Tuesday, December 14, 2010
As a patient. I find this extremely frustrating and using examples from other diseases, I don't really understand the reasoning or politics behind it. Cancer research centers cross communicate, Parkinson's, Alzheimer's and multiple sclerosis groups seem to share at least basic knowledge of trials and drug candidates. I also became aware of a Facebook group which has the sole mission of boycotting ALSA, National due to its inability to use funds for "significant" research. Don't get me wrong, ALSA on the local level is extremely helpful and useful when it comes to patient and caregiver support, but of course they're not involved with research. Our family receives tremendous support from our local Rocky Mountains Chapter.
This all became very apparent to me in the preceding months before our CBS special, Live for the Moment (LF TM), which aired on January 28, 2010. In order to make the most out of the show and its slot on primetime Thursday night CBS television, I began working very hard to make ALS TDI, ALSA and MDA aware of it. I was very successful in getting buy-in from ALS TDI and their full support to put the show's logo on their website. ALSA national also was very eager to promote the show and had a write up and logo on their front page as well. It was a little bit more difficult with MDA due to the way it was handled between their representative and the CBS. (A long story). In the many writeups and comments from the ALS community that followed, ALSA was criticized for not buying airtime just after the show as a public awareness opportunity and a chance to point people to websites where they could donate time and money.
I'm not quite sure what can be done in order to encourage the primary groups to engage one another more frequently and at a greater depth. The willingness also doesn't go both ways equally. What I mean is, ALS TDI is extremely willing to work with ALSA and MDA, and in the case of MDA, they have the Augie's Quest initiative, which does donate considerable funds to ALS TDI in Boston, Massachusetts. However, ALSA seems to be an organization that is closed and operating primarily within its own boundaries. If this is not the case, I have failed to find evidence of it on their prep site.
Some groups focus on caregiver assistance and equipment for patients along with the fundraisers and awareness events to raise money for the use activities. Other groups focus solely on therapeutics such as the Therapy Development Institute. MDA and ALSA are organizations that try to do both and it would be far more effective to funnel all funding into, one highly capable organization. Maybe the funding would reach such a level that the government would take notice and match or contribute additional funds. There are multiple facets to this philosophy such as, if multiple centers are doing the research, then you have multiple approaches and different thought processes going on. But no one seems to have enough money to make headway on their own. Anyway, maybe if all of the research groups were to be housed under one roof and pooled all of the money, then the multiple philosophies and drug approaches would be combined with uninhibited communication between the groups.
Yeah, like that would ever happen in my lifetime…
I would love to hear your comments and read any thoughts you have on this topic.
Sunday, December 05, 2010
The majority of contacts I have received always seem to include a segment on how inaccurate and incapable blood tests are at detecting Lyme disease. While it may be true that standard blood tests are inadequate, my interest wanes quickly as I discover that they want me to take a certain supplement, call a certain Dr. or begin some miracle therapy. I myself, had my blood work done by the premier lab just for this type of test. After also being pulled into this "Lyme" lie/scam/false belief... etc., I had heard of David Martz, MD through a friend and had watched his videos online. A close friend of mine, also with ALS, was contacted by someone in Texas who had worked with Dr. Martz and his staff out of Creek Trail Medical Clinic in Colorado Springs. Dr. Martz has since retired and Dr. William Harvey has taken over, at least as of 1 1/2 years ago.
Their theory was also that some bacteria or disease that could be treated with powerful, high dose antibiotics delivered intravenously. Before treatment, however, both my friend and I had blood drawn and sent off to IGeneX, Inc. By the way, I also had blood tested at the Houston Medical Center as well as the University of Colorado Medical Center. Which were also both negative for Lyme. Watch the videos in this post to form your opinion.
With regard to high dose antibiotics delivered intravenously;
Wednesday, October 13, 2010
Near the Mediterranean seaside town Cathedral
Date: June 2009
Connor, next to the world's largest green Converse hightop.
It's taking up 2 parking spots as compared to the silver car behind it.
Strange art can be seen around the world.
Thursday, September 23, 2010
After a few weeks of fairly low activity, a lot of fun things have recently happened.
