The other day I I was thinking about this blog and realized it's been awhile since I had updated it. I didn't realize how long it been until I pulled it up and saw that had not been updated since late 2016. North Lot is happened in almost 2 years but I will do my best give a brief rundown of some of the more memorable points.

Christmas was a non-event for me. Holidays don't mean a whole lot to me much anymore but I'm not sad because of it. Since I'm away from most of my family I just don't get happy at holiday times. That's about the change but I'll give you more information about that later.

In February of 2017, my friend Allen Mabry and I took a road trip to Southwest Texas to do some geocaching and seeing some interesting sites. And some point maybe I'll be able to link some photos but I'm going to have to wait on that a bit. We drove out west towards Alpine, Terlingua, and ended up at Big Bend. While near Alpine we attended a star party at an observatory which is incredibly cool. I wasn't sure I'd like it but Allen told me they were interesting so I agreed to go. Geocaching was a bigger part of this trip and we put a lot of miles on his Subaru to get to each and every one of those. We only spent one day in Big Bend because we had so much to do. It seem to waste to pay $25 to get in the Park Drive around all day and then leave but what we saw and what we did was fun. While we were in Big Bend we crossed over into Mexico from the official border crossing station in the park. If you want an idea of what the experience is like, listen to the song "Gringo Honeymoon" by Robert Earl Keane. The only difference between what happened in that song and what happened with me was I did not go with my wife but with a good friend of mine. However the majority of that song was what happened during that day. We crossed the Rio Grande in a row boat, had an old man escort ice into town on the back of donkeys, we had cold beer in the shade, and had a good time. It was my first trip to Mexico and only lasted a couple of hours but I can't complain.

In March of 2017 I attended the Texas Challenge which is a geocaching event/ competition for the entire state of Texas. It was held in Tyler Texas in 2017 and the team I'm associated with one their fifth straight title. I did not participate do my failing Health but I had a good time than the last. I met several new people, had some great food, and made some good memories. That was my last geocaching outing.

In April 2017 I started working for a new company called dxc technology. If you're not familiar with the company they are the Enterprise services division of Hewlett-Packard Enterprise combined with CSC also known as Computer Sciences Corporation. The transition from one company to another was awkward and painful at times but we finally managed to get through it.

In the middle of May 2017 I went on disability due to my continuing battles with ALS, also known as Lou Gehrig's disease. I was becoming so weak that just going from my truck in the parking deck to my desk fatigued me so much I had to rest 20 minutes before I can start work. I was on short term disability for 6 months and then in November of 2017 I went on long term disability. Stop driving in June or July of 2017 and due to lack of strength and my concern that I would not be able to control my truck safely anymore.

There was a lot of problems to deal with regarding my transition to disability but we finally got everything organized.

At the end of November 2017 I received noticed that I was being laid off. I really didn't think much about it because I've been on disability and knew I was not going back to work. I was going to continue to draw disability until they asked me to retire. That never happened and my last day of work for dxc technology what is December 1st. Or so I thought. In January I was wondering where my severance check was and I was told that due to the fact that I was on medical leave when they laid me off that my layoff was deferred until the one year anniversary of me taking disability. That meant I had to wait until May until I got my severance check. Or so I thought.

May roll around and there was no severance check. June rolled around and there was no severance check. I contacted my old boss and let him know what was happening and after a week and got back to me and told me, in a nutshell, that they forgot about me and then they said that I was not actually laid off like they told me initially. I didn't understand what was going on but a couple of weeks later I was told that my last day of work would be July 13th 2018. This was called at administrative termination and I would get the ability to maintain my benefits at company cost once I left. About 2 weeks after I was terminated I received my severance check. All is well and good. Or so I thought.

Right after I was terminated I received it in the mail telling me I can continue my benefits but the prices were insane. Health, dental, and vision insurance we're going to run $1,500 a month. A few days later I received another packet in the mail telling me I can continue my life insurance that I had through work at approximately 5 times the cost that I was paying through work. Since I didn't have any life insurance on me I went ahead and and got one quarter of the coverage I used to have paying a premium for it. Since I have ALS there is no way I could pass a medical exam so I opted for the non-medical questionnaire coverage. I knew it was going to cost more but what choice do I have? My wife and I diligently filled out the paperwork and mailed it in. A couple of weeks later we received the statement and we paid it. Well it's not the big chunk of change I had when I worked but it's better than nothing. At least when I die my wife will be able to pay off the house.

Then something very interesting happened. Yesterday when we check the mail it was a bill from dxc technology for benefits. I was very confused so I called the number talk to a very polite lady who explained to me that my coverage was being continued if I wanted to pay the premiums that were sent. When I looked at what the premiums were, I couldn't believe how inexpensive they were. Mind you I'm not getting right Medical coverage with this but I have Medicare as my primary so at least I have something. However my old life insurance policy, the total amount that I had available when I work, was part of this package. The total package cost only $20 more a month then just the life insurance policy I bought by itself. And that policy is only one fourth of what the company would allow me to have. Plus I would get medical, dental, and vision coverage as well. The only bad thing is they won't cover my wife so I need to get an external policy to cover her. However she's not a big fan of doctors so I think what I'll probably gets just something to cover catastrophic.

And that leads me up to the final point. I said earlier that I really wasn't a fan of holidays because most of my family is not in this area but that was going to change. Well at the end of next month, borrowing any problems, I will be moving back to West Virginia to live with my mom. It's not the ideal situation considering she 78 years old but she is in pretty good health. I have a sister, her husband, and her two kids that live just down the street. Both of those kids are adults now and are pretty responsible even though one of them has autism. Also my son lives in Pittsburgh which is only a couple of hours away from where I'll be living.

Now to get the awkward part out of the way. My wife will not be joining me on this trip. Right now it's just me and her living in this house in the Dallas area. We have no other family here. We don't belong to any one Church so we don't have a support system in place to help out with my care. If you're unfamiliar with the type of care person like me needs, it is what they call custodial care. There is no cure for ALS and the disease is degenerative. As things get worse I will need more and more help on a daily basis. As it is right now I can't walk without the aid of a Rollator and my core muscles are so weak that I'm hunched over as I'm trying to walk. I spend the bigger part of my day and a recliner but I should be in a power chair to allow me Mobility. Right now I am able to get up on my own and make it into the bedroom or make it into the bathroom without any assistance. However that will change and someone will be needed to pick me up and move me to those locations. Custodial care takes care of that but it is expensive. Custodial care cost $300 a day, $10,000 a month, $120,000 a year. I realize most of you are not math Majors but if you're living on disability those costs are not reasonable. Generally people with ALS depend on family and friends to help out. We have friends but most of them work full time and really can't help out like we would need them to. While the option to move me West Virginia is not ideal, it's better than my wife attempting to take care of me by herself. For those people you don't understand how much stress a caregiver goes through, it is a huge burden for one person to carry. Since my wife is my caregiver that mean she can't get sick or get hurt. If she does or no one to take care of me. I have lost all dexterity in my hands and have to use voice commands to use my computer. With the aid of a strap able to feed myself but it's not pretty. The really sad thing is that mentally on the sharp now as I've ever been but my physical condition is deteriorating at a pretty rapid pace. Well my mother will not be able to do this on her own at least there are other people who can assist. I got a couple of cousins that I am trying to reconnect with that hopefully we'll be able to lend some Aid.

I'm not going to lie to you. The thought of putting Mike are in the hands of a 78 year old woman is a little frightening considering she could hurt herself at any time and I would be in the same boat as I would be if my current caregiver, my wife, suffered the same fate. The only plus is the fact there are other people that can assist.

