ALS – Lou Gehrig’s Disease

Amyotrophic Lateral Sclerosis is a neuro-muscular degenerative disease. Since I was very young I was aware of neuro-muscular disease because one on my Mom’s childhood friends suffered from a non terminal disease. Mercedes was a very inspirational woman because even though she had an extremely difficult time walking and talking, she would go to school, take public transportation and was very happy. Only as an adult do I understand how many valuable lessons my Mom taught me about acceptance by making me always see people with disabilities as not a curiosity but something that I should see as normal. Most people with disabilities don’t want special treatment, they want to be looked as people.

I learned about ALS and how it deteriorates a body reading Tuesdays with Morrie back in 2004. I could have never imagined back then that the tears I shed reading that book would come back in the form of having to face that ugly disease by someone close to me having to deal with it. I am not ready to deal with it at all… I am however doing what I can to help my uncle on his journey.

I guess I have my own form of denial going on, because even though I keep on saying that there is nothing I can do about it, I am doing what I can. I will be taking him to his MRI and other tests this week, I am going with him to one of the best guys on the field, and I plan to being next to him every step of the way.

My wife is an advocate for diabetes. She lives with type II and does everything she can to help with awareness and spread the message. She is also doing great with dealing with her disease and also shares her journey. I have been wrestling with posting about this. My blog over the years has been about many things and not one thing at a time. I do want to become more vocal and make a difference when it comes to helping others with this disease. I want to use my experience with translation and interpreting in the medical field to do so… I want to give hope where there is sometimes so little.

I was very aware that one of the side-effects of “growing up” was having to deal with death and loss. There is also the weddings and births that make your life so happy, but dealing with loss feels unfair in so many levels. On my post when I read Tuesdays with Morrie the first time I wrote

“I am afraid of getting old, death is not really my biggest fear but more like not being able to take care of myself later in life.”

Having to see my uncle go through that same struggle that seemed terrifying is my head tears me apart inside.

It is hard to think of other things at the moment, so many other things seem trivial or insignificant when someone you love faces a terminal illness. Writing has always help me sort out my thoughts, and while I don’t plan on making this a journal of my experiences trying to help my uncle, some of it will spill into here. I guess its simply a part of my life, another chapter that I am not quite ready I want to close. Also don’t be surprised if I get completely goofy in the coming weeks, since that is one of my ways of coping, with humor… I never mean it to be disrespectful, again just my way to cope.

Where do I buy denial?

I still remember the first time I met my great uncle. I was about seven and very eager to meet the family that was in from the big USA for my Great Grandpa’s funeral. When I met my uncle and his wife I fell in love with both of them instantly. They treated me like an adult and wanted to hear what I had to say. She was a teacher and I still had not met a teacher I did not like. For the time they were down in Colombia I was their impromptu tour guide.

When it comes to mentors, my Grandfather is the ultimate one in my life, but my uncle has been also very important to me. He believes in worth ethic and being a provider for your family.

Over the years my uncle and I have had an amazing relationship. We are a lot alike. We have somewhat of the black sheep streak running through both of us. We both like to do what we want with our lives and love to be happy people. He is a lot more animated that I am (those of you that know me, know that I can get quite animated… multiply that by 10 and you have my uncle.) He was one of the only people that when I was not living in Chicago actually made a trip to see me both in Michigan and KC. He even spent a New Years a couple of years ago with Bea and I.

Last time I saw him before I moved back to Chicago I noticed that he was not as quick when he was talking. He has always been a fast talker. I also noticed that he was repeating stories, and that is just not something he ever did before. I talked to his wife about it and said that they should mention that to his PCP.

When I moved back to Chicago I went to visit him every single time I was around his house. Since they always spent weekends shopping I associated him not being home with shopping trips. I talked on the phone with him once in a while, and left messages, but did not think anything of it.

Before Thanksgiving one of my Aunts saw my uncle and said that he was in bad shape and had recently had surgery. I had heard nothing about surgery at all… I did not even know he was sick enough to require any kind of surgery. My Mom then talked to me to go see what was going on, and I went the next day. Sure enough, he had surgery but nobody in our family knew about it. He had kept it from all of us… and I understand why. He has always been a positive force, laughter, energy and he was simply mortified by the though of not moving around properly.

