In the Rime of the Ancient Mariner a man is doomed to wonder the earth with a dead albatross hung around his neck and to tell the story about why he has to do that. Family can be like the albatross hanging around one's neck. Fortunately mine are not.
I am the last of six. That doesn't make me the baby. It just means I was lucky enough to be so perfect that Mom and Dad didn't need to have any more. Okay that was a joke. Sort of. Maybe not.
Being the last didn't leave me many firsts to achieve. I followed all of my brothers and sisters through the same school system in the same home town. Tiny home town. We were lucky to see 1600 residents, if that many, when I was growing up. Staying out of trouble was never an issue because word would get back to my Mom and Dad before I even had a chance to think about getting home. Gotta love those towns like that!
School was another matter all together. My older brothers and youngest sister were all great scholars and students. By the time I rolled around I had not just big shoes to fill but you might say they were HUGE shoes. Bigfoot size shoes. (Does Bigfoot actually wear shoes? Another thing to add to my want to know list.) All before me were honor roll and Beta Club members. Here I am struggling to make it to the next grade without the stigma of having been held back. Flunked. Having to repeat a grade.
My brothers I especially looked up to. Two military veterans, one 4F because of a functional heart mummer. One civil engineer, one electrical engineer, one industrial arts engineer. A little intimidating isn't it? But I love them all dearly.
I spoke of not being able to achieve many firsts with them going ahead of me. I am now faced with several firsts that I am sure no one of them would envy. I was the first to have a heart attack. I was the first to have a stroke. I am now the first to have ALS and know that they will out live me. Pretty crappy firsts huh? I know this though, I will be waiting for them with cane poles and a big ole bucket of worms and the sweetest honey hole there ever was for bream and crappie.
I love you my family, more than you will ever know. I am sorry if I have ever been an albatross.
Until next time.....................
Friday, February 27, 2015
Pets and Friends
I didn't get to sit down and write last night because we had things to do and some shopping had to be done. Some times life gets in the way of me talking about it.
I have a pair of amazing dogs. One is a chi-weenie (half dachshund and half chihuahua), and the other a black and tan dachshund. Both were rescue dogs one from the local humane society and the other from a friend who had a friend that left her at his house. We have had them for about three and five years respectively. During that time they have trained very well as to how they want things.
I say that half way tongue in cheek but you pet owners know exactly what I mean. If they are used to doing something like riding to the post office for the mail, then they know when you start out the door to go there and insist on riding along. Non-dog owners will say it is all a Pavlovian response to stimuli. Pet owners know better.
There is a certain knowledge and aptitude that dogs and cats have that, at least I can't, cannot be explained. Take for instance the cat in the nursing home that sits and lays on the bed of the terminally ill patients that die soon after. Or the German Shepard in AK that led a state trouper to a burning house that the trooper could not locate. Once the trooper found the house he was able to save the people inside.
Another case was just recently talked about on FB where a man was going downhill rapidly from complications of Alzheimer's. He was checked into the hospital and his chihuahua was sent to a foster home. Both were refusing to eat and sliding fast. His last wish was to have his dog brought to him. When that happened both brightened up and started eating and regaining strength, physically improving. Thank goodness there was an administrator who had the gumption to bend a rule!
As you may guess our puppies are more than pets. They are friends. Friends who are there for us. Friends who are content to be close to us. Friends who know something is wrong but not exactly what. Friends that give us comfort and joy and laughter and so much more. I know this will be hard on them as well but we will make the best of it. Together. As friends.
Until next time.............
I have a pair of amazing dogs. One is a chi-weenie (half dachshund and half chihuahua), and the other a black and tan dachshund. Both were rescue dogs one from the local humane society and the other from a friend who had a friend that left her at his house. We have had them for about three and five years respectively. During that time they have trained very well as to how they want things.
I say that half way tongue in cheek but you pet owners know exactly what I mean. If they are used to doing something like riding to the post office for the mail, then they know when you start out the door to go there and insist on riding along. Non-dog owners will say it is all a Pavlovian response to stimuli. Pet owners know better.
There is a certain knowledge and aptitude that dogs and cats have that, at least I can't, cannot be explained. Take for instance the cat in the nursing home that sits and lays on the bed of the terminally ill patients that die soon after. Or the German Shepard in AK that led a state trouper to a burning house that the trooper could not locate. Once the trooper found the house he was able to save the people inside.
Another case was just recently talked about on FB where a man was going downhill rapidly from complications of Alzheimer's. He was checked into the hospital and his chihuahua was sent to a foster home. Both were refusing to eat and sliding fast. His last wish was to have his dog brought to him. When that happened both brightened up and started eating and regaining strength, physically improving. Thank goodness there was an administrator who had the gumption to bend a rule!
