One of my friends posted a link to the ALS Forum, which has a research based angle on what's up in that part of the ALS world. There are a couple interesting articles there right now, one related to IPLEX and the other related to the familial enzyme SOD1 that is linked to the hereditary cases of ALS. Here's a link:
http://www.researchals.org/
On the personal side, I'm headed off to Mexico for a fishing trip with a great group of friends. On one hand, it is hard to leave H, but she is in good hands here with family that came out to visit and friends around the neighborhood. Hopefully this break will rejuvenate my spirit a bit and the ocean and blue water is major soul food for me. (So, of course we live in Colorado!) I will create a Mexico blog to post photos, and news from the trip. We have a mini fishing tournament set up, so that should be fun. We are calling it the "No Shore - Offshore Derby," since not one of us lives on the coast.
Also, a little bundle of joy was brought to our house yesterday. Crystal, H's step-sister just had a baby 3 weeks ago and she came out to visit. Parker is so cute, and H was ALL SMILES yesterday with him in her arms. She just absolutely LOVES babies!
Peace,
B.
Friday, June 5, 2009
Monday, June 1, 2009
Some awesome Friends and times
Hey All,
I just wanted to say, once again, how great it is to live in a place where people care and are so supportive. We still have meals delivered to the house regularly, and we still have friends coming in to help out and hang out with Heidi, and we are humbled by this every day. Even with that awesome support, we still have seen this neighborhood's families go way beyond what I would ever expect.
This is evidenced by a Luau party that was thrown "for us" but also as a fundraiser for ALS-TDI here at the end of our cul-de-sac. There was a big tent, catered food, amazing donated deserts by my friend that I mentioned in my last blog in the food service business., a shot "luge" a DJ and plenty of adult beverages to go around. This was all the result of a conversation I had with one of my friends a couple months ago answering the question "what can we do for you?" More people want to help than we "need" to help with our day to day issues, and so I offered the possibility of another party like the one we had a couple years ago like this. With that, the ball was set in motion. Several families ran with it and the result was a great time had by all, and I believe something like $1,400 raised for ALS research. Another of my friends from Hawaii heard we were having a Luau, so proceeded to send out fresh leis from the Islands so we could be authentic and feel a little of the Aloha. Two of my musician buddies played a couple of acoustic sets, and I even got to "bang the skins" of my conga/bongo set and sing a little, which always puts a smile on my face, though my skills are somewhat, shall we say, unrefined.
Heidi stayed a good bit longer than I think even she expected and had a smile on her face all night, which is priceless to me right now, and I'm sure is to many of you, so Thank You SO Much.
So, in keeping with my last post...we are here doing our best to live life. Taking the pain one dose at a time, smiling almost as much, I hope. It's all part of life, I suppose, though I'd be happy to do without the pain part of it for a while. I'm sure lots of you out there reading this have a photo or two from the party, so if you send them my way I'll post a few here or on my facebook page. I have a pretty funny one that I'll put up tonight. One of my buddies wore a wetsuit and carried his wind-surfing board around for the first hour of the party. Classic.
A couple of other things going on. Our Girls are on the fundraiser bandwagon and have decided to "sell stuff that other people don't want to bother with" at the neighborhood wide garage sale on June 12/13. All proceeds will go to ALS research, once again, so if you live local and have some "junk" you want to get rid of you can drop it off at our house and they'll sell it and donate the money. I think they are planning to sell cookies and lemonade and I heard that some of the local teenagers also might be doing a car wash, so come on by.
I, in a stroke of master luck, will still be in Mexico on that day and will have to leave the logistics to Lisa, Phil and others around here that can help get things organized. Lucky me, I mean bummer. ;-)
Also have to send my props out to the local ALSA chapter (Rocky Mountain) who sourced a loaner power chair for us that has a tilt function on it and a special chair for the shower. It fits H better than the one we had and hopefully she'll be comfortable for longer periods of time. It does not fit perfectly, but is an improvement over what we had, so that's all good. We like positive steps around here. I met a few of the nice folks over there and they have lots of stuff for PALS that help with day to day things like mobility, bathing and some technology. Suzanne, their care specialist/coordinator was a huge help and if you are a PALS or CALS in this region, you would be well advised to check in with them and get registered, so you can borrow from their "loaner closet" or participate in some of their programs. In fact, they have an on-line auction going right now with some really cool items in advance of a fundraiser that they are putting on. You can check out the items here and bid if you like.
http://www.blacktie-colorado.com/auctions/index.cfm?fuseaction=Auctions.Landing&aid=215
I believe bidding is open through the day on Wednesday this week.