Back then the prognosis seemed to be a pinched nerve due to some pretty invasive arthritis on his neck. The surgery was supposed to free the nerves and make him regain the strength on his right arm which was really getting weaker. The surgery was a “success” but my uncle was not getting better. Initially I thought it was simply that he was not following his physical therapy properly, or that he was expecting results too quickly. However, I started to become worried… to me this seemed neither like a pinched nerve and his speech was getting worse.

Then things got more interesting and his wife had a mild heart attack. She is fine, but I think the shock of the whole thing finally made him realize that he needed help. He finally started letting family help him out, and me to actually go with him to see his surgeon. This is when I started to wish I was equipped with denial.

As his surgeon started to talk “at” him about his surgery and refer him back to a neurologist, my fear started to creep in. The doctor was baffled that what he did had no positive result. I was baffled that he was just not giving me much information other than details on the procedure he did. I started to catch more and more little tidbits about my uncle’s condition. Bilateral was the first, the second was lack of pain. Then it started to hit me that my uncle in a lot of ways his condition was a lot more serious than nerves simply being pressed by his spine. The doctor said something that hit him like a ton of bricks, there is more surgery that we can do; but the surgery comes with no guarantee of making you any better. Go back to your neurologist.

I made the appointment for the neurologist and thanks to a lucky mistake by me, we get in a lot quicker than we should have. My uncle starts to talk about hope for a simple fix, a pill that will fix him… I start to see more muscular deterioration. When we get to the appointment that attending does the initial consultation and checks him out. Everything that he is making my uncle do is making me nervous. I have asked my uncle to do similar things and his test are starting to shape my ideas into actual fears. I knew from his lack of range of motion that his shoulders were not responding to him at all. Also his posture was pretty bad and that part worried me a lot because its more than just the neck when your whole posture is not working.

When I had ear surgery they had to mess with one of the nerves around the eardrum. My doctor told me that I had an unusually long nerve and that he had only moved it aside during the operation but that I should be careful while it was healing and that side effects could mess with the tongue. I was able to talk no problem, but for a while it was almost like the wires for my tongue were crossed… sweet tasted salty. That is when I learned just how sensitive nerves are. Just moving them aside for a procedure could make toothpaste taste like a spoonful of salt.

The attending finished his assessment and we went to another room to see the neurologist. This is when things really became irritating. I am used to doctors really not thinking of people as humans but as “patients.” I am always aware of it, and I am thankful when I have found doctors that actual make human connections when they see you and not just look at the chart to see how they can “fix” you. The doctors started to consult with each other on my uncles condition and I kid you not, almost excited when the young attending identified the same things that the neurologist was. Don’t get me wrong, I understand they are there to learn; but what is happening to my uncle, my blood, its very personal… I think they should compare notes in another room or something… take care of the patient, explain things to him, don’t just “high five” each other over finding the right “hyper-reflex” on an extremity. The doctor continued almost like we were not there… only after I started to ask very direct questions did he actually notice again that humans were involved and they wanted answers. He said the word I dreaded most… degenerative disease… he wants to run more test, he won’t tell me what it is because he knows I will be looking it up.

Now I am the point where I could use a little denial. I don’t want to come to conclusions just yet, but my brain is already connecting many of the dots… heck it connected them long ago and I just did not want to share it with anyone.

I have sat with him often this last month, and I see in his eyes a scared child… looking for a word of hope… looking for comfort that I desperately want to provide… looking for answers that I simply don’t have.

All I have been able to say to him is that no matter what, he is not alone and I will be there for him. I will be there to help him in any way I can.

Wake Up People

I stopped writing about politics because most people are pretty uninformed when it comes to the subject. It is amazing how easily people turn into sheep because they prefer to listen to the talking heads on the T.V. and also like to get their morals from other people instead of thinking for themselves. I am little pissed off right now that most of the news coverage here in the US have already begun to paint Jared Lee Loughner as just some unstable person, a lone wolf… are people seriously that naive that they think hate speech and political stupidity don’t lead to these types of acts?

I am sad that I had to go all the way to the UK’s newspapers to get more information on the guy that shot an ELECTED OFFICIAL. Trying to get through the noise I gather that he thought our government was trying to mind control us with the use of grammar, and that our currency is bad because it is not backed by gold and silver. He was not only a right wing nut, he was also pretty scary to those around him.