Some Astronomy Fun:
Connor and I when out for a viewing session of Jupiter as it makes its closest approach this September 2010 until the year 2022. I had sold my larger Meade LX 200 GPS scope approximately 2 years ago, but kept the smaller Meade ETX 105 for easier viewing sessions and eventually something to pass on to Connor and Brandon. I hadn't brought it out in over a year and even thought about selling it. (I've recently been wanting to buy a Macintosh)
Well, it was late, but we decided to pull it out and set it up at about 9:30 PM. Julie wasn't thrilled that was keeping Connor until 1130, but hey, has been over a year. The moon was almost full and as sparse clouds slowly passed by the crystal-clear sky, Jupiter was out in all its glory. It was almost 75°, a gentle breeze kept any bugs away and it was perfect.
Connor and I have seen Jupiter many times and I have even spent many hours imaging Jupiter with both the 10 inch scope and the 5 inch scope.
My neighbor came over and it was his first time looking through a telescope, ever. I think he enjoyed it very much and was also amazed at the detail that was visible on the almost full moon. I mentioned, of course, that the real in viewing the moon is when it is first quarter or less. All four Gallery in satellites were clearly visible as shown in the astronomy program graphic below.
And here is a picture I took of Jupiter back in 2004 And the rest of my astronomy hobby Photo album!
Wednesday, September 22, 2010
Get enough to eat and drink
(credit to another ALS patients blog)
Most people find a gastrostomy tube is much more comfortable and easy to use than they thought it would be.
Malnutrition, present in 16 percent to 50 percent of people with ALS, is a predictor for worsened survival, according to a study published in 2000. The main cause of malnutrition in ALS is swallowing dysfunction, resulting from paralysis of muscles involved in swallowing, but weakness of the muscles involved in chewing food also contributes, as does a higher than normal metabolic rate of uncertain origin in this disease. (My metabolism has always been skyhigh)
A vicious cycle can ensue, in which poor nutrition exacerbates weakness, and weakness in turn limits food and liquid intake.
Signs of insufficient intake of calories may be obvious, such as excessive and rapid weight loss. But for those who like an objective measurement, a body mass index (BMI) of less than 18.5 is considered a red flag. To calculate your BMI, go to www.nhlbisupport.com/bmi.
While you can still swallow and chew safely, take in foods and liquids that are dense in calories, such as high-calorie shakes and bars, and high-protein foods like meat, fish and eggs. Drink plenty of fluids to avoid dehydration. I try to eat high cholesterol meals as well as high caloric meals. I will discuss the high cholesterol portion of that statement later.
When eating and drinking are no longer safe because of fear of choking, or when eating a meal takes so long you become exhausted, it’s time to consider a gastrostomy, or PEG, tube. PEG stands for percutaneous endoscopic gastrostomy tube, which relates to how the tube is inserted. The end result of PEG tube insertion is a small tube that goes directly into the stomach from outside, not something that goes through the nose or down the throat.
Most people find it’s much more comfortable and easy to use than they thought it would be.
A very active online forum at www.als.net/forum is operated by the ALS Therapy Development Institute (an ALS research institute in Cambridge, Mass., supported by MDA) and provides a variety of opinions and experiences with the PEG tube and other aspects of ALS therapy.
From an anonymous ALS patients post: “Best thing I could have done! No more choking, no more dehydration, no more weight loss. ... When I got mine I was still walking and drinking normally but having trouble with food, and I’d lost 35 kilograms (77 pounds). It would be fair to say I was in denial, and it took a while for me to adjust to the idea of having limited food intake. Now I can’t believe I was so silly.”
Noninvasive ventilation can prolong life despite a decline in respiratory muscle function.
As the muscles involved in respiration — the diaphragm and the intercostals, which are between the ribs — weaken, it becomes harder and harder to move enough air in and out of the lungs. This is especially true when lying on one’s back, as the weight of the abdominal organs creates even more resistance for the weakened diaphragm. I haven't had problems breathing while on my back and my FVC is still at 85%, but I have noticed needing to take additional breaths during sentences.