Ciao for now.
B.
I just wanted to say, once again, how great it is to live in a place where people care and are so supportive. We still have meals delivered to the house regularly, and we still have friends coming in to help out and hang out with Heidi, and we are humbled by this every day. Even with that awesome support, we still have seen this neighborhood's families go way beyond what I would ever expect.
This is evidenced by a Luau party that was thrown "for us" but also as a fundraiser for ALS-TDI here at the end of our cul-de-sac. There was a big tent, catered food, amazing donated deserts by my friend that I mentioned in my last blog in the food service business., a shot "luge" a DJ and plenty of adult beverages to go around. This was all the result of a conversation I had with one of my friends a couple months ago answering the question "what can we do for you?" More people want to help than we "need" to help with our day to day issues, and so I offered the possibility of another party like the one we had a couple years ago like this. With that, the ball was set in motion. Several families ran with it and the result was a great time had by all, and I believe something like $1,400 raised for ALS research. Another of my friends from Hawaii heard we were having a Luau, so proceeded to send out fresh leis from the Islands so we could be authentic and feel a little of the Aloha. Two of my musician buddies played a couple of acoustic sets, and I even got to "bang the skins" of my conga/bongo set and sing a little, which always puts a smile on my face, though my skills are somewhat, shall we say, unrefined.
Heidi stayed a good bit longer than I think even she expected and had a smile on her face all night, which is priceless to me right now, and I'm sure is to many of you, so Thank You SO Much.
So, in keeping with my last post...we are here doing our best to live life. Taking the pain one dose at a time, smiling almost as much, I hope. It's all part of life, I suppose, though I'd be happy to do without the pain part of it for a while. I'm sure lots of you out there reading this have a photo or two from the party, so if you send them my way I'll post a few here or on my facebook page. I have a pretty funny one that I'll put up tonight. One of my buddies wore a wetsuit and carried his wind-surfing board around for the first hour of the party. Classic.
A couple of other things going on. Our Girls are on the fundraiser bandwagon and have decided to "sell stuff that other people don't want to bother with" at the neighborhood wide garage sale on June 12/13. All proceeds will go to ALS research, once again, so if you live local and have some "junk" you want to get rid of you can drop it off at our house and they'll sell it and donate the money. I think they are planning to sell cookies and lemonade and I heard that some of the local teenagers also might be doing a car wash, so come on by.
I, in a stroke of master luck, will still be in Mexico on that day and will have to leave the logistics to Lisa, Phil and others around here that can help get things organized. Lucky me, I mean bummer. ;-)
Also have to send my props out to the local ALSA chapter (Rocky Mountain) who sourced a loaner power chair for us that has a tilt function on it and a special chair for the shower. It fits H better than the one we had and hopefully she'll be comfortable for longer periods of time. It does not fit perfectly, but is an improvement over what we had, so that's all good. We like positive steps around here. I met a few of the nice folks over there and they have lots of stuff for PALS that help with day to day things like mobility, bathing and some technology. Suzanne, their care specialist/coordinator was a huge help and if you are a PALS or CALS in this region, you would be well advised to check in with them and get registered, so you can borrow from their "loaner closet" or participate in some of their programs. In fact, they have an on-line auction going right now with some really cool items in advance of a fundraiser that they are putting on. You can check out the items here and bid if you like.
http://www.blacktie-colorado.com/auctions/index.cfm?fuseaction=Auctions.Landing&aid=215
I believe bidding is open through the day on Wednesday this week.
Ciao for now.
B.
Tuesday, May 26, 2009
Life...live it if u got it.
So, it's been a while since I've blogged...Been meaning to, but so much seems to be either taking my time or sapping my energy to write.
