Sally's Speech

November 8, 2004
Sally's speech

Our friend Sally has ALS.

Sometimes known as Lou Gehrig's Disease, Amyotrophic Lateral Sclerosis is a motor neuron disease with progressive muscular atrophy. At this point it is also inevitably fatal.

Sally is also a bright, witty, charming, and brave woman, with a great family. Last week she gave a speech at an ALS dinner in Philadelphia, held to honor Boston Red Sox pitcher Curt Schilling and his wife Shonda for their efforts on behalf of ALS victims nationwide. Sally used her assistive communication device for the first part, and her three kids completed the speech for her.

She sent us and several other friends and family a copy of her address, and she graciously agreed to my request to post it on this site. It appears on this page, below this introduction.

If you would like more information about ALS, or would like to donate, please go to this website, or the Philadelphia Chapter’s site.

Tell them Sally sent you.

Thanks very much.

Sally's Speech.

I have been asked to speak to you tonight about what it is like to have ALS. I don’t like talking about myself but have agreed to do this so that you may better understand what it is like to have ALS, and how important your support is to all of us who suffer from this terrible illness. It is truly amazing to witness the support of so many in trying to find a cure for this disease, and providing support for patients with ALS and their families until a cure is found.

I am one of the twenty percent of people with ALS whose first symptom was weakness in the muscles of my mouth. I started slurring my words and having problems with swallowing and choking. Most people with ALS begin with weakness in their arms or legs. I haven’t had any problems with that yet.

There are a few people who begin with speech and swallowing problems whose muscle weakness never extends to their arms and legs, but that is a very small percentage. Of course, I am hopeful that I will never develop muscle weakness in my limbs, but the reality is that I probably will. We just have to wait and see what happens and deal with symptoms as they develop.

As you may have noticed, I am speaking to you by means of my assistive communication device. I just wanted to speak to you briefly with this tonight so you can get a feel for what it is like for me to try to communicate every day. Now my children will liven things up and finish my speech for me so that you all don’t fall asleep. Our kids are Eileen, age 15, Molly, age 18, and Kevin, age 21. We are so proud of them and of how they are handling all of this and how supportive they have been. I want to thank them for agreeing to be my voice tonight.

The first time I noticed that I was slurring my words was on a Saturday in January 2003. We were out with friends for dinner and I had two drinks that evening, which I am sure didn’t help. But I knew something was off. It apparently wasn’t obvious to anyone else, but it was very apparent to me. My husband and kids thought I was crazy when I would mention it – they couldn’t hear any difference in my speech. The first neurologist I went to in Wilmington, Delaware, where we live, in the Spring of 2003, wanted to send me to a sleep disorder clinic. Even I knew that that was not my problem.

In July I went to see a neurologist, Dr. Malamut, at Crozier Chester Hospital, who a friend had referred me to. He told me it was likely that I had one of the following: Myasthenia Gravis, MS, Progressive Bulbar Palsy, or ALS. I had done some research and was aware that all of these were possibilities. But since I had no other symptoms and had always been so healthy, I was reluctant to believe I could have anything serious.

When I heard these possibilities spoken out loud, I was in a state of shock. I had gone to the appointment alone because I truly didn’t expect to hear this. As I drove away from the hospital, my eyes wandered to the cemetery directly across the street and I thought how ironic. I drove home in a fog.

A second MRI ruled out the quote best possibilities – Myasthenia Gravis or MS. Who would ever think I would be hoping to just have MS?

Finally, in January 2004, one full year after my symptoms had appeared, my neurologist diagnosed me with progressive bulbar palsy indicative of ALS. At that point, I was not too surprised with the diagnosis, but it hit my husband like a ton of bricks.

That weekend we had plans to take our three children to the Auto Show in Philadelphia. With their busy schedules, it is unusual for us to get together very often for a family outing. We went out to dinner after the auto show and, before taking Kevin back to college, we sat them down and I told them I had ALS. It was the hardest thing I have ever done. There isn’t a very gentle way to break news like that.