In recent years, a large percentage of ALS patients have opted for “noninvasive ventilation,” or NIV, to help them with their breathing. NIV delivers air under pressure (with a normal percentage of oxygen, not an oxygen supplement) to the lungs via a face mask or mouthpiece.
A 2007 study showed starting NIV earlier prolongs survival better than starting it later, when respiratory function is worse. This study used 65 percent of normal forced vital capacity (the amount of air one can exhale after taking in a deep breath) as the dividing line between early and late intervention. People who started using NIV when their forced vital capacity was at least 65 percent survived an average of 329 days longer than those who started it when their FVC was lower than 65 percent. NIV can be used for as many hours of the day or night as the person wishes and can easily be taken on and off.
Although NIV may prolong life by months or even sometimes years, for indefinite survival with ALS, “invasive ventilation,” which means ventilation through a tracheostomy tube, is almost always required. A tracheostomy is a surgically created opening in the trachea. Not only the delivery route but the type of ventilation device used with it provides for more complete substitution for normal respiratory muscle function than does NIV.
Surprisingly few studies have followed the course of people with ALS who have opted for invasive ventilation. In fact, many studies use “death or tracheostomy” as an end point, implying that these are approximately equal. That, however, is certainly not the case, so it may be that following people with tracheostomy ventilation until death would take so long the study could not be wrapped up in a timely fashion.
A small study published in 2003 in the journal Neurology found that, out of 70 people with ALS in Tokyo who opted for tracheostomy ventilation, 33 survived more than five years on it. In that group were three people who lived for 10 years on tracheostomy ventilation and two who survived for 18 years. The most common cause of death was pneumonia, followed by cardiovascular disease.
The down sides of tracheostomy ventilation are that it requires respiratory care that poses a significant burden on family members or costs a great deal if professionals are hired to help, and that it may allow for prolonged survival even when all voluntary muscle movement has been entirely lost and even communication is difficult. Still, many people are happy with this option.
From an anonymous ALS patients post: “My wife decided to follow the doctor’s suggestion and get her trach early,” noted an ALS TDI Forum visitor in March. “It’s been over two months now, and it has made a huge difference. She looks 10 years younger, has good color, and hasn’t taken a nap since the procedure. She was on BiPAP about 17 hours a day before the procedure. Her oxygen saturation has been excellent. ... Caring for her can be a bit overwhelming at times, but it sure is a lot better than the alternative. We are convinced we made the right decision!”
Friday, August 20, 2010
ALS has so many facets and so many varied symptoms. Lately, one in particular, fasciculations or twitches of muscles throughout the entire body has been causing me much discomfort and distress lately. If you’ve ever had a twitch under your eye or a finger twitching, in ALS, it is a little different. It feels as though the muscle is rippling underneath the skin much like a snake belly ripples as it propels itself along. Mostly, they are small and distracting during the day because I am able to still move about so much and not notice them (as much). Occasionally, there can be a sudden twitch like a rogue wave in the ocean that causes a limb, finger or arm to actually move a bit. I hate it when this happens while I am trying to control the computer mouse… :-)
As I said, this isn’t so bad during the day, but just try to sleep with this going on all over your body. The doctors say that there are no drugs to subdue this symptom, but it can be masked by taking Valum or other relaxants prior to bedtime. I tried baclofen for a long time to combat this, but it appears that I don’t have the symptoms that are best suited for baclofen (i.e. muscle cramps and/or spasms: more on muscle cramps in a moment). Clonezepam has been prescribed for anxiety, but it has a side effect of subduing fasciculations. I take 1 mg of this approximately 2 hours prior to bed. It works faster than this to make me tired, but when I hit the bed, I want to be out immediately and not lay their feeling these movements.
Take a look of the video to get a better idea of what I’m talking about. The lighting had to be just so… to cast shadows in the proper way to make them visible to the camera. These occur in my upper arms, chest, calves, neck, tongue, etc. sometimes I believe that I experienced fasciculations far more than the normal ALS patient. Also, I truly believe twitches are the beginning signs that those muscles are beginning to atrophy. My legs have been strong for almost 4 1/2 years, but are now starting to show signs of significant atrophy. My forearms and hands don’t really experienced twitches anymore and they are almost totally useless. All in all, I realize that I am a slow progression example and thank God every day for the many additional years that I have been granted. It angers me and upsets me deeply when I hear stories of people who are affected by ALS in the more traditional two-year timeframe. This shitty disease needs a cure, and fast!