As you may guess our puppies are more than pets. They are friends. Friends who are there for us. Friends who are content to be close to us. Friends who know something is wrong but not exactly what. Friends that give us comfort and joy and laughter and so much more. I know this will be hard on them as well but we will make the best of it. Together. As friends.
Until next time.............
Wednesday, February 25, 2015
Stages of Grief
I didn't sit down and write anything on this blog yesterday because, frankly, I didn't feel like it. My attitude was bad and the cold weather had me down as well. A few years or even months ago I would have felt compelled to write even on the days that I was being negative. Now I have the freedom to not write.
I have been thinking about how some people have reacted to how I am "handling" things. I have been told I am courageous, an inspiration, a hero, some one to admire. I don't know. I don't feel like I am those things in particular. I just feel like me. Confused at times yes, but who is not? Concerned about my family, but who would not be?
Over protected at times, and yeah I like that. It means people are reaching outside of themselves to do a greater good. If this illness I have is going to have a positive result, then that is one very big positive. To reach outside of one's self to comfort someone is all too difficult at times, and inconvenient at other times. For those that try, they receive more self- and other-awareness that can only enrich their life.
One thing people tell me is inspirational to them is how I am handling all of this. To tell the truth I am not sure how I am supposed to be handling all of this. I am kind of an armature at this dying thing you know. I haven't found a manual on how I am supposed to act or what I am supposed to do.
Yes, I know the five stages of grief and how I am to go through all of the stages. My question is why? Why should I be in disbelief? My body has been telling me for over a year now that something is wrong. Why should I be angry? No one did this to me on purpose. Anger is just a waste of energy right now. Why should I try and bargain? With what? There is no material thing that I possess that will lengthen my life, and knowing what I know about ALS I don't know that I want that. Why be depressed? I have done some really amazing things in my life that not every one gets to do. This is just another adventure and journey to a remarkable conclusion.
Why not be in acceptance? In October 2006 I had a major heart attack. I should have died. In fact I almost did. I lived because a hero known as my youngest daughter saw it for what it was and called 911. If it had not been for her prompt and correct action I would not have had the joy of holding her child in my arms or her nephew either. I was spared that day for a reason. I can only hope that I have fulfilled that reason and not left anything else undone.
Now I have more appreciation of all the little things; a good report card, a call from my babies, a hug, a kiss, a caress, a look of love, a special dish made just for me. These things and many, many more are the most precious items in the world. Too bad dying makes them stand out as they should.
Until next time...............
I have been thinking about how some people have reacted to how I am "handling" things. I have been told I am courageous, an inspiration, a hero, some one to admire. I don't know. I don't feel like I am those things in particular. I just feel like me. Confused at times yes, but who is not? Concerned about my family, but who would not be?
Over protected at times, and yeah I like that. It means people are reaching outside of themselves to do a greater good. If this illness I have is going to have a positive result, then that is one very big positive. To reach outside of one's self to comfort someone is all too difficult at times, and inconvenient at other times. For those that try, they receive more self- and other-awareness that can only enrich their life.
One thing people tell me is inspirational to them is how I am handling all of this. To tell the truth I am not sure how I am supposed to be handling all of this. I am kind of an armature at this dying thing you know. I haven't found a manual on how I am supposed to act or what I am supposed to do.
Yes, I know the five stages of grief and how I am to go through all of the stages. My question is why? Why should I be in disbelief? My body has been telling me for over a year now that something is wrong. Why should I be angry? No one did this to me on purpose. Anger is just a waste of energy right now. Why should I try and bargain? With what? There is no material thing that I possess that will lengthen my life, and knowing what I know about ALS I don't know that I want that. Why be depressed? I have done some really amazing things in my life that not every one gets to do. This is just another adventure and journey to a remarkable conclusion.
Why not be in acceptance? In October 2006 I had a major heart attack. I should have died. In fact I almost did. I lived because a hero known as my youngest daughter saw it for what it was and called 911. If it had not been for her prompt and correct action I would not have had the joy of holding her child in my arms or her nephew either. I was spared that day for a reason. I can only hope that I have fulfilled that reason and not left anything else undone.
Now I have more appreciation of all the little things; a good report card, a call from my babies, a hug, a kiss, a caress, a look of love, a special dish made just for me. These things and many, many more are the most precious items in the world. Too bad dying makes them stand out as they should.
Until next time...............
Monday, February 23, 2015
What I Have Gone Through So Far
Up to now I have not said a lot about how ALS is affecting me physically and my life in general. I have done so on purpose. The reason boils down to six little words. I do not want people's pity. And that in and of itself is the paradox. In order to let people know about what I am going through, a certain amount of pity is generated. Well here goes nothing and hoping that you might understand a little bit more.