I have a couple of stories to relay that I feel are important to you my friends. Both of them relate to a topic that is near and dear to my heart, which is the importance of living life while you can. As we live with this disease and see how it takes your strength, it is easy to wish that we would have done more in the early days of it, but we did what we could, and we did much by almost anyone's standards. Still, it never seems like enough in times like these.
A good friend of mine called me up the other day. "Sedg, let's grab a beer, i've got a story for ya." OK, so if you know me, you know i'm pretty much ALWAYS up for that. My Mom likes brown paper packages tied up with string. Stories and beer are two of MY favorite things.
...When the dog bites...when the bee stings.....when you're feelin' bad...just give me a Beer and and a story to hear and then I don't feeeeeeeeeeel so sad. (Don't worry, if you are not a fan of the Sound of Music, then you will think i'm insane and that is OK.)
So, my friend did well last year and decided to buy himself a 2009 BMW M6. I have driven this car and it is an absolute rocket. I screeched the wheels in gears 1,2 and 3 and then stopped on a dime to turn in about 1/4 mile later. Feeling a bit springy on a warm early May day, he decided to take a drive up to the mountains to look at some investment property one evening. Cruising along at just a tad above the limit in the dark, with no time to react, he saw a good sized white tail deer jump in front of his car and proceed to essentially "explode" its head on his car's grille.
The timing was astonishing. The deer was jumping down and had just landed, so it's head was low and it was weight forward on it's front legs. A BMW M6 is an extremely low vehicle. In amost ANY position this deer would have been high enough to be taken out from under it's legs and would have wound up through the windsheild and on my buddy's lap at 85 mph. This would surely have been disastrous, if not fatal to him. As fate, God or Luck would have it, this deer left it's blood and hair on his grille and went predominantly under his car. His airbag did not deploy (which would probably have been a disaster in this situation) and he barely felt the impact.
Be it a deer, a bus, a diagnosis or a bullet, we don't know when our number is up. You can "have it all" one minute and be a grease spot the next. Don't take your life for granted.
Story number two that touched my heart this week. I had a chance to catch up with a friend of mine who is successful in the food service industry. To this end, he has had to travel a lot over the last few years building client bases and attending tradeshows for his employers. Giving this time to his career to support his family, which many of us do or have done in our lives. Well, one day his daughter, who would probably have been about 4 or so at the time, if my chronology is correct, said to him "Daddy, can you come home this week for a visit?" Well, of course that is a tough one to swallow or even argue. Kids are honest in what they say, especially at that age, and this was her perception and therefore her reality. Daddy did not live at home. This bold friend of mine put in his notice a few weeks later and has not looked back. He's still busy and successful in his field, even moreso than before, still works his ass off in terms of hours, but now he spends most of his nights at home and can kiss his kids goodnight a lot more than he used to. He's coaching two softball teams and I imagine will coach a third when the time comes. How will he do it and practically run a good sized company too? Who knows, but I bet he will. That is powerful.
Tonight, I didn't tuck my kids in because I could not let go of H. She was so sad... But they came in and said goodnight and asked if I would tuck them in. H said "Mommy needs Daddy tonight." and so they said "good night, I love you" and left without any spite at all. I hope they saw something that they will remember and require of whomever they find in their lives down the road.
I went to check on them after H fell asleep and found my baby in with my big girl, and they looked so cute. No matter how much they bicker and the 4 year span between them seems to keep them at odds, they knew they could count on and comfort each other when they needed it and that so much rocks, I can barely take it.
Also, neighbors are throwing a massive Luau party for us this weekend on our cul-de-sac and all proceeds will go to support ALS-TDI and their efforts to find a cure before it is too late. If you can make it, we'd love to see ya! We are hoping to raise the number on the fundraising goal on the "hope for Heidi" page.
https://hopeforheidi.alscommunity.org
If you can make it, just show up at the cul-de-sac, or let me now and I can get you an e-vite. Rumor has it i'll be pounding my conga drums w/ my buddies from 5 to 6 before the real music starts (i.e. the DJ)
Peace.
B.
