Hi Everybody,
Sorry it's been a while since the last update. I am just getting settled back in after my fishing trip to the East Cape in the Baja. It was awesome to get away for a stretch and it's also good to be back home. In all, there were 11 of us that went and some of us fished for 6 days in a row. For a seriously untanned dude, that is a lot of workout for the sunscreen. Also, getting up at 5:45 and folding in plenty of cervezas while watching the NBA and NHL finals at the only bar in town made for some long days. But as they say, "it's all good." We had a fishing tournament format built into the week and since none of the guys that went live on the coast we called it the "Inaugural No Shore -Offshore Derby" and actually raised about $500 for ALS in the process due to some generous donations by some of the winners. We are now hoping to do this on an annual basis as an ALS fundraiser "angling for a cure," as one of my buddies suggested. Our plan is to go from 3 boats to 7 boats next year, so need 28 anglers to participate. Let me know if you are interested.
So, just a quick note about the Luau from 5/30. We had a little jam session there and someone captured our rendition of "ice ice baby" on video. You can check it out on Youtube.com at this link if you are interested. I was a little disappointed that the bass conga didn't come through, but hey, I'll get over it. If you are interested, here's the link: http://www.youtube.com/watch?v=wpM0-MRL-nI
Now, on to much less frivolous news. A few weeks ago, as part of their ongoing fund raising efforts, our girls decided to tag on an ALS fundraiser to our neighborhood garage sale and rallied our friends to bring stuff to our house to sell. The original idea was for folks to bring the stuff that they didn't want to sell for themselves and our girls would sell it for the benefit of ALS research. Well, people didn't just bring the stuff they didn't want to sell, they brought EVERYTHING. Some folks even had their own sales and brought the proceeds to our house to donate. They also had a bake sale and lemonade stand and one of our little buddies even wore a "watch me juggle for 50 Cents." All the proceeds were donated to ALS - TDI and all in all, they raised almost $2900.00. Thanks so much to all who participated, it means so much to us and to all who are suffering with this health crisis. I'm very proud of the girls for all the effort and thankful for all the help.
On the ALS news front, there's a therapeutic molecule that ALS-TDI has found to help ALS symptoms. So far, they can't find any bio tech firms to take it to clinical trials...I guess there's just not enough money in "small diseases" like ALS. I just hope somebody out there finds a way to make it work. You can read more about this at www.als.net on the message boards.
Peace,
B.
Wednesday, June 17, 2009
Friday, June 5, 2009
Quick Note re: ALS Forum
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.
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.
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.
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