The first thing that I noticed was a certain slurring of my speech and becoming overly emotional at things like TV shows. The slurring has now progressed to where, at times now, even my wife, who is with me every day, may not understand what I say. Forget about using a telephone unless I am texting. I sound like a gravel pit being turned over in a metal drum. Add that to a poor connection and you have either a comedy of misunderstandings or a frustration that just adds to the speech becoming worse. I have learned how to handle the extreme emotions a little better. At least I don't cry at leaves falling on the ground. Anymore.
I have good days and bad days with swallowing and drinking. Yesterday was one such bad day. I got choked enough that I needed help. Other days are better. I cannot say good because that would imply that I have no problems with anything. That simply is not true. I have my problems but have devised work arounds to deal with the situation. On bad days I want nothing to do with being in public. I am basically very shy and reclusive in my nature and always have been, but lets face it, a grown man choking on a drink and not being able to breath for a little while does tend to draw a certain amount of attention.
Most of the problems that I have are centered, for now, in my neck and throat. Besides the difficulty in swallowing I have muscle spasms/cramps in the small muscles in my neck and under my tongue. These can be triggered simply by yawning or taking a sip of a drink. If you have ever had a calf cramp up, what we in the South refer to as a Charlie Horse, you can imagine then the intensity of the pain that I feel for several seconds to a minute in my neck.
I have also noticed that I have a tendency to tire easily. Not from doing anything physically demanding but just a general lackadaisical tiredness and acheness. It is a good thing that I like to read for that is what helps me get through those days like that.
This is not an exhaustive list of what is going on with me and I am not for sure that I could ever cover everything in a blog. If I could I am not sure that I should. I don't want to dwell on the maudlin and depressing. I choose to focus on the good things and fun times that I can still have. Yes, you will see, from time to time, my humor and wit. For it is not in my nature any more to let things depress me for too long nor to allow those around me to not smile and laugh. For that is how I want to be remembered, with a smile and a chuckle and maybe, just maybe, a good old fashioned belly laugh that goes on for so long that tears of joy are shed and love is felt.
Until next time..........................
The first thing that I noticed was a certain slurring of my speech and becoming overly emotional at things like TV shows. The slurring has now progressed to where, at times now, even my wife, who is with me every day, may not understand what I say. Forget about using a telephone unless I am texting. I sound like a gravel pit being turned over in a metal drum. Add that to a poor connection and you have either a comedy of misunderstandings or a frustration that just adds to the speech becoming worse. I have learned how to handle the extreme emotions a little better. At least I don't cry at leaves falling on the ground. Anymore.
I have good days and bad days with swallowing and drinking. Yesterday was one such bad day. I got choked enough that I needed help. Other days are better. I cannot say good because that would imply that I have no problems with anything. That simply is not true. I have my problems but have devised work arounds to deal with the situation. On bad days I want nothing to do with being in public. I am basically very shy and reclusive in my nature and always have been, but lets face it, a grown man choking on a drink and not being able to breath for a little while does tend to draw a certain amount of attention.
Most of the problems that I have are centered, for now, in my neck and throat. Besides the difficulty in swallowing I have muscle spasms/cramps in the small muscles in my neck and under my tongue. These can be triggered simply by yawning or taking a sip of a drink. If you have ever had a calf cramp up, what we in the South refer to as a Charlie Horse, you can imagine then the intensity of the pain that I feel for several seconds to a minute in my neck.
I have also noticed that I have a tendency to tire easily. Not from doing anything physically demanding but just a general lackadaisical tiredness and acheness. It is a good thing that I like to read for that is what helps me get through those days like that.
This is not an exhaustive list of what is going on with me and I am not for sure that I could ever cover everything in a blog. If I could I am not sure that I should. I don't want to dwell on the maudlin and depressing. I choose to focus on the good things and fun times that I can still have. Yes, you will see, from time to time, my humor and wit. For it is not in my nature any more to let things depress me for too long nor to allow those around me to not smile and laugh. For that is how I want to be remembered, with a smile and a chuckle and maybe, just maybe, a good old fashioned belly laugh that goes on for so long that tears of joy are shed and love is felt.
Until next time..........................
Sunday, February 22, 2015
Some Things I Can Still Do
Yesterday I talked about some of the seemingly simple things that I used to be able to do, that I cannot do now. Along with that list goes another, much longer list, of things that I can still do. I will try and keep it brief. At least under a hundred pages.
1. I can still shoot and clover leaf three .22 rounds at 25 yards. That might be more the rifle than me but it is still fun.
