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.
Tuesday, May 26, 2009
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
Friday, May 8, 2009
So..after a day of blogs...
You might be tired of me, this being already my fourth or fifth post of the day. I'm probably breaking all kinds of social media protocol. I've been a Lion today for ALS, posting letters, rallying for donations, hoping for change. Change we can believe in, to borrow a recent and resonant campaign slogan. Once again in my life, I care not for protocol. Never have been much for it, to be honest. If you know me, you know that to be true.
I am sad tonight because we could not attend a dinner party that was specifically planned as a "safe" night out for us with close friends. Amazing friends actually, that know we can't really go "out" to restaurants anymore and who are sensitive to our situation and care extraordinarily about those issues. We literally got to the door to go out and H just had to say she couldn't do it. Her neck was tired, her voice was weak, her ability to have cheer had gone. I can only imagine how difficult that is for her, knowing her friends wanted her and needed her in some way. This is the life of denial that ALS brings us all.
After a late soccer game for J, one of freezing cold and blowing wind, I made my way to our friend's house to share a few minutes and a glass of wine, without my wife. I brought home some excellent food that was especially prepared for her gluten free diet, which she had no heart to eat. I'll admit I did coax her to a few bites of the special cheesecake Laurie, i assume, had made for her.
Strong as we may be, or pretend to be, this is very hard and my heart breaks a little every day. She is such a strong woman, it is hard to see her weak. We did make it to a Mother's day poem reading that R's 4th grade class put on for all the moms. R's poem concluded with "But I will always remember you for loving me, no matter what happens." I think that took a bit out of both of us, only because the "what" that will happen looms over us very large. It must have been hard for her to write, because she is a considerate child and i'm sure these words did not come lightly to her. A beautiful, innocent 9 year old should not have to contemplate such things.
If you will induge my poetry for a moment...
My heart is pure rock strung up on a frame
pierced in the middle cracking so slowly towards it's edges.
Where my girls are concerned, it cracks more than most,
like wet leather in the sun, pulling harder towards the post.
I pray that it does not break
Good night my friends. God speed on your travels to Washington or for the longing within your hearts, whatever they may be.
b.
I am sad tonight because we could not attend a dinner party that was specifically planned as a "safe" night out for us with close friends. Amazing friends actually, that know we can't really go "out" to restaurants anymore and who are sensitive to our situation and care extraordinarily about those issues. We literally got to the door to go out and H just had to say she couldn't do it. Her neck was tired, her voice was weak, her ability to have cheer had gone. I can only imagine how difficult that is for her, knowing her friends wanted her and needed her in some way. This is the life of denial that ALS brings us all.
After a late soccer game for J, one of freezing cold and blowing wind, I made my way to our friend's house to share a few minutes and a glass of wine, without my wife. I brought home some excellent food that was especially prepared for her gluten free diet, which she had no heart to eat. I'll admit I did coax her to a few bites of the special cheesecake Laurie, i assume, had made for her.
Strong as we may be, or pretend to be, this is very hard and my heart breaks a little every day. She is such a strong woman, it is hard to see her weak. We did make it to a Mother's day poem reading that R's 4th grade class put on for all the moms. R's poem concluded with "But I will always remember you for loving me, no matter what happens." I think that took a bit out of both of us, only because the "what" that will happen looms over us very large. It must have been hard for her to write, because she is a considerate child and i'm sure these words did not come lightly to her. A beautiful, innocent 9 year old should not have to contemplate such things.
If you will induge my poetry for a moment...
My heart is pure rock strung up on a frame
pierced in the middle cracking so slowly towards it's edges.
Where my girls are concerned, it cracks more than most,
like wet leather in the sun, pulling harder towards the post.
I pray that it does not break
Good night my friends. God speed on your travels to Washington or for the longing within your hearts, whatever they may be.
b.
Dutch Bros Rocks...
Got a note back from Dutch Bros...Good people!
Bill,
Thank you very much for your email. We are more then happy to apply the proceeds from your purchase to the MDA fund. Have an outstanding day!
Adam
Dutch Bros. Coffee
"... to give every living creature you meet a smile!" - The Dutch Creed
-----Original Message from me to them-----
Hi, I purchased some gear on your site the other day based on a promo for the ALS day posted by Kassi. The total was about $50, but I did it the day of her post. I would respectifully ask that you apply my purchase to the ALS contributions. Thank you very much, Bill
------------peace out---------
Bill,
Thank you very much for your email. We are more then happy to apply the proceeds from your purchase to the MDA fund. Have an outstanding day!
Adam
Dutch Bros. Coffee
"... to give every living creature you meet a smile!" - The Dutch Creed
-----Original Message from me to them-----
Hi, I purchased some gear on your site the other day based on a promo for the ALS day posted by Kassi. The total was about $50, but I did it the day of her post. I would respectifully ask that you apply my purchase to the ALS contributions. Thank you very much, Bill
------------peace out---------
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