I have a couple of stories to relay that I feel are important to you my friends. Both of them relate to a topic that is near and dear to my heart, which is the importance of living life while you can. As we live with this disease and see how it takes your strength, it is easy to wish that we would have done more in the early days of it, but we did what we could, and we did much by almost anyone's standards. Still, it never seems like enough in times like these.
A good friend of mine called me up the other day. "Sedg, let's grab a beer, i've got a story for ya." OK, so if you know me, you know i'm pretty much ALWAYS up for that. My Mom likes brown paper packages tied up with string. Stories and beer are two of MY favorite things.
...When the dog bites...when the bee stings.....when you're feelin' bad...just give me a Beer and and a story to hear and then I don't feeeeeeeeeeel so sad. (Don't worry, if you are not a fan of the Sound of Music, then you will think i'm insane and that is OK.)
So, my friend did well last year and decided to buy himself a 2009 BMW M6. I have driven this car and it is an absolute rocket. I screeched the wheels in gears 1,2 and 3 and then stopped on a dime to turn in about 1/4 mile later. Feeling a bit springy on a warm early May day, he decided to take a drive up to the mountains to look at some investment property one evening. Cruising along at just a tad above the limit in the dark, with no time to react, he saw a good sized white tail deer jump in front of his car and proceed to essentially "explode" its head on his car's grille.
The timing was astonishing. The deer was jumping down and had just landed, so it's head was low and it was weight forward on it's front legs. A BMW M6 is an extremely low vehicle. In amost ANY position this deer would have been high enough to be taken out from under it's legs and would have wound up through the windsheild and on my buddy's lap at 85 mph. This would surely have been disastrous, if not fatal to him. As fate, God or Luck would have it, this deer left it's blood and hair on his grille and went predominantly under his car. His airbag did not deploy (which would probably have been a disaster in this situation) and he barely felt the impact.
Be it a deer, a bus, a diagnosis or a bullet, we don't know when our number is up. You can "have it all" one minute and be a grease spot the next. Don't take your life for granted.
Story number two that touched my heart this week. I had a chance to catch up with a friend of mine who is successful in the food service industry. To this end, he has had to travel a lot over the last few years building client bases and attending tradeshows for his employers. Giving this time to his career to support his family, which many of us do or have done in our lives. Well, one day his daughter, who would probably have been about 4 or so at the time, if my chronology is correct, said to him "Daddy, can you come home this week for a visit?" Well, of course that is a tough one to swallow or even argue. Kids are honest in what they say, especially at that age, and this was her perception and therefore her reality. Daddy did not live at home. This bold friend of mine put in his notice a few weeks later and has not looked back. He's still busy and successful in his field, even moreso than before, still works his ass off in terms of hours, but now he spends most of his nights at home and can kiss his kids goodnight a lot more than he used to. He's coaching two softball teams and I imagine will coach a third when the time comes. How will he do it and practically run a good sized company too? Who knows, but I bet he will. That is powerful.
Tonight, I didn't tuck my kids in because I could not let go of H. She was so sad... But they came in and said goodnight and asked if I would tuck them in. H said "Mommy needs Daddy tonight." and so they said "good night, I love you" and left without any spite at all. I hope they saw something that they will remember and require of whomever they find in their lives down the road.
I went to check on them after H fell asleep and found my baby in with my big girl, and they looked so cute. No matter how much they bicker and the 4 year span between them seems to keep them at odds, they knew they could count on and comfort each other when they needed it and that so much rocks, I can barely take it.
Also, neighbors are throwing a massive Luau party for us this weekend on our cul-de-sac and all proceeds will go to support ALS-TDI and their efforts to find a cure before it is too late. If you can make it, we'd love to see ya! We are hoping to raise the number on the fundraising goal on the "hope for Heidi" page.
https://hopeforheidi.alscommunity.org
If you can make it, just show up at the cul-de-sac, or let me now and I can get you an e-vite. Rumor has it i'll be pounding my conga drums w/ my buddies from 5 to 6 before the real music starts (i.e. the DJ)
Peace.
B.