Some people are so stupid to think that when they start talking about politics and using hateful speech, that people around them view them as someone that should be looked up to for what they believe. In reality, most people that see and hear that level of nonsense on someone put them in the “nut” category and start dismissing not just their political view, but pretty much everything they say. The moment that you buy into hate speech it is the moment that others disassociate you from intelligence.

I know a lot of very conservative gun lovers. I was sure that something this big will outrage them and make them denounce how horrible an act this is. Nope, they are pretty busy fearing how Obama is going to really institute big brother into our lives and maybe, just maybe he is the Antichrist and will be putting the mark of the beast in all of us.

Why is this making me so upset. While the congresswoman is fighting for her life, all I can think about is those six other people that are dead. Someone very dear to my heart is involved in the political process. If the headline was not in AZ but in MO, there would have been a chance that he was at a political event.

As human we are flawed because sometimes what does not affect us directly its missed by our radar. I have no idea how I would have reacted if my friend was amongst those shot. All I can ask is that people wake up, stop the hate speech and start really evaluating what is it that you are letting into your brain and promoting. Gun violence is sad as it is; but it is a sad day when your elected officials start getting shot.

End of a Decade

Death is one of the only certain things in life. I think eventually we might find a way to slow down time or even travel through it, that would be kind of cool… scary, but cool. Maybe it is having lost a couple of people recently, maybe it is the knowledge that I have just started to have to deal with death close to me and it overall just sucks, but is a reality.

Time is flying by it seems and I am not ready to lose those close to me. The thought scares me and even though I do seem to be able to function after it, I know the in the coming years I will have no grandparents left (I know a lot of people have already begun to lose parents or never even met their grandparents.) Still the whole death thing start to hit closer and closer.

I am not affraid of my own death. Maybe it is the whole dare devil, adrenaline junkie thing… maybe it is that I don’t fear the afterlife… not sure.

Death does bring clarity about life. The closer it gets, the more I realize that we need to really enjoy our life to the fullest. The more I read, the more I realize that those around us are the ones that truly shape our world view. My life continues to get better and better the more I surround myself with people that are not just happy, but willing to enjoy life.

This decade I lost my Grandfather, more recently I lost a very close Great Aunt. I also lost 3 friends and 3 other close friends lost parents. It is interesting to me that this is what comes to mind when I think of this decade. I guess this decade started to really educate me about loss.

I have never been a super fan of holidays and the whole present thing, and now that I know that people have lost loved ones around this time I even start to think of it differently. I think of the people that have to spend their holidays in a hospital taking care of a sick loved one, more than getting presents for people. I care more about the thought of loneliness that some people feel in their later years as I see elderly neighbors get visited very seldom.

This decade has also cemented my view that relationships is what life is about. The good, the bad, it really colors the paiting that it is your life. Laughter and crying being the soundtrack of love lost and found.

I do consider myself a very sucessful person, and once again all due to those around me. This year had a lot of tough situations, but having the people I do around me made it possible to stay sane. I also learned that picking up the phone to call for help should not be just a last resort, but standard practice because perspective is what helps control the inner demons.

This decade I met some wonderful people and my quest for amazing friendships got richer and richer! I will someday win the lotto and get you all in one room at the same time. That would be an awesome dream come true.

My Mom’s advice through the difficult times has been very simple. Don’t ask for money or happiness, ask for health and peace. If you are healthy you can earn, if you have peace you will obtain happiness. She is soooo very right. I don’t end this year with overwhelming happiness and expectations like I have in the past, but rather with a (to borrow from a couple of people :) ) self satisfied smirk. Years are making me wiser, my support system every growing and fantastic and the journey still in its beginings.

So to those not with us anymore, I hope you are waiting for me to join you someday hopefully not any time soon. To those still with me, lets try to see each other more in the coming years! (YeY Travel).

Too many projects, not enough time

Right now I have several things going on that I want to work on, but not much time to do it.

I have several posts that I have started but cannot quite get around to finishing.

I really want to do a podcast with Deguia again and discuss the book “The Road.”

I want to finish 3 books that I have started, and stopped either because I started during travel and forgot when I came back or I happen start another one.

There are movies coming out that I actually want to go see in the theaters.

I am looking forward to Turkey day and the holidays, but not the inches I am going to get from it.

I want to find a pool close to home so I can go do laps every morning… I miss swimming a lot.

I guess don’t mind me, just putting down some mental notes here… and this not even begin to include the work related stuff.

So what is going on with your brains?