Well, it looks like this will be another busy week for me. Last week I spent quite a bit of time in meetings and this one looks no different. Meetings and e-mail are a tremendously draining of my time. The extra mail I get from being a "deputy" is staggering.
The past weekend was pleasant. I had breakfast with the guys like I normally do on Saturdays and instead of Geocaching right afterwards like I normally do, I went back home to take care of a few "honey do's". I got them all done but one and probably could have take care of that one as well but I just was not in the mood to do it.
On Saturday I managed to clean and fix a leaky gutter, trim and edge the lawn, reset a sunken paver in the yard, pull out and move back the washer (so my wife could clean behind it), set up my wife's new Moto G mobile phone, and vacuum the house. I know it probably does not sound like much but probably took me about 6 hours or so to do.
Sunday I went geocaching with a group of local cachers near Duncanville, specifically at Joe Pool Lake along the dam. About 15 of us showed up to walk the 4 miles of dam and service road to collect the 30 caches that were there. I guess we could have gotten more but we decided to cut it short.
To make up for the bad (health-wise) fast food lunch I had, I made a crab meat, spinach, and mushroom scramble for dinner. I gave it a kick with some pepper jack cheese and itt really hit the spot.
I was unable to work out this morning due to a 6:30 AM meeting with colleagues in Europe. Last week I had several early morning meetings as well that kept me from working out. I really need to take a walk this evening to try to get some exercise in.
After my two meetings were over (I also had on at 9:00 am) I boxed up my old work mobile phones to be recycled. The entire process was pretty easy. The hardest part was finding a box small enough to ship them back in. The phones have been sitting my drawer for a long time and I do not know why I had not sent them back yet.
Monday, March 30, 2015
Thursday, March 26, 2015
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!
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!
Wednesday, March 25, 2015
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!
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!
Monday, March 23, 2015
The Running Man
Just a short update.
I walked 4.5+ miles on Sunday at a very brisk pace (13:40/mile), working up a bit of a sweat in the process. It felt good to be outside with all the rain we have received lately. Yes the ground was soggy but it will dry up.
I worked out this morning at the facility in my office building. For the past 10+ days I have shied away from running due to the tweak to my left ankle. Since my ankle appeared fine, I hit the treadmill with the intention of running 5 miles. I ended up goin 4 at a slightly slower pace than normal, then hit the elliptical machine for 20 minutes to do 3 more miles. I was not enjoying the first mile of my run, but I have learned never to judge the workout by the first mile.
I was a little winded and I was definitely sweating a lot afterwards, There was a little pain but not horrible. I will try to duplicate this workout on Wednesday, maybe getting 5 miles of running and 4-5 on the treadmill.
I also wanted to give props to Tom Brower, my running partner, who broke the 2 hour mark during his last half marathon. He is a couple of years older than I am but in great shape and has been an inspiration to me to keep running, even when I do not feel like it.
Way to go, Tom!
I walked 4.5+ miles on Sunday at a very brisk pace (13:40/mile), working up a bit of a sweat in the process. It felt good to be outside with all the rain we have received lately. Yes the ground was soggy but it will dry up.
I worked out this morning at the facility in my office building. For the past 10+ days I have shied away from running due to the tweak to my left ankle. Since my ankle appeared fine, I hit the treadmill with the intention of running 5 miles. I ended up goin 4 at a slightly slower pace than normal, then hit the elliptical machine for 20 minutes to do 3 more miles. I was not enjoying the first mile of my run, but I have learned never to judge the workout by the first mile.
I was a little winded and I was definitely sweating a lot afterwards, There was a little pain but not horrible. I will try to duplicate this workout on Wednesday, maybe getting 5 miles of running and 4-5 on the treadmill.
I also wanted to give props to Tom Brower, my running partner, who broke the 2 hour mark during his last half marathon. He is a couple of years older than I am but in great shape and has been an inspiration to me to keep running, even when I do not feel like it.
Way to go, Tom!
Saturday, March 21, 2015
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
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
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