Monday, May 18, 2009
Travel Experience on US Airways: Dispicable
Anyone travelling with a disability has it tough. We have not travelled by plane with Heidi since our return from Hawaii about 14 months ago. This story does not make me want to get on a plane any time soon. Especially not on US Airways. This is the chronicle of an experience by a family dealing with ALS on their trip home from the National Advocacy Day meetings and events.
<<<>>>
Oh, I forgot to post this earlier . Here is H's comment about this story: “They should tie that pilot down to a chair for two years and see if he feels like the same kind of arrogant jerk then.”
=====begin story======
Below is a message sent to the ALSA national to alert them to the problem that Ken had. I also wanted all of you to know of the problem he had. Maybe we can remind the airlines of who is the customer. thanks
Below is a story about Ken Patterson (PALS) and Glenda Patterson and their children about their trip from Washington to Florida on the way back from Advocacy Day 2009. Glenda's story is much nicer than Ken's recollection. I thought you should know in case no one contacted you about the problem.. Glenda received a response from the airlines and received a $500 voucher. This in no way should be the end of it. I will be sending the same message to all of the PALS. It is posted on Facebooks and the patients like me website.
From: glenda@kensjourney.com [mailto:glenda@kensjourney.com?]Sent: Thursday, May 14, 2009 2:34 PMTo: Customer RelationsSubject: Complaint, Travel completed, Disability assistance Importance: High; First name: Glenda; Last name: Patterson; Category: Complaint Travel ; Time frame: Travel completed; Nature of feedback: Disability assistance; Origin city: Washington DC; Destination city: Orlando FL Flight number: 1189 Travel date: 05/13/09. Other travelers: Ken Patterson (my husband, a disabled veteran) Tabitha Weeks (16 yo daughter) Kenny Patterson (15 yo son) Samuel Weeks (10 yo son)
Comments: Upon boarding the pilot INSISTED that the battery be disconnected from Ken's power wheelchair for transport even though it is a gel battery and is not required. In fact even the mechanic told the pilot it was safer to leave the battery connected because it was very well insulated. He said no and they escorted me to the chair so I could instruct them in the operation of the chair and disconnecting the battery.
Upon arrival in Orlando, I exited the plane first to help get the chair ready for my husband. While I was doing that, I could see in the window of the plane there were people gathered around our seats and told Phil (last name unknown) they COULD NOT move him without me there.He assured me they would not do such a thing. Ken has ALS (Lou Gehrig's Disease) and has little to no use of his voluntary muscles, therefore he can not speak clearly to make his needs known. I left our 16 year old daughter with him as she is the only other person with the ability to understand him. There is absolutely nothing wrong with my husbands brain and is very likely more intelligent than those that were gathered around him. Phil sent someone up to tell them NOT to move him. The pilot then instructed them to "get this man off of HIS plane".
My husband has a feeding tube as well as a diaphragm pacer and due to the decreased muscle in his diaphragm has issues breathing...none of the airline personnel knew this because they could not understand Ken, even though he and Tabitha tried to tell them not to move him.We were having trouble getting his wheelchair operational when someone on the radio said he was being moved up to the gate. I RAN to where they were wheeling him and hear him crying hysterically and see Tabitha crying because no one would stop so she could understand what he was saying. He had to sit in the aisle wheelchair, in pain for better than 30 minutes while we were getting his chair operational. I could not help work on the chair and tend to my panicing husband who was sliding out of the chair because once again he has little or no use of his muscles.
Ken is a brilliant man, who has not only served his country but also his community as a firefighter and was treated like a incompetent obstical in your pilots quest to clear his plane so he could go home. We have never received such treatment not to mention the physical danger they placed my husband in.We travel frequently as we know our time together is limited due to Ken's diagnosis and feel it is important to make those lasting memories with our children...this is a memory I wish we could erase. I look forward to hearing how this situation is taken care of.
The thought of other physically challenged people receiving this treatment from your pilot's is sickening. Message generated on http://www.usairways.com/ at 5/14/2009 2:34:05 PM.