2. I can still drive. It might be a 'little' thing to most but try giving up driving for a month. I bet that after a day, two at the most you will be able to appreciate driving more.
3. I can appreciate my favorite foods more. I don't have to worry about cholesterol, salt, or any of those other 'nasty' things we are told are not good for us. In moderation of course. I am not going to sit down and eat a German chocolate cake all by myself. I will give Golddean at least one slice.
4. I can still be sarcastic, funny and outlandish. Just because I have this monster does not mean this monster has me. Too many times, even in good health, we take ourselves too seriously. Why should we? Having fun and laughing is manna for the spirit. Without laughter our spirit dries up and withers away. To me I can imagine no worse fate for any one.
5. I can still process information quickly. Bare with me for a second because this might not be easy for me to explain. In ALS there is a disconnect between nerves carrying signals from the brain to the muscles. The muscles don't always get the message from the nerves. From lack of stimulation the muscles atrophy from lack of use. This does not mean that the brain slows down in processing information or forming responses to conversation. It just means that I am slower at getting it said and having it understood. My brain functions as it always has. At the speed of cold molasses sometimes but never the less it functions.
6. I can still hear and understand people without them being louder and slower in their speaking to me. It amazes me that when folks figure out that I have a disability that they try to talk louder and slower to make sure I understand them. Need I really say more about that?
Well that is just a scratch at the list, but I did promise to keep this blog under a hundred pages today. There are so many things that I can still do and that I am grateful to be able to do. Some one made the comment to me that it was really depressing to see the list of what I could no longer do. I don't see it that way, for I am blessed right at this moment to be able to do a lot more than I cannot do. And that in itself is good.
Until next time...............
1. I can still shoot and clover leaf three .22 rounds at 25 yards. That might be more the rifle than me but it is still fun.
2. I can still drive. It might be a 'little' thing to most but try giving up driving for a month. I bet that after a day, two at the most you will be able to appreciate driving more.
3. I can appreciate my favorite foods more. I don't have to worry about cholesterol, salt, or any of those other 'nasty' things we are told are not good for us. In moderation of course. I am not going to sit down and eat a German chocolate cake all by myself. I will give Golddean at least one slice.
4. I can still be sarcastic, funny and outlandish. Just because I have this monster does not mean this monster has me. Too many times, even in good health, we take ourselves too seriously. Why should we? Having fun and laughing is manna for the spirit. Without laughter our spirit dries up and withers away. To me I can imagine no worse fate for any one.
5. I can still process information quickly. Bare with me for a second because this might not be easy for me to explain. In ALS there is a disconnect between nerves carrying signals from the brain to the muscles. The muscles don't always get the message from the nerves. From lack of stimulation the muscles atrophy from lack of use. This does not mean that the brain slows down in processing information or forming responses to conversation. It just means that I am slower at getting it said and having it understood. My brain functions as it always has. At the speed of cold molasses sometimes but never the less it functions.
6. I can still hear and understand people without them being louder and slower in their speaking to me. It amazes me that when folks figure out that I have a disability that they try to talk louder and slower to make sure I understand them. Need I really say more about that?
Well that is just a scratch at the list, but I did promise to keep this blog under a hundred pages today. There are so many things that I can still do and that I am grateful to be able to do. Some one made the comment to me that it was really depressing to see the list of what I could no longer do. I don't see it that way, for I am blessed right at this moment to be able to do a lot more than I cannot do. And that in itself is good.
Until next time...............
Saturday, February 21, 2015
Things That I Miss Being Able To Do
My understanding of ALS, and I could be wrong about it, is the nerves and the muscles they control stop communicating. I am sure that is an oversimplification and some of you reading this may have a better understanding than I do right now. I am sure that I will learn more as I progress and talk to doctors. Having said all of that, there are things that I miss being able to do. Here are just some of them:
1. Curling my tongue to make a circle. Seems simple right? Well where my ALS is centered it has affected all of my mouth and lingual (tongue) muscles. It has been something that I have been able to do all of my life thanks to my parents. If you didn't know that ability is inherited.
2. Turning my tongue upside down. Yes, I mastered that skill. I used to amaze little kids by doing that. It also gave them something to try and do. I am sure parents were so grateful that I had showed them that.
3. Whistling. I never did whistle a lot but I did at times to release tension or just because I was in a good mood. I also trained a cat to come to me when I whistled. Yeah I know. Weird. Of course cats are weird and the weirdest ones seem attracted to me.
4. Blowing bubble gum bubbles. Although I have not chewed bubble gum in years it still bugs me. To blow bubbles is dependent on the next thing that I miss.