That being said my wife is going to stay here and live in Texas well I live in West Virginia. It wasn't my first choice and I'll be honest I was not happy about it initially but I understand it's probably the best thing at the moment. My wife and I have had our issues and she's done a good job at taking care of me so far despite the fact that we've had these issues. Matter fact I'm pretty surprised she didn't leave me a few years ago when we ran into a really rough patch. I guess that says a lot about her.

 So, to those people who know me and are reading this, do not judge. It might get to the point where my wife decides to sell the house and come join us in West Virginia. It's not her Jam and I don't expect her to make the trip back up for good but you never know what's going to happen. She's going to be busy trying to take care of this house on her own and I'm sure I'll be answering questions all the time.

I don't know how many of you that read this are Christians or have any type of spiritual life but I would appreciate any prayers and positive thoughts you can send my way. People who know me know I am not the type to ask for sympathy, but I don't mind a little compassion. This is going to be a tough transition as I have not lived in West Virginia in about 30 years. It's going to take some adjusting to living with my mother in a very small cottage with one bathroom. She's never been one to really like the Finer Things in life and to be honest I like nice things every now and then. I'm going to miss a lot of types of food that I've been able to get while living in Texas but on the bright side, at least I'll get some of my mom's homemade pepperoni rolls. That's almost worth the trip back in and of itself.

I'm not sure when I'm going to update this again. People that know me can find me on Facebook. I'm going to make a public announcement on Facebook next month to let all my West Virginia friends know that I'm coming back.

It Is Getting Harder Every Day

Each morning I wake up at 5 AM, take my ALS meds (with no way of knowing if they are helping or not) and head into the master bathroom to get my shower and brush my teeth.  Like most men, my hygiene time is generally less than most women (I don't have to put on makeup, fix my hair or apply oils/lotions to keep my skin soft) but lately I see that time increasing a bit more each day.  Getting ready to leave the house is progressively getting harder each day.

I like long, hot showers but now the amount of time spent in the shower is not because I enjoy it, it is because now it just simply takes me longer to perform the action of getting clean than it did a year ago.  The scary thing is that it is only going to get worse.

For the past year and a half or so I have not had much use of my left hand for fine motor skill activities.  I have compensated by using my right hand more but now I am noticing that is is beginning to fail me at times, mostly in the morning, when it is cold, or when I am hungry.  I cannot even button my jeans in the morning anymore. Usually by 9 or 10 AM (once I have had some coffee and some food) I can but I run the risk of not being able to unbutton them while I am work.  If I wore my jeans "baggy", I could probably mitigate the problem a bit.  I normally wear a 32x32 and moving to a 34x32 does not sound all that appealing but I will do what I have to do.  I guess I need to research to see what kinds of pants are available for people in my situation.

Humbling.

Found this web site.  Looks promising.

Rough Night

Rough night last night for me.  Even though I had a glass of tonic water before I went to bed, I fought cramps all night long.  I slept but it was fitful.  I was up 2-3 times in an 8 hour period and was woken up with cramps twice that number.  I don't feel very rested.

I am beginning to feel this condition more and more.  Heck, I did not even want to walk much last night, even though the rain had stopped.  Anyone who knows me knows I love to walk and I just did not have the desire to yesterday.

Really Feeling Run Down Lately

I have noticed over the past two weeks or so that my energy level is pretty low.  I wake up sore and tired which is the way I go to bed, most of the time.  Most of it is my back and I have been having general back issues for years...they are just worse now.

I have been trying to walk some each day (down to a couple of miles each day now instead of the 3-5 I used to do) with half of that at lunch and the rest as soon as I get off work.  It is a slow walk, playing Ingress along the way (care to become an agent?  Send me your e-mail address and I will send you an invite.) I don't have the energy anymore to go at it like I used to.  I guess this is just the way things are going to be from now on.

I have also noticed that my right hand is starting to exhibit the same behavior as my left one did a few years ago which is now causing me problems getting dressed.  Buttons are much more difficult for me now as are laces.  I can usually still manipulate them, but it takes longer to do so.

Typing is a chore so I am now either voice dictating or using the "hunt and peck" method, which is slow and tiring.  Using voice dictation at work is not possible all the time due to the close proximity of the other cube dwellers in the office so I am hunt and pecker most of the time.

I set my sister up as the trustee to my Google data which was a lot less painful than I had thought it would be.  I had hoped to do the same with my Microsoft data but they do not allow that, so I will have to move any important data over to Google while I am still able.

I realized the other day that I still have 2.5 weeks of vacation left that I need to take before Jan 1, 2017.  I hope I can do some long weekends from here on out but I need to verify that with my manager.  My desire would be to take Friday as a vacation day but I might switch that to Monday since nothing usually goes on for me.  I will still be available if something important comes up.

I received notice yesterday that I have been summoned for Jury duty in November.  It has been a while since I have been summoned and even longer since I have served.  I am kinda hoping I am chosen.

Is It Really Mid October and If It Is, WHY is it still 90 Degrees Outside?

Autumn is my favorite time of the year.  Harvest time means cooler temperatures, fresh apples (pie, cobblers, CIDER, etc), pumpkin EVERYTHING (that can be a bad thing...really), long hikes and camping.  Well, normally it does.  Right now we are flirting with 90 degree daytime (70 degree at night) temps and it sure does not feel like harvest season to me.  Hopefully that will change in a week or two.

I wrote to my sister the other day and in doing so I guess I caught her off guard with the content. My sis and I are not super close (we text and e-mail as well as yearly visits) but our relationship is light years ahead of the one I had with our brother. It still pains me that we never were able to reconcile but I did try... however, I digress.

Sis wrote me back today, obviously a bit shaken by the tone/subject of my e-mail.  In a nutshell I asked her to be the caretaker of my Google and Microsoft accounts and to make a "final"post on my Facebook account when the time comes.  There is a lot of data out there in the cloud and I had hoped she would agree to be the administrator of that data.  Long story short, she agreed and asked that I do a couple of things for her, which I will most certainly do. We are family.

I really hate to dump more on my sis...she has a lot on her plate:  Married, children (one autistic), full time job, manages my mom's medical issues, has her own health concerns to contend with, lost one brother to cancer a few years ago and now stands to lose another brother within the next 5 or so years due to one of the most EVIL conditions a person can be diagnosed with, ALS.

I continue to have good days and bad days.  Overall my energy level is much lower than it was a year and a half ago (I ran a half marathon in the spring of 2015 and did damn well for a sick dude...just a little over 2 hours for 13.1 miles) and while  my left hand has always been severely compromised, my right hand is now beginning to give me more trouble.  I am having difficulty  with a lot of day to day tasks but so far I have found a way to perform them.

I also finding myself getting "weepy" more often now.  Sad thoughts will cause my eyes to well up (like right now) with tears and I have to really pull myself together just to appear normal.  It just ain't cool for a 51 year old man to being streaming tears at work.

Work still weighs heavy on my mind as the pending merger gets closer and closer.  If I survive the layoffs I will be part of a new company, which will mean I have unwillingly changed companies 3 times in the past 14 years due to outsourcing, spin-offs, and mergers.  It gets harder to do my day to day work if it involves much typing due to the decreased mobility of my hands.  Company disability is becoming more and more appealing but the thought of living on ~70% of what I earn now is frightening.  Things are tight now...on disability they will be almost unacceptable so I keep plugging along hoping for some  miracle of finance to appear :)

I do a lot of voice (THANK YOU GOOGLE!) typing as well as "hunt and peck" typing which is not fast but it allows me to continue working.  The down side to that is my hands are so tired by the end of the day I cannot hold  much.  I am not complaining...just stating a fact.

Welcome to "the new normal" of my life.

