me. Bite me? Who knows. And then my imagination got the better of me. Swamp. Crocodiles.  Okay, hikes over. My visits in Birmingham will be monumental in several aspects. 1.) I lost Sawyer 7 years ago on September 30th and will be visiting the Children’s Hospital of Alabama in Birmingham on that anniversary with the hope of preventing other families from losing their boys because of  ignorance on behalf of their physicians. 2.) I will have visited nearly 1300 medical facilities, many of them teaching hospitals and universities, who have now added ALD/AMN education to their curriculum. 3.) Travelled across 32 states over a remarkable 24,000 miles by myself. I guess you can understand my sense of accomplishment. I wasn’t sure how this would pan out when I dreamed up this idea 2 years ago and I certainly had no idea that it would be such an enormous undertaking. Especially since my original goal was a meer 215 Children’s Hospitals. LOL! I can’t thank ya’ll  (What? I’m in the south) for your support and encouragement.