5. Sticking out my tongue. In our family we have kinda fallen into a thing when pictures are being taken and that is, in at least one we all stick our tongues out at the camera. Don't ask me why, it's just one of those family things you find yourself doing.
6. Speaking clearly and quickly. There are certain sounds and words that I really have to concentrate on saying. Not always the same sounds and words. Different ones at different times and depending on how tired I am. I have found that by bedtime I have a harder time. When I want to smile and say something I can't. I miss opportunities to make comments quickly in reaction to what some one else has said. Besides it cuts down on my flirting as well. :)
7. Kissing. Not the spit swapping, tonsil tickling kissing, but the quick peck on the cheek or the giving of "sugars" to the babies, kissing. I have to really concentrate to make the smack. Pressing my lips to skin doesn't quite have the same meaning. Yes, it conveys to the receiver that I am trying and that I love them and they understand. Yet, to me, it is a symbol of defeat. A small one yes, but an important one for me.
For all of these things that I miss I have discovered, or rather rediscovered, something else. The intimacy of touching. The largest organ in (on?) the body is skin. It transfers thousands of little bits of information to the brain every second. Hot or cold, soft or hard, pain or pleasure. Doctors touch of a necessity to examine and diagnose. Nurses touch to heal. They know almost instinctively that a touch can do more to heal than the medicines or procedures that they carry out. A touch on the arm or hand of a loved one calms and reassures. A hug can transfer power and feelings more profound than words.
For me I touch my Angel frequently just to let her know I am there and thinking about and loving her. I know that one day she will yearn for that touch and caress when I will be no longer able to give it to her. Maybe, just maybe, she will have the memory of my touch and feel it again and some of the pain will go away.
Until next time..............
1. Curling my tongue to make a circle. Seems simple right? Well where my ALS is centered it has affected all of my mouth and lingual (tongue) muscles. It has been something that I have been able to do all of my life thanks to my parents. If you didn't know that ability is inherited.
2. Turning my tongue upside down. Yes, I mastered that skill. I used to amaze little kids by doing that. It also gave them something to try and do. I am sure parents were so grateful that I had showed them that.
3. Whistling. I never did whistle a lot but I did at times to release tension or just because I was in a good mood. I also trained a cat to come to me when I whistled. Yeah I know. Weird. Of course cats are weird and the weirdest ones seem attracted to me.
4. Blowing bubble gum bubbles. Although I have not chewed bubble gum in years it still bugs me. To blow bubbles is dependent on the next thing that I miss.
5. Sticking out my tongue. In our family we have kinda fallen into a thing when pictures are being taken and that is, in at least one we all stick our tongues out at the camera. Don't ask me why, it's just one of those family things you find yourself doing.
6. Speaking clearly and quickly. There are certain sounds and words that I really have to concentrate on saying. Not always the same sounds and words. Different ones at different times and depending on how tired I am. I have found that by bedtime I have a harder time. When I want to smile and say something I can't. I miss opportunities to make comments quickly in reaction to what some one else has said. Besides it cuts down on my flirting as well. :)
7. Kissing. Not the spit swapping, tonsil tickling kissing, but the quick peck on the cheek or the giving of "sugars" to the babies, kissing. I have to really concentrate to make the smack. Pressing my lips to skin doesn't quite have the same meaning. Yes, it conveys to the receiver that I am trying and that I love them and they understand. Yet, to me, it is a symbol of defeat. A small one yes, but an important one for me.
For all of these things that I miss I have discovered, or rather rediscovered, something else. The intimacy of touching. The largest organ in (on?) the body is skin. It transfers thousands of little bits of information to the brain every second. Hot or cold, soft or hard, pain or pleasure. Doctors touch of a necessity to examine and diagnose. Nurses touch to heal. They know almost instinctively that a touch can do more to heal than the medicines or procedures that they carry out. A touch on the arm or hand of a loved one calms and reassures. A hug can transfer power and feelings more profound than words.
For me I touch my Angel frequently just to let her know I am there and thinking about and loving her. I know that one day she will yearn for that touch and caress when I will be no longer able to give it to her. Maybe, just maybe, she will have the memory of my touch and feel it again and some of the pain will go away.
Until next time..............
Friday, February 20, 2015
An Open Letter
An open letter to dear friends. Names have been changed to protect the innocent which happens to be me:
Dear friend I am so sorry you feel crotchety today! Hopefully it will get better.
Xavier and Zetta, I am not refusing to communicate in the English language, nor by using modern technology. I am saying that at this moment in time I am not in a position to do so. I truly do appreciate you both giving me some viable options to look into and to utilize when the time comes. I know this is out of love that you do so and I am grateful that I have friends that think that much of me that they go out of their way to make sure I know what is out there. You would be surprised at how many of our friends from school give me the long face and a one line response to the fact that I am dying.