Health Update / Fun and Games

It has been a while since I have done an update to this blog, so I thought I would do a wrap up to bring everyone who stumbles across this up to speed. I'll be using Google Voice to dictate this since my typing has become worse over time due to whatever malady is affecting me.

As an update, a little over  a year ago I was diagnosed with ALS, also known as Lou Gehrig's disease. Getting that diagnosis was very troubling and I have to admit that I was in a bit of a funk for a while. However after a few months I began to accept it and decided I was going to enjoy things more and more. Fast forward to March of 2016. My neurologist decided to change his diagnosis from “ALS” to “unkown”.  My neuro has stated that my progression has been much slower than he had anticipated and right now the affected regions of my body are limited to the left side. With that information he was beginning to think that maybe it was not ALS but possibly something known as multifocal motor neuropathy.  MMN  Is an autoimmune disorder that does not have a cure, but can be treated. The treatments are insanely expensive and need to be administered in an infusion center once a month. My neurologist set up  an appointment to begin the first treatment about 6 weeks ago. Then one month after the initial treatment I went on my second one.   For anyone who has not had to endure autoimmune therapy before, it is not pleasant. The infusion meds, in my case Privigen, have a history of giving the recipient massive headaches, flu-like symptoms, nausea, and other allergic reactions. These are the common side effects. Sometimes with drugs I skip the side effects all together but with Privigen I get them all :-) Generally speaking the rest of that day I am completely useless. Not that there's much of the day left, considering infusion therapy takes about 6 hours and that does not count my drive time to and from the center in Dallas.

So, with those two treatments under my belt, I am not sure I feel any better but I certainly do not feel worse. As a matter of fact usually the day after my procedure I feel pretty good but that is a short-lived pleasantness.    Once day two hits,  I am back to my normal imperfect self.   I will get one more infusion treatment before my neurologist sees me again to make his evaluation of the therapy. The IVIG therapy I am receiving is about 70 to 80% effective in patients with autoimmune disorders. There are more effective drugs, but their side effects are extremely severe. Most of these treatments are anti-rejection type drugs and you have to take multiple other drugs to counteract the side effects of those.

So to make a long story short, I am no closer to knowing what is wrong with me than I was a year ago.

My most prominent symptoms:

* Cramping

* Muscle twitching

* Muscle atrophy in my left hand and arm

* Loss of fine motor function in my left hand

* Fatigue

Seriously, I am in bed each night by 9:30 unless I have had any caffeine later in the day. I have had to hire people to mow my grass and do other manual labor as I am just too pooped to do it. I still walk each day but I am very tired by the time I get home.

Since  I do not know the extent of my  illness, I decided to do something for myself a couple of months ago. A buddy of mine and I drove out to Roswell, New Mexico on a bit of a geek  pilgrimage. I've always wanted to  go there and my traveling companion Allen, enjoys taking road trips through New Mexico (he has family in Albuquerque) so he was a great logical choice. Long story short, we spent a lot of time Geocaching on the 4 day Excursion.  I will admit that it seemed like the bigger part of this trip was geared towards more Allen's desire to hit specific geocaches and since I don't geocache as much anymore it wasn't as important to me as it was to him but I had to admit some of the places he led me to were pretty cool. We headed out into the desert, drove up on the top of mesas, and headed out into some pretty out-of-the-way places. I have a few pictures that I will cherish because it is something one does not get to do all the time. I cannot complain about the time spent. I really enjoyed myself.

One of the things I wanted to do while I was in New Mexico was play Ingress outside of my home area but I did not get to do as much of it since Allen's agenda was different than mine. I guess I could have been a little more forceful about it but he is not an Ingress player and I was not able to convince him into getting started so it would have been a little selfish of me the to spend hours playing  Ingress since only I would have enjoyed it. With the geocaching it was something we both can enjoy.  Who knows one of these days maybe I'll go back and the trip will be all about playing  Ingress :-) HAHA.

The local Ingress scene has been pretty interesting as of late. One of the more prolific players in the area passed away while he was traveling in Japan. He was  one of the enlightened agents, so he was part of the opposing faction but none the less we mourn his passing. There was an agreement made, which I found out a bit too late,  to keep his portals alive in his memory. The only problem was that other people started taking advantage of this and started creating strong fields knowing that the resistance would not touch those portals. I got a little angry and told a few players that I have no problem keeping his memory alive but not at my expense. So I targetted in a couple of the portals people had been building on and took them down. I did however leave two unmolested in his memory. I am an Ingress  Player but I am not heartless.

With that agent no longer around as part of the opposing faction, several areas are less active than they used to be and that means my portals and fields in those areas stay up longer than they used to. Many areas are still hotly contested, especially the one across the street from my house. We have three or four resistance agents who constantly work on keeping the park as blue as possible. However there are a couple of opposing agents who come in there everyday to do their share of damage. I am not sure what they gain out of it because what few AP  they get by destroying a few fields, I easily triple by rebuilding it when I get off work.  If the park is completely blue and I do not need gear, I will use the Ingress intel map to seek out anchor portals to collect as many points as possible and disrupt the enemy. Last night two Anchor portals netted me over 40000 AP.   Not bad for a few minutes work.

A young couple who work in our building on the janitorial staff recently started playing Ingress as well. We have taken them under our wing and help them out with as much knowledge as we could impart on them.  Paul and his wife are very nice people and I enjoy talking to them when I can. They live close by and only play Ingress in a very limited area so we try to give them every benefit that we can. Paul recently reached level 8 and is no longer a Smurfling.   I used to think I was a pack rat with gear until I saw his reserves. He is a smart player and saves a lot for a rainy day.

I received a bit of a disappointment the other day as a couple of my Guardians fell to an opposing agent over the weekend.   I actually was very surprised they lasted as long as they did considering they are right by a busy road but stranger things happen. Unfortunately I do not have any other candidates for Guardians at this time. The Enlightened are pretty good at hunting them down. Hat's off to them.

A guardian badge is something everyone strives for but it is very difficult to get the Onyx level Badge. I am currently working on my Trekker Onyx badge  and it is possible that I will get it by July. if that holds true then all I need is about 10 million more AP to get to level 16. Getting  to level 16  is my short-term goal, with my long-term goal of being able to collect a platinum badge for every category.   I am already gold in most categories and platinum is just the next step but it is a big step. A few of those will be hard to get.

Many players do not concentrate enough on collecting badges, they are simply content with walking into an opposing factions area and destroying portals, which is fine if you have no strategy involved and all you like to do is disrupt things but to each his own, there is no one way to play this game. Different people have different ways of enjoying themselves and if being an anchor killer is something you enjoy, then I suggest you keep doing it. However do not complain that you're stuck in  that level 10 or 11  when you have the points for level 12 or 13 but not the badges.  As I explained to my friend Paul you have to plan ahead for your  levels. I was able to plan ahead until I got to  Level 13 or so, then I had to work hard to get the badges I needed to go  further.

I had to laugh at my friend Wayne the other day. He is convinced on of the local Enlightened Ingress families is cheating because they always seem to have so much high leveled gear. I told him that I did not care if they cheated or not and that if he wanted to get ore high level gear, all he had to do was hack more. Wayne's Ingress playing time and areas are pretty limited but to his credit he can do a lot of disrupting when he puts his mind to it. He only needs to hack and Glyph hack more portals.

Speaking of glyph hacking, a couple of months ago I finally started glyph hacking and after some practice I am getting fairly good at it. I am almost at my gold badge thanks to a plethora of level 6 and level 7 portals in the area. I have to admit it is nice getting lots of gear from each portal I hack!

Not Much Has Changed

I know, it has been a while since my last update.  I have had a lot of things going on so now that things are simmering (not at a rolling boil) I figured I can make an update.

