Grand Sponsor of Hopes & Dreams


Forever In Stitches has been a Grand Sponsor of "ALS Hopes & Dreams" for years, and we intend to continue doing so.

You can visit the page dedicated to Quilters Dream Batting's "ALS Hopes & Dreams" at hopesanddreams.quiltersdreambatting.com/home.html and the list of sponsors at hopesanddreams.quiltersdreambatting.com/sponsors.html. They were also kind enough to also list a blog page dedicated to Forever In Stitches at hopesanddreams4acure.blogspot.com/2014/07/meet-forever-in-stitches-1000-grand.html.

My mother died of Alzheimer's. My sister of MS. A best fried of ALS. With ALS, you know that they are being carried to their death, while in full consciousness, over an extended period of time, being held captive to witness their own demise. During that time the links that bind them with others are cut until they can't even talk, but you know they hear and sense everything.

ALS attacks the motor nerves. The afflicted can still sense everything while at the same time able to do less and less until there is nothing left that they can do!

Dave

Twenty-some years ago I was talking to one of my best friends, David Alderman, who was president of my company, Grihalva Associates, Inc. Dave Alderman asked me to raise my hands above my head. It was easy. 

He told me that he wanted to see how difficult it was for me to raise my hands above my head. He remembered that just a short while earlier he seemed to remember that it was easy for him, too. But now it was not. Could it have been just age? Limited range-of-motion creeps up on you and you don't notice [similar to not being able to touch your toes any longer]. We were both in our mid-forties at the time.

Dave showed me that he could not raise his left arm higher than his shoulder. Being a stout, strong, man the situation troubled both of us.

Dave & I 11 days before my wedding to Ruth. At the wedding Dave was wheelchair-bound.Shortly thereafter he was diagnosed with ALS [Amyotrophic Lateral Sclerosis or Lou Gehrig's disease]. 

He rapidly deteriorated physically. He quickly became limited and then bound in a wheelchair. He resigned his position to seek ways to make his mark on the world before he died. The time turned out to be much shorter than he or his wife had planned upon. 

As Dave, shown on the left with me, moved from one level to the next, always lower, his cheerful, gregarious nature remained. The picture was taken 11 days before My wedding to Ruth. By the day of the wedding Dave was wheelchair-bound. Dave was fortunate that his wife, Helen, was a nurse.

When you have a friend with ALS, you help with things you did not think you would normally do. Things that are certainly not "guy things". Things such as helping them urinate.The end comes after ALS has "disconnected" all of the brain from the muscles by destroying the nerves. This destruction also includes the muscles needed for breathing. 

The person with ALS and their friends are certainly not the only ones who suffer. Those in the immediate family loose a key in their lives. Often, loved ones are instructed in how to administer an overdose of medication in order to limit the suffering.

After a person loses total ability to have any voluntary movement, one basically suffocates due to their inability to breathe. Fortunately for his wife, David died in his sleep.

I pray that our sponsorship will help others. 

Forever In Stitches is proud to announce that we are a Grand Sponsor of "Hopes & Dreams: Quilt Challenge to ALS." In their words: To Give a Handmade Quilt is to Give the Gift of Love.

Phil

Phil Kingsley assisted with the Fall Festival, where I came to know him. He was the brother of my friend Mitch Kingsley and a professor at Bluffton University.

According to Mitch, when Phil could no longer type or speak he was provided with a communication device by a foundation that works to meet the needs of persons with ALS. With his "WinSlate" computer (as it was called) Phil could type words, sentences and entire paragraphs through blinking his left eye. In this way he communicated with his caregivers and visitors, followed email, searched the Internet, and turned on his TV and radio through the "wink of an eye."

The WinSlate support had named Phil "Fast Talker Kingsley". Those of you with whom he exchanged email messages may have seen this description of Phil pop up on your own computer screens. Some read his series of "Adventures in ALS" - some humorous, others more serious - all written on his eye gaze machine.

I would like to share a few excerpts from one of Phil's longer and more serious reflections, "Adventures in ALS: Losses and Gains."

"I am entering a new phase of my progression with ALS, a phase marked by almost total dependency on others for my physical well-being. I have been wheelchair bound for over four months, for about two months incapable of standing even with help. My right hand has been of very little use for most tasks for two or three months. But I always had my left hand for grasping and holding things, pointing, scratching, rubbing, lifting, poking, pecking out words on the iPad. Now my left hand is not much better than my right and I have largely lost those capabilities. ...