And, yes I am dying. There is no use in not putting that point to it. It might be in a year. It might be in 20 years. The fact remains that I am slowly, measurably, and inescapably dying. I have ALS, but ALS does not have me! I will continue to do until I can do no more. Will there be things that I cannot do? Yes, of course there will be and there are. Will I adjust to a constantly changing situation? Yes I will, and by the Gods, I will have fun doing it. You both know my somewhat insane sense of humor. What you don't know is that in times of illness it gets even worse.
This is not to say that I am in anyway giving up or giving in to this disease. Nor am not being defeatist about this. Rather, I am (at least I think I am) being realistic.
I hope you understand where I am coming from and that if I have hurt either of you that it is truly unintentional because I would never do that to you, my old friends.
Now Xavier and Zetta, get a cup of coffee and everything will be okay in a decade or two. Maybe as soon as a lustrum. (LOL I love that word!)
With love for both,
B
American by birth,
Southern by the grace of God.
Thursday, February 19, 2015
Finally an Appointment
I didn't sit down last night to write anything and some times that might be what I need to do to gather thoughts and hash things out for myself.
We got a call about 6 pm last night from UAMS ALS Clinic. I will be going in on 9 March to get things started and plan out treatments. One thing about what they do there is a 'team' effort; docs, sociologist, psychologist, speech, physical, and occupational therapist; which I like. I am wondering though, how an occupational therapist will help with my squirrel hunting, as that is the closest thing I have to an occupation right now.
That week will surely be busy for me. Appointment with UAMS on the 9th, cardiologist on the 10th, and birthday on the 11th. Not to mention I need to get in to see my PCP for annual blood work and med checks. The later I want to put off until I know what kind of meds I will be taking and any other adjustments that need to be taken. One thing I wish I could do is take my PCP with me when we move. I could never have asked for a better doc!
The girls have all been looking for housing for us near(er) them. I really want to go back and be with them but I am not for sure I can go back to two families in one house. I have gotten used to the house being quiet and not having to worry about disturbances between the kids. With the ALS I have a feeling my physical and, to a certain extent, mental energies will be taken up fighting the symptoms and I don't need the added pressure of the kids. Don't get me wrong! I love them with all of my heart and always will but I will need quiet and calm, more so now than ever before. Besides I can run around he house in my underwear if I want to if they are not there.
As all ways let me know how I am doing with this blog. If you want to know about some thing just ask. I don't know that I will answer but you can ask just the same.
Until next time...............
We got a call about 6 pm last night from UAMS ALS Clinic. I will be going in on 9 March to get things started and plan out treatments. One thing about what they do there is a 'team' effort; docs, sociologist, psychologist, speech, physical, and occupational therapist; which I like. I am wondering though, how an occupational therapist will help with my squirrel hunting, as that is the closest thing I have to an occupation right now.
That week will surely be busy for me. Appointment with UAMS on the 9th, cardiologist on the 10th, and birthday on the 11th. Not to mention I need to get in to see my PCP for annual blood work and med checks. The later I want to put off until I know what kind of meds I will be taking and any other adjustments that need to be taken. One thing I wish I could do is take my PCP with me when we move. I could never have asked for a better doc!
The girls have all been looking for housing for us near(er) them. I really want to go back and be with them but I am not for sure I can go back to two families in one house. I have gotten used to the house being quiet and not having to worry about disturbances between the kids. With the ALS I have a feeling my physical and, to a certain extent, mental energies will be taken up fighting the symptoms and I don't need the added pressure of the kids. Don't get me wrong! I love them with all of my heart and always will but I will need quiet and calm, more so now than ever before. Besides I can run around he house in my underwear if I want to if they are not there.
As all ways let me know how I am doing with this blog. If you want to know about some thing just ask. I don't know that I will answer but you can ask just the same.
Until next time...............
Tuesday, February 17, 2015
On Waiting and Honesty
Having been dealing with this disease called ALS for over a year now, there is one thing that you might think that I would have developed, and that would be patience and dealing with the waiting. Apparently not. I just don't understand why it would take from January of last year to January of this year to gain a diagnosis. I realize that it takes time to setup appointments with the right people and schedule tests but all that does is add more stress to the patient. I think that has been the worse part about all of this. Not knowing definitely what is going on.
Now that I do know, there is a whole new set of questions to find the answers to. How fast am I progressing; what can I expect to happen physically; what treatments to try and what treatments to reject; what meds need to be started and which ones to discontinue; how much time? The last, we are assured by philosophers and religious writers, is not for us to know.