First off, we (me, wife, newish dog) drove the Taco to the pan handle of Florida for a week of leisure. The location was more for my wife than it was for me.  I like the mountains (you can take the boy out of WV, but you cannot take the WV out of the boy) but the wife likes the salt life so once a year she goes and sometimes I go with her.  A few times over the years she has gone with friends.  Suits me fine.

The week was nice overall.  We were 3 miles from the closest anything (food, entertainment, shopping) and 20 miles from our favorite places to eat.  I was glad I took my bike because not only was I able to keep up with the company sponsored fitness challenge, but I could do some Ingress (what little there was on the island) at the same time.

The trip was a chance for me to try out two new items I purchased on Amazon.  The first and most important was a tonneau cover for the Taco.  I picked up a tri-fold cover for $200 shipped, which was $50 cheaper than I had seen it before.  This was a different brand but  the reviews were all good.  It worked well enough but there is small gap in the back near the glass that caused some water to get in under the cover but it was minimal.

The second item was a bike mount for my mobile phone.  Playing Ingress on my bike is fun but without a mount, it is dangerous.  I have already wiped out once because of this.  The new mount worked very well and holds my Moto G quite securely.  The only complaint I have is the side mount blocks the "down" volume key but that is a minor issue.

The dog did well on the trip, mostly.  She became figitity after a few hours of driving so we had to stop to let her stretch her legs.  A few times she tried to climb up in the front seat,  which was dangerous but my wife,who was not driving at the time, took care of her.  The dog finally began to enjoy the water after only 3 trips to the beach.  She is a hound and we were not sure how she would adapt.  With no place to let her out to do her business, I had to walk her every time she needed out.  It was not too bad but she got me up most every morning at 4 or 5 AM to go out.  I just took my meds, grabbed my phone, a poop bag, and a flashlight (it is dark at our end of the island) and headed out. The one good  thing about the 4 or 5 AM nature call was I could sneak up and hake the portal that was just inside a private area.  During the day, if you crossed the line a guard in a nearby guard shack came out an ran you off, politely of course.  At 4 or 5 AM, it is too dark for him to see anyone 50 feet from his well lit shack, so I did my hacking there at those hours.  I have held that portal for about 3 weeks.  I am hoping to make it 60 days.  Mostly likely I will not, but I can dream.

Almost all  the Ingress portals on the island were in the center and we were at the farthest west public  part of the island.  Any further west was  private.  The far east end of the island is a state park with a few portals but since you have to pay each time you enter the park, I just stayed  out.  Only a small number of portals are there anyway.

So I hopped on my bike each morning and rode to the center of the island, hacked, linked, upgraded, and fielded the portals then rode home, putting in about 10 miles or so each morning.  Those rides, plus the ones I did at home (planing Ingress in evening in the town where I live) allowed me to meet my fitness challenge for biking (240+ miles for the month).

The food we had on this trip (mostly lunch since it was a little less expensive) was OK but not as good as I have had in the past.  I never had the chance to eat any scallops (my fav) but I did have some baked oysters a couple of times.  As a matter of fact, I had seafood every day that week.

Ingress Update:  I am at Level 11, with 6.6 million points.  For the first time since I started playing this, I am short  both points AND badges to level up again.  I currently need two more Gold badges and it looks like unless I either field and link like a madman or I go in search of a lot of new portals, it will be months before I level up again.  This folks, is where it starts getting hard.  I have reached Silver in almost all badges (that I am not already Gold or Platinum in) but I am quite a ways off from getting those two more Gold.

Since I have been busy with work, a week long vacation, a weekend camping trip, and other things, I have not been overly active on the weekends like I normally am.  I noticed a few of the other agents in the Resistance have started working in my neck of the woods,  which I am sure is driving Hockey Family crazy.  A large part of the city is blue and it appears the Hockey Family is fighting hard for a few portals nearby.  I can see HockeyMan does a lot of work south of us, where he works but I don't see any real farms (of any high level)  there.

Our little L7/L8 Cemetery was taken down again the other day.  What I find odd about that was it was not linked/fielded up so the toads would have to waste a lot of get for little return.  I usually avoid taking down farms that don't have links/fields because of this but maybe the people who took it out were bored.  They did not link it up and they did not defend it well so I am not sure of the reason  to take it out.  I had a few L6 XMP's to spare so I unleashed those to kill some resonators (working for my badge) but left it mainly untouched.  Hopefully the people who took it out will continue to battle for it...I could use the points.

One nice thing about my vacation was it allowed me to farm a lot.  I am not sure why but when I farmed lower level (3-5) portals, I got a lot of shields and a surprisingly large number of AXA's and ADA's...enough that I have been using them to flip portals instead of wasting my supply L8 XMP's. There have been a couple I have flipped more than once, simply because I can.  I will slow down when I get low, which might take a while since I have accumulated so many.

I have been farming as much as I can and hacking any portal that I come across, even if it is low level.  Farming nothing but high level portals only gets you high level gear and believe me you will want some L4 Reso's if you run out!  I am currently holding on to several L3 and L4 reso's to help fill our portals.

The biggest surprise for me was all the MUFG containers I have gotten in the past 3 weeks.  I had (at one time)  11.  I know it is just a random chance but it sure has been interesting.  Of course I just recycled most of them...how many can I actually use?

My  ALS has not been bothering me much but my hand is getting weaker and I noticed my left leg slightly give out on me when I tried to run across the street.  That was a little scary but I did not fall.  I just stumbled a little and recovered.

Well, the hand is tired so  I need to give it a break. 

Look! A post that is not dedicated to Ingress (well, much anyway)

Work.

At the time of writing this (Sept 11, 2015) I am 50 years old (as of last month) and officially have been in the workforce for a little over 32 years.  The first 10 or so I was a blue collar worker and it agreed with me for a time.  But eventually I snagged a white collar job working for a regional cellular provider in a shirt and tie (!) environment and have been white collar ever since (with the exception of some white collar side jobs taken to make additional money).

After 32 years of working 40+ hours per week, I have really started to think what retirement might look like.  I have colleagues who are retiring (some by choice, others not so much) and seeing people I care about moving on is somewhat sad.

Now to be honest, the odds of me being able to retire are not all that great.  Regular readers/stalkers are aware I have been diagnosed with ALS (I am not going to rehash a previous post...you can look it up and educate yourself if you are unfamiliar with ALS), and barring a few exceptions, my chances of living another 12 years (age of early retirement) are pretty slim.  Statistically,  I should not expect to see my 55th birthday,  which is far below retirement age. No, I am not dwelling on the thought of dying, nor am  I seeking to garner sympathy.  I am just stating a fact.

The fact is I will collect disability far before I can retire.  Disability will not be fun as it pays ~70% of what I earn now and my retirement funds are not stellar (although I am ahead of many I personally know).  My quality of life (and that of my wife, who is 3 years my elder) will change as the money flow slows down and the expenses increase.  Thankfully we are debt free with the exception of the house.

The current work situation has made me question the timing of my taking disability.  Work is stressful (I am pulling double duty right now with job roles) with ongoing projects that constantly clutch at me.  If not for Ingress to help me blow off some steam, I might go mad.

Contract issues, employee issues, contractor issues, PO issues...the list goes on.  Most of it was caused due to a desire to cut costs but the repercussions have been greater than expected.  Since the man who was  dealing with a large part of this has taken another role within the company, not on this account,  I was asked to fill it on an interim basis.  That was supposed  to be a 30 day window but it is looking more and more like 90 days.  I turned down the role because I am formally in a global process related role and dislike the regional politics the role I am filling in for seems to be stuck in. I have been asked by at least two managers to reconsider but I am just not sure I need the added stress. My neuro certainly does not think I need to add to my plate.  He feels I should be cutting back some. While I am still very physically active biking (yes Hockey Family, that was me the other night :-) ), walking and using an elliptical  machine at work, added work stress will not help me any as I manage to live with the early  (slowly progressing) onset of ALS.