* This was dictated with Dragon Naturally Speaking ver. 10 Pro speech recognition software. Please excuse any "Speakos" I may have made. :-)
Thursday, August 19, 2010
Saturday, August 14, 2010
Friday, June 11, 2010
By ANNE LINDBERG
St. Petersburg Times
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PINELLAS PARK, Fla. — Steve Franks was stunned when the doctor told him he had ALS.
"I'd heard of it, but I didn't know what it was,"Franks said. "The diagnosis changes your life significantly, at least mentally, trying to get your head wrapped around it."
ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig's disease, attacks nerves and causes degeneration of the brain and spinal cord. Victims lose the ability to control their muscles and eventually end up paralyzed and unable to breathe on their own. They never lose their ability to think or feel, however. Most victims die within two to five years after being diagnosed.
There is no known cure.
Franks, 51, has beaten the odds so far. He was diagnosed with ALS seven years ago and, although he had to quit his job as a golf-course supervisor, is living a full life.
He has also become a somewhat reluctant spokesman for ALS awareness. Reluctant because he is not typical of most victims, and he fears that people unfamiliar with the ravages of the disease will look at him and think ALS isn't so bad.
"That's one of the frustrations I have,"Franks said. "The general public doesn't realize what a cruel and horrible disease it is."
On the other hand, Franks sees himself as lucky because the slow progression of the disease enables him to help raise people's awareness about ALS. If more money were funneled into research, Franks said he believes discoveries could be made that would slow the progression of the disease for all sufferers and allow them to live normal lives.
"There's not enough of us to make the government and the pharmaceutical companies spend money on research,"he said. "We're just not a good return on investment. That sounds horrible, but it's the truth."
So when the ALS Association Florida Chapter created its "Piece by Piece"campaign, Franks jumped at the chance to be in charge of it. The campaign is composed of 150 legless, armless mannequins. Each wears a T-shirt with the name, birth year and year of death of an ALS sufferer.
"It's a metaphor for how Lou Gehrig's disease steals your body piece by piece,"Franks said.
Since the campaign began in January 2009, Franks has hauled the mannequins about 10,000 miles — all over Florida and, most recently, to Washington, to promote awareness.
"That's hard, telling your kids,"Franks said, tearing up at the memory. "It was hard on them. Hard on my wife. Hard on my mom."
He added, "It's important for people to know how devastating this disease is. Not because I want sympathy. But until there's an uprising or a big push with awareness, there won't be funding that leads to research."
Wednesday, May 26, 2010
To someone who is newly diagnosed, what can you say? How can you make them feel as though the entire world hasn't just crumbled before them?
This is one of the most difficult things that I have been presented with over the past going on five years. We found the other PALS (People with ALS) in the first few weeks after being diagnosed. This was incredibly important in order to have someone to listen to you who knew exactly where you are coming from, and for me, had a wife that could listen to Julie and to understand what her concerns, fears and questions were.
I have surmised this: God has a plan for each of us and I believe he only puts trials in our life that he knows we can handle. Also, it takes an extremely strong individual to go through ALS with a good attitude and optimism to help others and to be a strong soul for those that we love around us.
Put those two things together, and that means that God thinks you are just such a person. Newly diagnosed patients are, of course, new to this reality and this news. Although it never stops shocking you each day that you're dealing with this, it does however, get easier to live with and to accept. What are you going to do, crawl into a hole and be depressed all day, no fun to be around? No, you must continue living and taking each day one at a time to slowly adjust to your new reality. You can do this pissed off, or you can slowly come to peace with it. It is all a decision that you may! (and of course, don't shy away from antidepressant help) This is not a weakness or a lack of faith in God, it just readjusts the chemicals back to the point at which they were before you found out this news and drove them to depletion.