Jeff Dunlap, Diag. 8/05. ALS, "Lou Gehrig's disease," a progressive degenerative fatal disease affecting the motor neurons, begins at all ages from 16 on up. Every 90 min. a person is diag. with ALS. Every 90 min. a person loses their battle with ALS.
This e-mail was generated by speech recognition software.
<<<
Oh, I forgot to post this earlier . Here is H's comment about this story: “They should tie that pilot down to a chair for two years and see if he feels like the same kind of arrogant jerk then.”
=====begin story======
Below is a message sent to the ALSA national to alert them to the problem that Ken had. I also wanted all of you to know of the problem he had. Maybe we can remind the airlines of who is the customer. thanks
Below is a story about Ken Patterson (PALS) and Glenda Patterson and their children about their trip from Washington to Florida on the way back from Advocacy Day 2009. Glenda's story is much nicer than Ken's recollection. I thought you should know in case no one contacted you about the problem.. Glenda received a response from the airlines and received a $500 voucher. This in no way should be the end of it. I will be sending the same message to all of the PALS. It is posted on Facebooks and the patients like me website.
From: glenda@kensjourney.com [mailto:glenda@kensjourney.com?]Sent: Thursday, May 14, 2009 2:34 PMTo: Customer RelationsSubject: Complaint, Travel completed, Disability assistance Importance: High; First name: Glenda; Last name: Patterson; Category: Complaint Travel ; Time frame: Travel completed; Nature of feedback: Disability assistance; Origin city: Washington DC; Destination city: Orlando FL Flight number: 1189 Travel date: 05/13/09. Other travelers: Ken Patterson (my husband, a disabled veteran) Tabitha Weeks (16 yo daughter) Kenny Patterson (15 yo son) Samuel Weeks (10 yo son)
Comments: Upon boarding the pilot INSISTED that the battery be disconnected from Ken's power wheelchair for transport even though it is a gel battery and is not required. In fact even the mechanic told the pilot it was safer to leave the battery connected because it was very well insulated. He said no and they escorted me to the chair so I could instruct them in the operation of the chair and disconnecting the battery.
Upon arrival in Orlando, I exited the plane first to help get the chair ready for my husband. While I was doing that, I could see in the window of the plane there were people gathered around our seats and told Phil (last name unknown) they COULD NOT move him without me there.He assured me they would not do such a thing. Ken has ALS (Lou Gehrig's Disease) and has little to no use of his voluntary muscles, therefore he can not speak clearly to make his needs known. I left our 16 year old daughter with him as she is the only other person with the ability to understand him. There is absolutely nothing wrong with my husbands brain and is very likely more intelligent than those that were gathered around him. Phil sent someone up to tell them NOT to move him. The pilot then instructed them to "get this man off of HIS plane".
My husband has a feeding tube as well as a diaphragm pacer and due to the decreased muscle in his diaphragm has issues breathing...none of the airline personnel knew this because they could not understand Ken, even though he and Tabitha tried to tell them not to move him.We were having trouble getting his wheelchair operational when someone on the radio said he was being moved up to the gate. I RAN to where they were wheeling him and hear him crying hysterically and see Tabitha crying because no one would stop so she could understand what he was saying. He had to sit in the aisle wheelchair, in pain for better than 30 minutes while we were getting his chair operational. I could not help work on the chair and tend to my panicing husband who was sliding out of the chair because once again he has little or no use of his muscles.
Ken is a brilliant man, who has not only served his country but also his community as a firefighter and was treated like a incompetent obstical in your pilots quest to clear his plane so he could go home. We have never received such treatment not to mention the physical danger they placed my husband in.We travel frequently as we know our time together is limited due to Ken's diagnosis and feel it is important to make those lasting memories with our children...this is a memory I wish we could erase. I look forward to hearing how this situation is taken care of.
The thought of other physically challenged people receiving this treatment from your pilot's is sickening. Message generated on http://www.usairways.com/ at 5/14/2009 2:34:05 PM.
Jeff Dunlap, Diag. 8/05. ALS, "Lou Gehrig's disease," a progressive degenerative fatal disease affecting the motor neurons, begins at all ages from 16 on up. Every 90 min. a person is diag. with ALS. Every 90 min. a person loses their battle with ALS.