On to other subjects.  I like TV.  I like discovering new shows.  I usually take recommendations from colleagues and friends but somehow I seemed to miss "Mr. Robot" on  USA.  DAY-UMMM, that is an awesome show (well  at least  episode one was.  I hope to see more soon)!  I was bored and came across the on demand listing for it and gave it a shot.  I was not disappointed.  Christian  Slater is not all that great but the lead character is.  Interesting story line!

Well, now that Hockey Family has found my blog, I guess I will no longer be discussing Ingress strategies here.  I can tell from the past few nights that the family has changed their tactics some by seeking out high point link anchors.  Good job on making the switch.  Smart move.  I will need to adjust mine strategy as well but Wayne, the guy I geocache and sometimes Ingress with will not change his style, so he is on his own,

Wipeout!

I had a wipe out today on my bike.  I was trying to dodge some glass (at a very low speed, at that) and lost control on some gravel.  I cut my eyelid and have some severe road rash on the back of one of my ears. Other than that (and a sore wrist on my ALS affected hand...I am wearing a brace right now) I am fine.  I need to get my new tires on my bike since the old ones are so old.

And yes, I was doing some Ingress but that is not what cause the spill.  I would serve me right if it did but I was going slow and not even looking at my phone...it was in my pocket...for once :)

Living with ALS - The Early Stages

It has been 7 months since my official diagnosis (and a year since the preliminary diagnosis) and I thought I would post an ALS update.

To date, the only issue I can detect is  the loss of a larger percentage of my fine motor skills in my left (non-dominant) hand.  Everything else appears normal, or a reasonable facsimile thereof.  I have been asked several times what that means, exactly.  Well, the best way to describe the loss of my fine motor skills would be to have you put on a heavy winter glove on your non-dominant hand and try to do simple things like button a shirt, zip a zipper, open and close a zipper baggie, tie your shoes, or fasten your jeans.  It can be done but you will have some difficulty.  Since I cannot manipulate small objects, I have to adjust, which is like learning to do it all over again.

I have ZERO pinch strength in my left hand causing me a lot of issues when I have to grip things with both hands (like a zipper baggie, or tear open a bag of chips).  I tend to use my teeth as a substitute for my left hand when I can (sorry Dr. Weyandt) which speeds things up but if what I am doing is for someone else, they probably should do the opening.  Also using my left hand for washing is cumbersome and awkward without the coordination I used to have

My hand grip is limited but is still useful with the aid of  multi-tools/pliers which are quickly becoming my friends.

Typing has been reduced to a lot of improper form but fortunately I don't have to type a large amount each day.

All that being said, I feel good overall.  My sleep schedule has been altered but that is only because our new dog wants to go use the bathroom at 3 or 4 in the morning and since I get up at 5, it really does not pay to try to go back to sleep.  I end up getting pretty sleepy by 9 PM and rarely do I stay up past 10.

90 Days and Still Good

I am happy to report at 90+ days of being on Riluzole that my liver appears to be in good health and the meds have not caused any damage that the doctor can detect.  Also the meds have yet  to make me sick.  I am however a bit fatigued on some days and I am usually in bed by 9 or 9:30 PM!

Labcorp, Where for Art Though/Here Comes the Rain Again...

After and insanely wet (and record setting) spring here in North Texas (NTX), Tropical Storm "Bill" will be making landfall shortly and is expected to drench us with 2-5 inches of rain.  If it was going to happen I wish it would have happened last week.  I need to get my neighbor's grass cut before I hit the road on Saturday and from the looks of things it might be too wet to cut before I leave and that will be bad.  All that water and the heat we have already been seeing (mid 90's each day) will create a humid environment just perfect for the grass to take off.  Good news for the grass seed we just put down but bad news for my grass cutting.

As previously posted, I need to go to Labcorp each month to have blood tests performed to make sure the Riluzole I am taking does not destroy my liver.  Each month a couple of days after the blood is drawn, the results are posted online.  Last month the results never made it online but were sent to my doc so at least he knew what the results were.  After opening a case with Labcorp the results were posted and due to the way the e-mail was phrased I don't think they ever would have shown up had I not contacted them.  Oh, my liver function is still within the normal range, although it did go up a few points.  Nothing to fear.  I can still continue to take my meds.

I also now have my meds send directly from my Insurance company to me every three months.  It is $10 less than the cost of going to the local pharmacy (I use Walmart normally because they are close) and they are shipped free.  The drawback is someone needs to be here to sign for them.  Normally that is not an issue because my wife is home but sometimes that is not always the case.

My wife did some pet sitting last week.  The three legged monster known as "Spunky" spent a week at our place and for the most part was very well behaved. He is an attention fiend and since he did not get as much from us as he normally gets from his owners, he began to act up the last three days he was with us.  He began to whine at night when we put him in his cage (he was fine the first few nights) and then began getting into the potted plants my wife has in the open dining area.  Spunky is now home with his people and our house is back to normal.

Saturday I start my  road trip to visit family and friends on/near the east coast. It is an aggressive itinerary, with stops in 4 states over a 2 week period.  I am staying about a week in WV with mom, visiting family and childhood friends.  Then the following week I am driving to VA to spend a few nights with one of the first people I ever met when I moved to NC.  He and I have been friends as long as we have known each other, which is over 20 years.  I don't get to see him very often but since I have been diagnosed with ALS and he is a good friend I wanted to do everything in my power to stop by and see him at least one more time.

After a short stay in VA, I will cruise down to NC and try to meet up with another friends and former roommate if time permits.  Then I am off to GA to visit a former classmate and coworker whom I have not seen in at least 20 years.  He too, has graciously opened up his home to allow me a good night's sleep while on the road.  Not only is this a money saver, but it is safer and more comfortable. It will be so nice to see everyone again.

My TV watching has tapered off quite a bit with my DVR almost empty with sole exception of the year+ backlog of Cutthroat Kitchen episodes my wife has not watched yet.  I recently started recording "Texas Rising" and a new mini-series on AMC about the American Mob.  It started last night and runs for 8 episodes.

I am quickly losing my love for the Game Of Thrones TV series.  maybe I am just too much of a book purest but the show just does not do anything for me anymore.  I tore through the books at a frenetic pace, much like I enjoyed the first 2-3 seasons of the TV show but now my desire for the show has waned greatly.  It still is visually stunning but the story arcs are not what I want to see.

30 days - Liver Function Looks Good

I just received my results from the first liver function blood test, which has to be done every 30 days to make sure the Riluzole is not destroying my liver.  The results were basically the same as the "baseline" score that I received prior to taking the drug.  The liver function test has three parts and they were all normal.  One score went up by one, another went down by one, and another stayed the same.   It appears all is well as they are all within standard parameters.

Just Not In The Mood / More Rain

I am going to be honest and say that I have not been overly motivated to do much of anything lately...well at least the last two weeks.  I am not really motivated at work and that is partly because my global manager has been on vacation and not available for input on a project he has me working on.  He says that I can pretty much do what I want but I am not feeling very inspired.

Even something that I love, geocaching, has not provided much joy to me as of late.  I admit the weather has been wet (a bit of an oddity in Texas) and I am not a fan of tromping around in the muck to look for Tupperware hidden in the woods.  Normally, my wife has trouble keeping home and away from geocaching but lately I can't seem to get motivated much to leave the house outside of going to work or the story and an occasional walk  or yard work.

I am sure this is due to my near constant reminders (cramping, twitching, hand claw) of my ALS. These symptoms appear to be getting worse.