My thought was to keep working at my job, but then it became apparent to me that I should be spending the most capable and energetic years with my family and kids. I quit work approximately 2 years ago and feel so much better that I have spent more quality time with my family than I probably would have spent over the next 10 years.
The newly diagnosed ALS patient will become stronger and they will find something that gets them up every morning and find something that they are passionate about to give them that drive. It is crucial that you discover this and it took me over two years. I kept asking why me? Why would a young guy with two children be afflicted with a terminal disease? What good could come of it and if God has a plan, I would like to know what it is. That is certainly not to say that you will be in a terrible situation in the near future, it is just to encourage you that this shock will subside. For sure, whether in two months from now or one year from now, you will find peace with this situation and a place from which to make a difference in the world. It is not for you to be strong for yourself, but for you to show others how life is to be lived no matter what life has thrown at you.
1. Don't overwhelm yourself with Internet searches and research just yet. Focus on life and fun! Intensely love those around you!
2. Don't talk about ALS and your future after 6 PM each evening. Rest, relax and don't let this topic take over all the conversations with your wife or other family. It does no good to help you fall asleep in the evening.
Friday, May 14, 2010
We are excited to do a little bit of traveling this summer and possibly a couple camping trips. The drive to Mount Rushmore, Michigan and then flights to Texas for national rally and flying back home. Friends of ours have volunteered to help our family camp through helping set up tents, and carrying all of the assorted gear. Of course, the boys know how to do all this, but a father generally take care of the majority, at least in my camping experience. Julie enjoys camping (somewhat), but definitely could do without all of the set up and tear down work. Steamboat Lake and a nice campsite in Rocky Mountain National Park are our favorites. We would like to also visit Yellowstone and camp near Old Faithful geyser.
Doing all of this is definitely getting harder with the continued progression and weakening of my arms. Now, my neck muscles are getting into the act (act of not working very well), and this is contributing to weakness and fatigue quite often during the day.
Recently we went to a ALS fundraiser, and walking through the tables for the silent auction items, with my head looking down, turned out to be a very difficult task. I find myself either wearing my neck brace or trying to balance my head in a very neutral, straight up position.
Experimenting with usage of different mice, the mouse head tracking unit called "Headmouse Extreme" and also trying to stay on top of training my speech software as my voice changes. I still very much enjoy being on the computer, updating all my social networking sites and staying attuned to all the latest technology.
Tuesday, May 04, 2010
currently I use nuance, Dragon NaturallySpeaking 10.1 professional because my voice is still usable. After that, options become much more expensive and it depends on which muscles have stopped working. You could use a head mouse extreme to communicate with the computer and type words for it to speak or you can go all the way up to the Dynavox. I also started doing something called "voice banking" in order to have words and phrases in my own voice available for when I lose it. www.modeltalker.com has software to do this.
We lost a dear friend to ALS on April 30, 2010, Joe Eades. Joe had ALS for approximately 2.5 years and his progression was fairly quick in the last six months. As I visited him, I realized that the progression was quicker than he and his family could keep up with as far as making the proper adaptation arrangements for the bathroom, wheelchair and speech tools. It affected me very much so, as Joe was the first close friend that I had known to pass away from ALS. we will all miss Joe very much, but have solace in the fact that he is now free from the muscle atrophy and the deteriorating body.
Things with me have been going fairly well with a little bit more progression in shoulders and wrist muscles. I notice my speech being affected a little bit more, but only late in the day or after I have been talking for a long time. I never realized how much the tongue is used in chewing food. A little bit of atrophy can make it extremely difficult to move food around and then talking is even more difficult when the tongue is worn out. However, I am still using my speech software successfully even to write this blog post. Dragon naturally speaking version 10.1 Pro from nuance has been working excellent for me. I tried to speech recognition tool that comes default with Windows 7, but it is nowhere as accurate even after a considerable amount of time training it.I know that I should be working on my voice archiving for use with speech computer tools in the future, but as of yet, I have only recorded approximately 25 to 30 different sounds, words or phrases.
May is ALS awareness month, so get out there and do anything you can to support ALS awareness and fundraising!