"It's interesting to reflect on which losses hit hardest. For example, I adjusted rather easily to no longer eating; I smell food cooking, sit at the dinner table with others who are eating, and watch food ads and cooking shows on TV all without much sense of loss. (Of course, by the time I got the feeding tube, eating had become a joyless, time-consuming chore, so getting my nutrition without eating has really been a relief.) ...

"[Personal] ... grooming ... is pretty much out of my hands. If I look disheveled, my glasses are cocked at a crazy angle, my beard is uncombed or dripping saliva, it's generally not because of something I did or failed to do. This means I often don't look just the way I intend (sometimes I probably look better!), but I worry less about how I look since I can't do a whole lot about it and since my caretakers do a great job of making me look presentable considering what they have to work with. ...

"... loss of the ability to speak intelligibly... is by far the most devastating loss I've experienced. I don't think I have ever felt as alone and desperate as ... when I had my feeding tube put in. The staff were competent and provided good medical care. But most did not seem to understand my condition or the reason for the unintelligibility of my speech. ...

"I have also discovered the limitations of machine-based face-to-face communication. I am certainly extremely grateful for a machine that will generate audible and intelligible speech based on my selecting letters on a keyboard with blinks of my left eye. I use it quite a lot to "speak" words, phrases, sentences, and even paragraphs in dealing with concrete day-to-day problems of living. But when it comes to conversations and other social situations with much give and take, it is an unwieldy medium. ... What my speech machine offers me that I value really highly is access to a writing and long distance communication tool. It is only through email or other writing that I can express complex and subtle meanings, information, thoughts, feelings, and ideas. And I usually won't have the time to do that in face-to-face communication situations. ...

"On a more general note, with ALS there is a profound sense of loss of the future. I probably won't see my grandchildren grow up. How will the lives of my sons, Dan and Mike, and Judy my wife, and my seven siblings and their families unfold? How will things go on the farm I invested so much time and effort in developing organically? How will our natural environment fare over the longer haul? ... What will happen nationally and internationally; I won't see how things play out on a large number of fronts that I have taken a strong interest in - will we ever as a human race take strong enough action on global warming that we will have avoided the worst of the disaster for our children and grandchildren? Will the death penalty ever be abolished in this country? For me (and probably most people) a significant amount of thinking time was devoted to anticipating the future, and now I no longer have that luxury except on a much reduced scale.

"When I was first diagnosed with ALS I knew in the abstract about the losses I would experience. Now I am experiencing them in a concrete, day-to-day way. Despite the losses, I still feel I have a pretty good life. Two of the biggest factors in this are the wonderful people I have surrounding and helping me, and the assistive communication device/computer that I can use to express myself through both long distance communication and for face-to-face communication.

"So I have experienced gains as well as losses. At Frieda House, where the guiding philosophy is to create a family-like setting for the 10 residents, giving them as much independence and as little regimentation as possible, I have met some really wonderful people, who not only take care of me medically but also take the trouble to get to know me as a person and understand my habits and preferences. Without ALS I probably would never have got acquainted with some really good people.

"Another type of gain I've experienced is the learning about my disease and lots of medical information surrounding it. I've learned from many courageous PALS who participate in ALS forums online with information from their own experience of living with ALS. So I have gained considerable new knowledge even though it is not the knowledge that I would have chosen to acquire a year and a half ago.

"Finally I have gained a new sense of closeness with my seven siblings. We have always been close, but my disease and their response have, for me, brought an even stronger feeling of closeness. They have been with me a lot and in many different ways, and it is born in upon me how fortunate I am to have as siblings each of the seven and their spouses."

Phil Kingsley

The Challenge...

• To raise awareness of ALS -Lou Gehrig's Disease 

• To provide quilts & bring recognition, hope, and warmth to the lives of ALS patients 

• To raise funds for research for treatment and a cure

Involvement

To get involved by donating quilts or being a sponsor please go to their web-page at www.quiltersdreambatting.com/HD/ALS.htm. The organization chooses the best quilts submitted throughout the year in the Summer. The ones they judge as best are then put on the web in September, where quilters world-wide can vote on their favorite.

The event's main sponsor is Quilter's Dream Batting. Due to its unsurpassed quality and consistency of their products, Quilter's Dream Batting is the only batting we use in the shop. It is a coincidence and a pleasure that they also sponsor the challenge!