I have my annual vacation/trip back home scheduled in late June.  I am going to take two weeks this year (a first for me) and visit an old friend in Virginia on my way back.  On the way up I hope to take a longer route to allow me to drive through some states I have not been in before and hopefully (if my interest returns) get a geocache in each one.

I am dreading the thought of telling mom of my diagnosis. While she is a strong woman I am not sure how she will handle the news.  My sister seems to have taken it well enough but I know that at some point the reality will sink in and she will break down some.

My wife is still strangely neutral regarding this.  I realize part of that is the strained marriage we have had over the past 21 years but I would have expected at least something from her.

I am still taking my meds and that reminds me that I need to pick them up from the pharmacy on my way home.  I was hoping to mow grass but the 20% chance of rain has turned in to a full morning of liquid sunshine, soaking the ground again.  That means my already high grass will get much higher before the rain lets up and it dries up enough to cut, which should be Sunday at the earliest, if the current forecast holds true.

Perfect Conditions for a Race

As things turned out, it was a great day for a race.  It was in the mid 50's when I woke up and it was in the low 60's by race time.

I woke up feeling pretty good (no aches).  I got out of bed and took my meds immediately, since I have to wait an hour before I can eat and I should eat 1 hour before the race.  I dress, limber up, stretching a bit while nervously pacing.  I brush my teeth/rinse my mouth, check e-mail and the weather forecast for the millionth time.  All is looking good.  I get a text from a good friend in Richmond wishing me luck.  It is nice to be thought of on race day.

After an hour I eat a Clif bar (I love those things) and drink a little water.  I did a good job of hydrating the week before so I should be fine during the race.  I make a final trip to the bathroom and get my running belt (really just a fanny pack/bum bag) before heading out to the truck.

I arrive at the race location in Fairview, TX (just a few minutes from my house about 40 minutes before race time and it looks like 75% of the runners are already there.  I start nursing my Vitamin Water (Citrus flavor with caffeine) slowly, prepping my body for the run.  I mill around a bit and get a text from my runny buddy, Tom. He has arrived and is near the start line.  We meet up, discuss strategy and decide to run with the 2:15 (2 hour, 15 minute) group.  Tom can go faster but he has decided to show solidarity by running my retirement race at my pace.  I just hoped I could keep up.

The last 15 minutes go by very quickly and before I know it we are moving.  I am 60-80 feet back from the starting line and once I cross it I start my fitness app "Runkeeper".  Tom and I are on our way.   The initial swell is difficult to navigate as some of the slower runners are in the front, hindering the faster runners from getting into stride and position but after .25 miles or so Tom and I are in solid with the 2:15 group.

As we run we notice the 2:10 is very close to us and that means someone is off.  I check our pace and it appears the 2:10 group is a little slow so we push towards them.  This course shares some of the route as "The Showdown Half" that is in October which I ran last year, but where The Showdown starts off mostly flat for the first 4-5 miles, the Fairview Half starts off with a slow down hill and then over rolling hills, a long mild uphill grade, then more rolling hills towards the finish.

At mile 2 Tom takes a Race Selfie (called a "runfie") with me in it as well.  It is still early and we are both smiling.  We continue on and our pace stays pretty steady at just under 9:30/mile ... not blazing fast but I am not an athlete.  If I can keep this up I will be sitting on a PR (personal record) but we still have a long way to go.  I eat one of my Muscle Milk Energy chews  and do so each mile until mile 8.

Somewhere around mile six (and before the halfway time check) I begin to feel my left ankle throb, which is normal with the muscle mass I have lost in it. Right now the only loss I can tell is in my left side. I am determined not to let the ache and later pain keep me from completing this race as strong as I can.

Near mile 8 I can tell that I need slow down to a fast walk.  Tom jokes that I walk almost as fast as he runs at this point so he cannot really walk to keep up with me so he slows his running pace down some.  I walk 75-100 meters or so and start running again.  I do this again at mile nine and at mile 10, where Tom takes another "runfie"  of us.  During mile 11 and 12 I walk 2-3 times per mile.  At one point during mile 11, my heart rate skyrockets and I know I have to walk.A couple of younger ladies catch up to me at mile 12 and motivate me to keep going.  I start running again.

The Mile 13 marker is in sight but it is long mild uphill climb still, as it has been for the past mile or so, and I want this race to be over.  My ankle is killing me and my energy level seems low (I really did not train for this race like I should have) but the finish is just about 600 feet away.  I soldier on. The shouts of encouragement from Tom's friends and even those I do not know give me the final push to cross the line, being aware that  I need to cross the sensor strip to get my time counted.

As I cross the line I see Tom ahead of me and I have kept him in sight the entire time so he is about 45 seconds ahead of me.  I get my finishers medal and unlike last year, I manage to gather up all the snacks I can (choco milk, water,  mini bundt cake, banana, etc)  before exiting the corral.  Tom and his friends meet up with me and we pose for pics.  We chat and I go sit down.  I must look rough because Tom asks me if I am okay, and I assure him that I am (I really am. I felt much better at the end of this one than the last one because I was able to walk a bit each mile during the last 1/3 of the race).

When we go back and check the scorers table, I see that I ran a 2:07:13, which is only 30 seconds slower than my first half marathon that I ran in Oct before I had any issues with ALS symptoms in my ankle, so I am pretty stoked about this.  I still finished in the top 1/3 of all the runners...nothing to be ashamed of.

A sit and rest a bit more (while playing with a Golden who is adorable and still very much a puppy despite her adult size) then head back to the truck, talking to runners as I get ready for running errands and chores.

All in all I ended up vacuuming the house and mowing grass that day as well.  Needless to say I slept very well that night.

This is most likely my last half marathon.  I feel blessed to have been able to finish it at all.  I know that my ALS is still in the early stages but it did have an effect on me.  I know that had I been 100% I could have broken the 2 hour mark for this race (or maybe the next one), but I guess that was not in the cards.

No worries...I have still done something not many people have ever done and that was compete in and finish (reasonably well I might add) in two half marathons...both when I was 49 and at least one of them while experiencing ALS symptoms in my ankle.

Go me!

The Race Must Go On

I have been actively following the threat of severe weather that was predicted on the day that I have planned to run my last half-marathon and I am happy to report that while rain is in the forecast, it appears it will not materialize until late afternoon or the evening.  The race will go on.

I picked up my race packet yesterday and like the previous Fairview Half Marathon, it was pretty skimpy.   There were a few coupons, an Emergen-C packet, and some fruit flavored gummy candy  but other than one of those drawstring bags you can wear as a backpack, there was nothing else other than the obligatory Race Day Shirt, which I have to admit is nicer than some cheap unisex cotton tee shirt that you see at some events.  I realize part of this money goes to charity, another part goes to the finisher's medals (which are gawd awfully big this year) and I am sure the rest to admin costs but your would think that sponsors would like to give out something of interest.

I just chucked the coupons since they were for places I cannot afford to shop at anyway.

I got home an my wife seemed rather perturbed that I had entered another race, or more accurately, had spent money on registration.  Yeah, money is something we fight about.  I know she gets concerned and I can appreciate that, but I don't waste money and it is not too often I want to spend it on something for just me.

Initially I thought she was upset because hard physical exertion only exasperates the symptons of ALS but I soon realized she was mad because of the money I spent.   Honestly, this bothers me quite a bit but discussing it with her is pointless.  I will be wrong no matter what.  I realize that men and women view spending differently.  She feels I waste money on my hobbies (which to be honest I have cut WAY back on) and I think she goes overboard on "natural" and "organic" products fur us and the dogs (when they were alive).  Maybe we are both wrong.  I just wish we could meet someplace in the middle.

That reminds me of a joke:

If a man is talking in the middle of the woods and there is no woman around to hear him, is he still wrong?

