ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Sunday, May 17, 2009

Nothing Is Ever Easy For Those Dealing With ALS

Below is a story about a family spending time and money and effort trying to advance the fight against ALS in Washington last week, and they didn't exactly encounter the friendly skies.

Following is from their complaint registered with USAirways. It is a good example of how we need to educate the public on the basics of ALS and respect. This kind of travel challenge reflects the rampant lack of public understanding of ALS and the constant difficulties that it presents to patients and caregivers. It also speaks to our social fabric and that our respect-for-life talk is sometimes better than our respect-for-life delivery.
Sent: Thursday, May 14, 2009 2:34 PM
To: Customer Relations
Subject: Complaint, Travel completed, Disability assistance
Importance: High
Salutation: Mrs.
First name: Glenda
Last name: Patterson
Category: Complaint
Travel time frame: Travel completed
Nature of feedback: Disability assistance
Origin city: WashingtonDC
Destination city: Orlando FL
Flight number: 1189
Travel date: 05/13/09

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
www.usairways.com at 5/14/2009 2:34:05 PM.

2 comments:

  1. I understand that this is the same gentleman who also is a veteran and coping with ALS. He was in Washington DC to lay a wreath at the tomb of the Unknown Soldier. Two days following that event he was on Capitol Hill asking for more research dollars to cure this disease. Leave it to U.S. Airways to publicly abuse a veteran and a model citizen who has lost his voice. What ever happened to, Fly the Friendly Skies? Did the airlines learned nothing from Captain Sully?

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  2. I am absolutely LIVID that they had to end their amazing DC journey surrounded by fools such as this US Airways pilot. I look forward to seeing that he is taught a very serious lesson-karma will find him.

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