I am not so concerned with when my life will end, for surely all life must end in the appointed time, but rather with how much time I have to make good memories. Memories to last life times to come for my descendants and loved ones. Good memories of laughter, fun, and silliness. Stories passed from one generation to the next. Of going to the woods or the lakes and streams. Of cooking in the kitchen. Of sitting and watching a movie with a sleeping, snuggling child in my lap. Of living! Of loving! These more than anything else will be my legacy. For surely I am not a rich man. What I have may not be worth that much monetarily, but will be, hopefully, priceless to the one who possesses it.
One other thing that I have found is a certain liberty to be honest. After all who wants to argue with a dying man? Alright, I know, that was not right. Seriously though, I have found that I no longer care about putting up a front to those that I have disliked but because of circumstances have had to pretend to get along with. I no longer need to hide my feelings towards people. I can express gratitude for the smallest of things without the expectation of something in return. I no longer have to hold back on opinions and attitudes. I can freely tell my Angel of 35 years, that I love her 2011 times a day without feeling cheesy in doing so. I can tell my friends my deepest feelings. And I can share, with perfect strangers, what I am going through and how it is affecting me and my extended family.
I wish for all that freedom.
Until next time................
Now that I do know, there is a whole new set of questions to find the answers to. How fast am I progressing; what can I expect to happen physically; what treatments to try and what treatments to reject; what meds need to be started and which ones to discontinue; how much time? The last, we are assured by philosophers and religious writers, is not for us to know.
I am not so concerned with when my life will end, for surely all life must end in the appointed time, but rather with how much time I have to make good memories. Memories to last life times to come for my descendants and loved ones. Good memories of laughter, fun, and silliness. Stories passed from one generation to the next. Of going to the woods or the lakes and streams. Of cooking in the kitchen. Of sitting and watching a movie with a sleeping, snuggling child in my lap. Of living! Of loving! These more than anything else will be my legacy. For surely I am not a rich man. What I have may not be worth that much monetarily, but will be, hopefully, priceless to the one who possesses it.
One other thing that I have found is a certain liberty to be honest. After all who wants to argue with a dying man? Alright, I know, that was not right. Seriously though, I have found that I no longer care about putting up a front to those that I have disliked but because of circumstances have had to pretend to get along with. I no longer need to hide my feelings towards people. I can express gratitude for the smallest of things without the expectation of something in return. I no longer have to hold back on opinions and attitudes. I can freely tell my Angel of 35 years, that I love her 2011 times a day without feeling cheesy in doing so. I can tell my friends my deepest feelings. And I can share, with perfect strangers, what I am going through and how it is affecting me and my extended family.
I wish for all that freedom.
Until next time................
Monday, February 16, 2015
Ramblings
I am not for sure about what the 'rules' are in blogging so I guess I will make up my own rules and post when I feel like it. In keeping with that here are some rambling thoughts:
Funerals are the only gathering where the guest of honor would rather be any where else but there.
From the day that we are born there is only one guarantee in life and that is we will die. What we do in between is what matters.
The depth of sorrow is only matched by the depth of love one feels. For without love there can be no sorrow. Without sorrow there can be no grief. Without grief there can be no healing.
People tell me I am a hero. To me I am not. I am just a man trying to do the best that I can.
Waffle House is pretty scary when the lights go out.
Why is there a lock on the door of a business that is open 24/7 anyway?
Beware of your influence and reputation. Both extend farther than what you think.
Baby girls and boys, no matter how cute, grow up to be teenagers.
Philosophy is not my strong suit. By now you should have realized this. ;)
I worked four years in college for my BS but all I got was a BA.
"I laugh because if I did not, I would cry." Abe Lincoln cir 1861 to 1865
I guess that is it for right now. If you are enjoying this I would love to hear from you. If not so be it.
Until next time....................
Funerals are the only gathering where the guest of honor would rather be any where else but there.
From the day that we are born there is only one guarantee in life and that is we will die. What we do in between is what matters.
The depth of sorrow is only matched by the depth of love one feels. For without love there can be no sorrow. Without sorrow there can be no grief. Without grief there can be no healing.
People tell me I am a hero. To me I am not. I am just a man trying to do the best that I can.
Waffle House is pretty scary when the lights go out.
Why is there a lock on the door of a business that is open 24/7 anyway?
Beware of your influence and reputation. Both extend farther than what you think.
Baby girls and boys, no matter how cute, grow up to be teenagers.
Philosophy is not my strong suit. By now you should have realized this. ;)
I worked four years in college for my BS but all I got was a BA.
"I laugh because if I did not, I would cry." Abe Lincoln cir 1861 to 1865
I guess that is it for right now. If you are enjoying this I would love to hear from you. If not so be it.
Until next time....................