Today was a workout day but since I have a race tomorrow I took it easy and only did elliptical at a moderate pace for 60 minutes.  Normally I go at it a little harder,  hitting at least 8 miles during that same 60 minutes but I scaled it back today clocking in just over 7.75 miles.  No aches, no  pains.  I will need to get a restful nights sleep tonight, get up tomorrow and take my Rilozole  at 5:30, eat something light at 6:30, make sure I have used the bathroom and have nothing left to surprise me later, leave the house by 7:00 and start the race at 7:30.  I live pretty close so this should not be a problem but knowing me I will be up a little early because I will not be able to sleep.  Nerves on race day are common.

I remember my first half marathon I was so tired at the end I do not remember them handing me my finishers medal and walked right past the post race refreshments, which were fairly nice (water,  chocolate milk, OJ, baby bundt cakes, bananas, etc).  My buddy Tom had to point them out to me.  I will try to remember them this time.  I will be hungry because I will have burned off close to 1500 calories during this race.

One of the funniest things about these races is that they are part fashion show as well as athletic event.  Some people get  into dressing up (one guy dressed up in a viking hat last time and some of the women were in multicolored neon clothing that just did not match but it was fun to look at) and it can be quite the attraction.  Some people spend a lot of money on running gear but I just run in whatever is comfortable to me...typically a technical athletic shirt and shorts.  I have an old pair of running shows I save for races because they are so comfortable.  I know I cannot work out in them every day (the padding is worn out) but they are just fine for races.

It is also quite a social event.  I noticed a lot of the people picking up their packets yesterday were driving very nice cars (Audi,  BMW, Mercedes, Lexus, etc) and it is all about who you are seen with for some people.  Not me.  While I know I will not place in the top three of my age/gender catagory, I go  because I want to prove to myself that I can do it.  This time I am a little more skeptical  since my symptoms have worsened since I  registered at the beginning of the year. I am sure I can finish it but I am pretty sure that it will be slower than last time.  I average a 9:44/mile pace last time and would have done a bit better had I slowed it down earlier and saved myself for the end.  I ended up walking some during miles 11 and 12...not a lot but some.  This year I think I will hang with the 10:00/mile crowd and if I do better, so be it.  If not, then no harm to me.  Last year I started with the 9:50  crowd and moved up to the 9:40 before I started losing steam.   I hope not to repeat that.

I am not a natural athlete.  I have to work to do as well as I do, which is not stellar by any means but I am proud of what I have been able to accomplish.  Besides, how many other people with ALS will be running this? ;)

Drug Report and Running in the Rain

I have been taking Riluzole twice a day for just about two weeks now and I am happy to report  I am still not experiencing any side effects other than the mild "itchy mouth" I get shortly after taking it.  Honestly the worst thing I have had to deal with is making sure I do not eat anything 2 hours before and 1 hour after taking the medication.

I have been communicating quite a bit with a friend of mine who lives in Virginia with his wife, dog, and a couple of cats.  He has been a good person for me to unload my issues on.  We trade e-mails several times a week and talk on the phone once in a while as time permits.  We don't talk as much as we probably should simply because when I am  talking on the phone with someone I prefer that call to be private and a lack of privacy is something I am in great supply of, at least for the time being.

Physically I feel mostly the same although I would venture a guess that my left hand has lost more coordination and typing is getting harder with it.  So far that is the only real issue I have noticed.

I have been get more frustrated with my lack of coordination each day.  Today my hand is unusually problematic, giving me fits with the buttons on my shorts as well as my typing.  I really have not been blue or depressed, "mad at God", or anything like that.  It is mostly just frustration.  I have a very active mind and to have my body not keep up with it presents me with a special kind of hell to live with.

I am scheduled to participate in the Fairview Half Marathon on Saturday,  which will be a real test for me since I have not ran more than  5-6 miles in one stretch in several weeks.  For quite some time my left ankle was giving me issues (I think I tweaked it) then after it started feeling better my heal started bothering like I had a stone bruise.  All that bit of injury has certainly affected my cardio and/or endurance to some degree so I am pretty certain my time will be much slower than my last (and my only) half to date at 2:06:42 ... I am expecting a closet to 2:20 time but will certainly welcome something faster.  The weather forecast is not looking too good at the moment with a 40% chance of rain on race day and a high of 76.  Around race time it ought to be about 60% which will make for a cool, sloppy run.  Ought to be fun. 

So Far, So Good and How Do You Really Feel?

As previously mentioned I was cleared to start taking Riluzole to slow down the progression of my ALS.  While at this point I have only taken 2 doses, I have not experienced the side effects that I was fearing I would have, namely the nausea and drowsiness.  Since Riluzole has to be taken on a empty stomach, I was concerned I would be tossing my cookies the first day but I did not experience any nausea at all with either dose.  I am currently taking it at 5:30 and 17:30 each day which works well enough for me.  I'll admit that waiting for dinner an extra hour sucks but it is only an hour and maybe I can be productive in some ways during that time.

Most of the time I do not read the drug info that is available online but with Riluzole I did.  In the US it is only used officially for ALS but the wiki page indicates it has been shown to have antidepressant properties as well.  The wiki also states that it has been shown to show promise in treating (not curing) Alzheimer's Disease.

It will be interesting to see I gain any benefits  from the anti-depression properties of this drug.  While I am not suicidal by any means, I have had a couple of "dark days" since I have been diagnosed and anything that would limit those would be welcomed.  Nobody enjoys being in a funk.

I have been asked how I feel about the whole ALS/mortality thing and to be honest I think I am dealing with it pretty well.  I am sure many people who have been diagnosed initially panicked and later became depressed or withdrawn and I understand that.  I have been accused (and maybe rightfully so) of being a worrier but I think that over the years I have mellowed a bit.  Maybe it is all the time (17+ years) I have spent in I/T...God knows that will either make or break a person.

When I was told I had ALS, I did not panic and I think I was more numb about it than anything else.  I know that talking about it helps.  Some people prefer to keep it private and I completely understand that but I am bit different.  I want to prepare people for what will happen.  I am not a huge fan of surprises which is why I have read as much as I can on this disease.  My biggest complaint (other than the fact that I have something that has no cure) is that I do not know how long I have left.  There are so many things I would like to see, so many places I would like to go, and so many people I would like to see again but I have no idea when the final buzzer will sound.

Well, all this has given me some desire to hunt down a few people I have not talked to in a while.  I think I will look online for them!

More Kudos for Tom, Damn, My Hand is Looking Skinny, and Cleared to Take the Meds

I just received an e-mail from my running partner, Tom informing me that he was a "lottery winner" in the Marine Corps Marathon.  This will be Tom'st first full marathon and the Marine Corps Marathon is not an easy run to be his first but I have the utmost confidence in him.  He has worked very hard on his running, conditioning and endurance so he will succeed in this endeavor.

I have no plans to run a full marathon.  As a matter of fact, my next one (the Fairview Half) will be my last one as I just don't think my ankle can take the pounding of distance runs anymore.  BTW, isn't that a gaudy finishers medal?

I was looking at my left hand today and noticed it really is looking quite scrawny compared to my right.  I can tell my grip is getting worse and my hand is tired well before the end of the day from the typing I do.

Also, after a lot of playing middle man between my neuro and the lab that did my blood work, I have been cleared to take Rilutek.  I will pick up the script when I get off work and start taking it immediately.

Let's hope the side effects are minimal!

Well, I Did Not See THAT Coming

I know it has been a while since my last post and to be honest up until now I have had nothing that I was interested in writing about.  However  some recent events have made me think that maybe I should start putting more thoughts down.