This e-mail was generated by speech recognition software.
Monday, May 11, 2009
ALS Story Ideas and Washington events...
On Tuesday, a whole bunch of PALS and CALS and others who care are meeting with their representatives in Congress or the Senate in Washington DC about increasing funding for ALS. We need to find causes and we need to find a cure.
A friend of mine, Peter Shankman, (www.shankman.com) going to send out information about what is going on to his list of people tomorrow on HARO (www.helpareporter.com) , some of whom are looking for story ideas about ALS and what is going on during this week. If you are from his list and wound up here, welcome. There is much to talk about related to this disease, and if you are interested in our story, well, you can find pretty much the whole tale by reviewing this blog starting with the first post from back in January of this year. It chronicles in detail what we have gone through and what we continue to go through as well as lots of side-bars from me about things that need to be spoken about when dealing with this disease.
So many people have told me that this blog has helped them in some way, I can't even begin to count them, and so I keep putting it out there, hoping it will help yet more. Surprisingly to me, most of these people are not affected "directly" by ALS, but have found a message of hope, strength and the reminder that we all need to live this life while we have it and never take anything for granted. Unfortunately, there are thousands of stories that are like mine: people dealing with this disease today, and hundreds of thousands more that have already concluded, yet live on in the hearts of families...All are worth telling.
That being said..there is real NEWS related to this. Here are some angles, some of which could really use a good investigative reporter to get their teeth into.
1) Why is the military now paying any veteran diagnosed with ALS 100% expenses (which cost up to $250,000/year in later stages) and paying things like $12K/mo for living expenses, $75K for housing modifications, 100% for ventilators, wheelchairs, etc. Yet they are not investing in a cure or investigating causes. People with military service are much more likely than the general public to get this disease, but why? They are essentially paying people off, because they don't want to rock the boat and get cut off now that they are getting help (whether or not this fear is founded or unfounded, I have no idea.) But what if something the military is doing today is causing people to come down with ALS later. Why won't they find out? Why will they be prepared to invest hundreds of millions in "care" but nothing in a cure or in it's origins? I want to know, and so do thousands of others.
2) . IPLEX is a promising drug for treatment of ALS. There is a "big pharma" lawsuit that is preventing the manufacturer of this drug from making it available to people that want to try it under a "compassionate use" option which allows people to file a petition with the FDA called an IND (Investigational New Drug) petition. I blogged about it (on March 6 and March 12). Right now, because of political pressure, the Italian Government is the only group that can actually legally get IPLEX to treat ALS. There is lots of weird BS surrounding this drug. Would be a great investigative piece for some bulldog reporter to latch on to and expose. Eddie Esparza has been the chief advocate for securing IPLEX and if you are interested in this angle, I can connect you with him, just leave me a message note on the blog.
3) Since the “swine flu” is so hot, yet such a stupid flash in the pan, I think there’s an angle there. Obama asked congress for an additional $1.5 Billion to combat H1N1 on top of the $6 Billion that is already earmarked for any pandemic outbreak. How many people has swine flu affected? How many has it killed? By contrast, ALS has $45 Million earmarked. .006 of the total. Six dollars in every thousand dollars. It is pathetic and wrong. I need to get my stats right, because I have seen different numbers, but something like 300,000 people have ALS and are going to die from it if no treatment and cure is found. Right now it is 100% fatal. It is not a matter of whether you will die, it is a matter of when. Usually 2 – 3 years post diagnosis. I met the president of ALS –TDI last year in February in Hawaii. He did not have ALS at the time, and seemed perfectly healthy, though several people from his family had died from it. He contracted it and died less than a year later on February 9 of this year:
http://www.als.net/articles/articleDetail.asp?articleID=5346
4) If you are not a reporter, but are willing to invest a few minutes to help us, there is a simple form you can fill out on the link below that will allow you to send your congressman a form letter requesting more funding and awareness for ALS.
http://capwiz.com/alsa/issues/alert/?alertid=13304536&PROCESS=Take+Action
5) If you want a reason YOU should care about this disease, and don't mind a highly charged and somewhat direct viewpoint...read my post from February 25th and the 22nd if you can muster the energy.