Sunday, March 21, 2010
Wow, what a week. Make that three weeks actually. We were so excited to leave on our Eastern Caribbean cruise and we did all the preparation to get ready and pack. Everything was uneventful getting there and we were amazed at how large our suite was with 150 ft.² of our own balcony space, our own butler, breakfast, lunch or drinks in the room and a special VIP only restaurant to attend. The cruise itself when it really well. First we stopped in the DR and then went on to the US Virgin Islands/St. Thomas and then on to the British Virgin Islands/Tortola. (Only about 10 miles apart) of course on a cruise line, we went at around 5 kn all night cruising as far south as 17° latitude before heading back north to Tortola. The weather was beautiful and we really enjoyed the Virgin Islands. We did not get off the boat at Samana and that the reports were not that great. We spent Thursday at sea and on Friday morning the ocean was too choppy and the swells too large to allow for tendering service to Great Stirrup Cay. We slowly headed back for Miami at about 7 kn the entire way. We didn't have that far to go in the made for extremely smooth sailing. Overall, a great trip. Aside from a three-hour delay in Miami and the ground crew forgetting to load luggage on the plane, we finally got home at around 1 AM Saturday night.
as they say, "if you play, you pay!". Julie started to not feel well in the airport and it became much worse on Sunday and by Monday she was diagnosed with bronchitis. That then travel to me and I have been sick much of the entire week. We were able to get much done and did a lot of sleeping while the kids were in school. Luckily they had a good week at Dennis and Becky's house and none of them took ill. So, we're just starting to get better win yesterday morning I slipped on the ice and slammed the back of my head in to our concrete step. Reluctantly, four stitches later... I still have a headache and suspect it will last a number of days more. Stitches will be removed on March 31, 2010. I definitely thought it was a fitting title-cruising to a bruising!
Friday, February 12, 2010
Wednesday, February 03, 2010
Wednesday, January 27, 2010
In so many ways God tests us each day, and yet, here again, is another one of those tests. Julie and I were mad, blamefull and overall very unpleasant during the whole ordeal. It could have been a lot worse if I had been trying to explain to Julie or anyone else with able hands where the water valve was. As it happened, I was able to get to it and have my nine-year-old help me pull the panel off. Now, the carpet has been pulled back, the pad has been cut away and two of the drywall sheets have been pulled off the ceiling. In the end, the worst thing may be some cuping of the wood floor upstairs. What seems so bad at first, may not be that bad with the proper perspective.
Today I am doing phone interviews with www.Zap2It.com, www.RealityNewsOnline.com, www.TVGuide.com
Friday, January 08, 2010
I have been a part of this forum for years now and consider it extremely important. Personnel at ALSA and ALS TDI have previewed the show and say that it is one of the best that they have seen. People in these organizations would certainly know how we all feel. "Live for the Moment" was shot almost one year ago and we're extremely grateful for the opportunity. We've received the opportunity to travel and make memories with our family, but most of all, to achieve our number one goal of raising awareness, interesting volunteers to help ALS families and hopefully additional funding to find a cure.
The show is ultimately about living for the moment even in the face of adversity or after a life-changing event whatever it may be. I thank God every day for a slower than normal progression, but since the show was shot, my arms and hands have become significantly more atrophied. My wife now helps me shower, dress and while I can start feeding myself, I usually tire fairly quickly and she finishes feeding me. No one understands better than us PALS the realities of ALS, but this story reaches a larger audience and encourages living each day to the fullest and as if it were your last no matter what your situation may be. Too many people wait until it's too late and may lose focus on what's most important in life (family) or on their dreams.I am an enthusiastic and optimistic guy. I'm not saying that ALS is easy, but I certainly feel strongly that it cannot be dealt with when a negative attitude is present. I have done my best to bring awareness and resources toward a cure for us all. I'll await the full airing of the show to comment further and hope you will find it inspirational. In a TV world that is showing crap like "Beavis and Butt-Head" Or "Jersey Shore", etc. I for one support any show that brings hope, inspiration, focus and family to the forefront...
Wednesday, January 06, 2010
This was dictated with Dragon Naturally Speaking ver. 10 Pro speech software. Please excuse any "Speakos" I may have made. :-)