As of February 26, 2015 I have been diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as "Lou Gehrig's Disease".  Wikipedia has a pretty good article on it, although a lot of what I learned I have gleaned from University Medical Center web sites.

With that being said, 10% or so of ALS patients are misdiagnosed, so there is some chance that I have something else, however when you take the sum of the entire battery of tests I have undergone, the odds are not in my favor.  I have not however given up hope.

My Symptoms:

Loss of grip/pinch strength in left hand (the initial complaint)
Atrophy in left hand/arm
Fasciculations (left arm/hand, right arm/hand, chest, diaphragm, face)
Severe, intense cramping of hands, feet, arms, diaphragm usually after a stretch
Hyperreflexia
Fatigue

A few (2-3) years ago I went camping when it was quite cold out...near or below zero if memory serves.  I got up to take care of my morning constitutional and realized that I could not use my left hand to manipulate the button and zipper on my trousers, I had to use my right.  Now when it is cold, we all know that manual dexterity is reduced, but usually it affects both hands.  That morning only my left hand was affected.  I was a little concerned but after I warmed up, had some coffee, and ate some breakfast, my hand started working again.

Over the next year I noticed my left hand cramping up and at times, forming into a claw shape.  I then remembered something that my primary care provider told me once when I had mentioned to him I was suffering from cramps in both my feet.   He stated that when both hands or feet (legs or arms) cramp, it is almost always some sort of deficiency (vitamin, mineral, etc) but it it happened on just one, it was most likely neurological.  So during my next annual physical with him, I mentioned what was happening (by this time I had lost some coordination as well as strength in my left hand and the cramps were frequent) and he ran me through a series of physical tests and decided I needed to make an appointment with a local neurologist.

I managed to get the appt fairly quickly and told the neuro about my symptoms.  He did some physical tests and asked me a lot of questions.  After 20 min or so he informed me that he thought I had Carpal Tunnel Syndrome (CTS) and wanted to verify by running an EMG.  He performed the EMG and then concluded I had moderate CTS in my left (non-dominant) hand and mild in my right (which did not have any symptoms at all) and told me to wear a wrist brace on my left hand for 90 days.  I was a little surprised at his diagnosis since I did not have any tingling, numbness, or pain...just a loss of fine motor skills and some strength.  However I am not a doctor and I do not play one on TV so I did exactly like the neuro told me and for the next 3 months, I wore the brace on my left hand for up to 20 hours a day (I only took it off to run, wash dishes, and bathe).

After those initial 90 days I went back for a follow-up and he asked me how I was doing and I told him I thought the hand was worse.  He looked at it, ran the same battery of tests he did before, and asked me to wear it for 60-90 more days and come back, which I did.  This time I only wore the brace while I slept since that is when most people do the majority of the damage to their wrists (think about the odd angles your arms are in when you wake up).

After a few months I went back to the neuro and he again asked me how I was doing and I told him there was no improvement.  This perplexed him because he said that there should have been some improvement during those 6 months since it was not severe CTS.  He then scheduled a battery of blood tests and an MRI on my neck.  The blood tests would check for a variety of things and the MRI was to rule out a pinched nerve.

The results of those tests did not shed any more light to my situation other that I had some slightly elevated muscle enzymes.  He said that he wanted a surgeon to take a muscle biopsy (open, requiring surgery, not a simple needle biopsy) to see if I had some sort of muscle disease.  The arrangements were made and I had the surgical procedure performed.  They sliced open my bicep, removed a 2.5 cm wide 5 cm long sliver of my muscle and sealed me up.  A pathology was performed and the results, while inconclusive showed   "moderate deneravation atrophy" and "solitary degenerating myofiber with focal interstitial inflammation".  This neuro told me that in the beginning he was not overly concerned but after all the tests he was beginning to fear the worst and wanted me to see a Motor Neuron Disease specialist at UT Southwestern for a second opinion.  The specialist was not able to see me until early February.

When I was finally able to see the specialist (I was actually late due to traffic), I was given a thorough exam twice, once by the specialist and one by an med student who was interning with this specialist. I was asked a lot of medical history (personal and family) questions and was sent to the lab to get some blood drawn.

He told me before I left that while he needed the results from all the tests, it looked like I had either ALS or MMN (Multi-focal Muscular Neuropothy), which is an auto-immune disorder that imitates  ALS.  The specialist told me that what he was hoping for was to see a specific antibody in my blood that would indicate MMN.

The blood test results were completely normal and the antibodies he hoped he would find were not present but he still needed to perform an EMG to verify.  The EMG was scheduled for Feb 26th.

I arrive at UT Southwestern at the proper time (actually early this time) and they saw me right away.  I got into a surgical gown and they started the nerve conduction study which is not painful but a tad unpleasant and was not performed by the original neuro almost a year ago.  After that test was completed they moved on the the next phase.  This is the most unpleasant test I have ever had performed.  You can read the details here but the short version is that needles are inserted in the muscles to get a reading.  They tested my left hand, arm, foot, leg, and back.  After he reviewed the results he told me that he believed that I had ALS and wanted me to consider start taking Rilutek, which is not a cure but slows down the progression of the disease, giving me a few more months or years to live.

My wife knows, as does my sister and son.  My mom does not know yet, I plan on driving up to see her (she lives about 1200 miles away) and tell her in person.

I told my boss and a few close co-workers, but a few people overheard them so it is known my pretty much all the team by now.

I have also told a few good friends, one who I think took it harder than I did.  There are a few close friends I have not told yet and if you find out about this via my blog, I am sorry I was unable to tell you in person.  Nothing personal...I just have not had the time to tell everyone yet.

One ironic thing about this is that I was issued the ALS Ice Bucket Challenge TWICE when it was popular and I did not participate either time.

Now that you have the back story, the primary question that most people want to ask is "How long did the doctor say you have?".  That is pretty impossible to say.  40% of all people with ALS die within 3-4 years after diagnosis while only about 10% live longer than 10 years.

I have no idea where I am on the scale.  Right now I have full use of my arms and legs (even though the last EMG shows denervation in both) but my left hand is moderately affected, mostly with grip/pinch strength and coordination.  I can no longer button shirts/pants with my left hand and I find myself dropping things, much to the chagrin of my wife. My right side appears to be unaffected at the moment.

I am still working out (though I have not gone running in a couple of weeks because I tweaked my ankle) and I have a half marathon in about 3 weeks, although I am having some doubts whether I will be able to finish it due to my ankle/foot gets very tired/sore after 6-8 miles.  I have been warned that vigorous exercise exasperates the symptoms so my next half marathon will be my last one.  My racing days are almost over.

I hope to update this blog every now and then as things progress.  If you stumble upon this and have questions, feel free to e-mail me.

One last point.  A LOT of people get an odd symptom or two and use Google to research them only to get a diagnosis of ALS.  ALS is RARE.  2 out of 100,000 people a year in the US get it (statistically one other person in my city will be diagnosed this year).  There are a lot of diseases that in various stages can imitate ALS and most, if not all of them are treatable.

ALS  is not treatable in the sense I will be cured, but it can be slowed down.  Keep that in mind before you panic and assume the worst.

ALS (Amyotrophic Lateral Sclerosis) imitators:

Chiari malformation
Myasthenia gravis
CIDP
Celiac
MMN
Mitochondrial disease
Isaac's Syndrome/neuromyotonia
Charcot-Marie-Tooth
Multiple sclerosis
Guilllain Barre Syndrome
Heavy metal poisoning
Medication reactions
Post viral syndrome
Lyme disease
Fibromyalgia
Cancers of various descriptions
Kennedy disease
Small fiber neuropathy
Parsonage-turner Syndrome
Spinal disorders
Thyroid disease
Diabetic neuropathy
Vitamin deficiencies
Vitamin toxicities