here's the link: http://alschronicle.blogspot.com/2009_02_22_archive.html
Thank you very much,
Bill
A friend of mine, Peter Shankman, (www.shankman.com) going to send out information about what is going on to his list of people tomorrow on HARO (www.helpareporter.com) , some of whom are looking for story ideas about ALS and what is going on during this week. If you are from his list and wound up here, welcome. There is much to talk about related to this disease, and if you are interested in our story, well, you can find pretty much the whole tale by reviewing this blog starting with the first post from back in January of this year. It chronicles in detail what we have gone through and what we continue to go through as well as lots of side-bars from me about things that need to be spoken about when dealing with this disease.
So many people have told me that this blog has helped them in some way, I can't even begin to count them, and so I keep putting it out there, hoping it will help yet more. Surprisingly to me, most of these people are not affected "directly" by ALS, but have found a message of hope, strength and the reminder that we all need to live this life while we have it and never take anything for granted. Unfortunately, there are thousands of stories that are like mine: people dealing with this disease today, and hundreds of thousands more that have already concluded, yet live on in the hearts of families...All are worth telling.
That being said..there is real NEWS related to this. Here are some angles, some of which could really use a good investigative reporter to get their teeth into.
1) Why is the military now paying any veteran diagnosed with ALS 100% expenses (which cost up to $250,000/year in later stages) and paying things like $12K/mo for living expenses, $75K for housing modifications, 100% for ventilators, wheelchairs, etc. Yet they are not investing in a cure or investigating causes. People with military service are much more likely than the general public to get this disease, but why? They are essentially paying people off, because they don't want to rock the boat and get cut off now that they are getting help (whether or not this fear is founded or unfounded, I have no idea.) But what if something the military is doing today is causing people to come down with ALS later. Why won't they find out? Why will they be prepared to invest hundreds of millions in "care" but nothing in a cure or in it's origins? I want to know, and so do thousands of others.
2) . IPLEX is a promising drug for treatment of ALS. There is a "big pharma" lawsuit that is preventing the manufacturer of this drug from making it available to people that want to try it under a "compassionate use" option which allows people to file a petition with the FDA called an IND (Investigational New Drug) petition. I blogged about it (on March 6 and March 12). Right now, because of political pressure, the Italian Government is the only group that can actually legally get IPLEX to treat ALS. There is lots of weird BS surrounding this drug. Would be a great investigative piece for some bulldog reporter to latch on to and expose. Eddie Esparza has been the chief advocate for securing IPLEX and if you are interested in this angle, I can connect you with him, just leave me a message note on the blog.
3) Since the “swine flu” is so hot, yet such a stupid flash in the pan, I think there’s an angle there. Obama asked congress for an additional $1.5 Billion to combat H1N1 on top of the $6 Billion that is already earmarked for any pandemic outbreak. How many people has swine flu affected? How many has it killed? By contrast, ALS has $45 Million earmarked. .006 of the total. Six dollars in every thousand dollars. It is pathetic and wrong. I need to get my stats right, because I have seen different numbers, but something like 300,000 people have ALS and are going to die from it if no treatment and cure is found. Right now it is 100% fatal. It is not a matter of whether you will die, it is a matter of when. Usually 2 – 3 years post diagnosis. I met the president of ALS –TDI last year in February in Hawaii. He did not have ALS at the time, and seemed perfectly healthy, though several people from his family had died from it. He contracted it and died less than a year later on February 9 of this year:
http://www.als.net/articles/articleDetail.asp?articleID=5346
4) If you are not a reporter, but are willing to invest a few minutes to help us, there is a simple form you can fill out on the link below that will allow you to send your congressman a form letter requesting more funding and awareness for ALS.
http://capwiz.com/alsa/issues/alert/?alertid=13304536&PROCESS=Take+Action
5) If you want a reason YOU should care about this disease, and don't mind a highly charged and somewhat direct viewpoint...read my post from February 25th and the 22nd if you can muster the energy.
here's the link: http://alschronicle.blogspot.com/2009_02_22_archive.html
Thank you very much,
Bill
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