Sunday, February 15, 2015
Angels Among Us
On 28 Jan 2015 when the doc gave me the long face, confirming what I had felt for so long, I came home and first notified all of my family, and then posted it on FB and two other sites that I visit regularly. I figured that I would get just a smattering of aw geeze type remarks from people ranging from those I grew with and those that I have met online. Instead I got this wonderful out flowing of genuine concern and emotions.
On one site an individual from Canada offered to do whatever it took to help me with finishing a bucket list I talked about. Another from the site offered to take me fishing and hunting in GA for anything I wanted to fish for or hunt. But there was one special offer that I want to tell about now.
While we were waiting to get a final diagnosis, a young man and his wife were waiting for their first born to arrive. That in and of itself was special and reminded me of the song "And When I Die" by Blood, Sweat, and Tears. If you have not heard or heard it recently go to youtube.com and look it up.
Any way back to the subject. The young father was devastated to hear my news. From his written words in the forum you could tell how sincere he was in his upset. He emailed me later and offered lodging if Golddean and I wanted to take a vacation to Maine if we needed to get away. He offered as well to send fresh Maine lobster to us free of charge. His gesture hit me hard needless to say. Here is some one who I have never set eyes on, offering more than I deserve. And him with a 6 week old baby boy.
After corresponding back and forth I suggested that if he really wanted to do something for me, he could plant a hardwood tree in my memory. The long and short of it is a white oak sapling will be planted some where in Maine this spring. He also promised to take his son hunting under that tree for squirrel and deer when both become old enough.
Now you can see why I say there are angels among us. They just make their appearance when we really need them and not before. And surely this man is one of them.
Until next time.............
On one site an individual from Canada offered to do whatever it took to help me with finishing a bucket list I talked about. Another from the site offered to take me fishing and hunting in GA for anything I wanted to fish for or hunt. But there was one special offer that I want to tell about now.
While we were waiting to get a final diagnosis, a young man and his wife were waiting for their first born to arrive. That in and of itself was special and reminded me of the song "And When I Die" by Blood, Sweat, and Tears. If you have not heard or heard it recently go to youtube.com and look it up.
Any way back to the subject. The young father was devastated to hear my news. From his written words in the forum you could tell how sincere he was in his upset. He emailed me later and offered lodging if Golddean and I wanted to take a vacation to Maine if we needed to get away. He offered as well to send fresh Maine lobster to us free of charge. His gesture hit me hard needless to say. Here is some one who I have never set eyes on, offering more than I deserve. And him with a 6 week old baby boy.
After corresponding back and forth I suggested that if he really wanted to do something for me, he could plant a hardwood tree in my memory. The long and short of it is a white oak sapling will be planted some where in Maine this spring. He also promised to take his son hunting under that tree for squirrel and deer when both become old enough.
Now you can see why I say there are angels among us. They just make their appearance when we really need them and not before. And surely this man is one of them.
Until next time.............
A Little About What Is Going On
On the 28th of January 2015 I was diagnosed with Bulbar onset ALS. This is an attempt at recording events, situations, and feelings in this new turn in my life. Some of you may think this is a self serving blog about how well I am handling this devastating news. Those that know me, know that is not true.
This is an attempt at letting folks know about this journey that I have started on. It will be as honest as I can make it. There will be some laughter (alot I hope!) and some tears, more than a few I fear. There may even be some hurt feelings as I feel the need to honest and forthright about what I will be going through.
At this point I have no idea how much time I have left, but with what time I do have left I intend to make the most of it. Doing until I can no longer can. Loving every day those that are special to me. Giving comfort to my family.
My family is who I worry about. I don't worry about myself because I know what will be the ultimate out come and I am at peace with that. Some say it is amazing how I am handling all of this, and that they admire and are in awe about my composure. I do not feel that I am that special, nor am I an inspiration. I am just me. Trying to be the best that I can be.
I will write more latter. If you like this and want to hear read more just let me know.
Until next time..............
This is an attempt at letting folks know about this journey that I have started on. It will be as honest as I can make it. There will be some laughter (alot I hope!) and some tears, more than a few I fear. There may even be some hurt feelings as I feel the need to honest and forthright about what I will be going through.
At this point I have no idea how much time I have left, but with what time I do have left I intend to make the most of it. Doing until I can no longer can. Loving every day those that are special to me. Giving comfort to my family.
My family is who I worry about. I don't worry about myself because I know what will be the ultimate out come and I am at peace with that. Some say it is amazing how I am handling all of this, and that they admire and are in awe about my composure. I do not feel that I am that special, nor am I an inspiration. I am just me. Trying to be the best that I can be.
I will write more latter. If you like this and want to hear read more just let me know.
Until next time..............
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