We got a second opinion at the Mayo clinic in February, and they confirmed my diagnosis. My neurologist referred me to Dr. Leo McCluskey at the ALS Clinic at the University of Pennsylvania. The ALS Clinic has been such a wonderful support system for us. Everyone is so friendly, helpful, knowledgeable, and responsive.

As my speech has continued to deteriorate, the clinic loaned me the assistive speech device that I am using tonight. For everyday conversations, I type out what I want to say and it converts it to the spoken word. This way, as long as people are patient, I am able to carry on a conversation with people. With this speech tonight, I was able to type it in ahead of time and simply play it for you now.

This device is wonderful in that it allows me to communicate, but it definitely has its limitations. I always thought I had a quick wit, and I must say, my comments definitely lose their impact on a communication device. By the time I type in my funny thought, a new conversation is usually going on, and my little comment has lost its effect.

It is great that the ALS Association was able to let me borrow this speech device because it has taken almost six months to get my insurance company to approve the purchase of this device for me. It is only through the persistence of the staff of the Greater Philadelphia ALS Association that we got the approval. Obviously, I could not have fought this battle myself. We would have had trouble paying for this device on our own since it costs more than a semester’s tuition at the University of Delaware, where Kevin goes to college.

The people at the ALS Clinic are so good at anticipating my needs, so together we can try to keep one step ahead of things as symptoms develop.

The bottom line is that, absent a cure, the best I can hope for is to manage my symptoms as they develop. I have not participated in any clinical studies yet, but I probably will when I find one that interests me.

Since there is no cure or effective treatment for ALS, I have decided to explore some alternatives. I am going to a homeopath and, because of that, I am probably healthier than I have ever been, except, of course, for the fact that I have ALS. I always have been very healthy, though, and that is partly why this diagnosis came as such a shock.

But the more I hear about people with ALS, it seems to me that most were also very healthy before being diagnosed. Right now, I can still walk, run, hug my husband and kids, and drive. I am fully independent with the exception of my speech limitations.

So at this point, I just can’t talk and I have to be careful about what foods I eat. I choke on foods like crackers and toast and chips and I can’t manage chewy foods. No more Twizzlers. No more salads, nuts, nachos, or cereal. So I am pretty limited now on the foods I can eat.

I have to drink liquids very slowly or I tend to choke on them. Basically I tend to choke on almost anything, no matter how careful I am. Eating a very small meal takes me about 45 minutes. They have told me to keep an open mind about using a feeding tube since I will likely need to resort to that as eating becomes more difficult. I hate to think about that day since I truly love eating.

I have always been extremely independent. I hate asking people for favors. It is hard to think that I will likely become totally dependent on others as the disease progresses. In the meantime, I live one day at a time, truly believing that every day is a gift.

I try to think positive. So I have prepared a list of the difficulties that I encounter everyday and have tried to find something good about each of these things. Here goes:

NEGATIVE. Most obvious thing of course is that my speech is almost unintelligible anymore.

POSITIVE. I am grateful for e mail and my assistive communication device to help me communicate.

NEGATIVE. I can’t speak in my own voice at speaking engagements such as this.

POSITIVE.   I always hated public speaking anyway.

NEGATIVE. I can’t talk on the phone.

POSITIVE. I never really liked talking on the phone and now I never have to again.

NEGATIVE. I hate losing my independence and hate having to ask people to do things for me now.

POSITIVE.   I can now get people to do things for me at work that I never liked doing myself like making phone calls.

NEGATIVE. The lives of my children and my husband have been totally changed because of my illness.

POSITIVE. Hopefully, we have better priorities now. We have a better understanding of what is important in life – family, friends, supporting each other every day, and enjoying every new day that we are blessed with.

NEGATIVE. I can’t eat many of the things I love.

POSITIVE. I have lost weight and now for the first time in my life, I am being told not to lose weight! I NEVER thought I would be told that! I can eat ice cream, pudding, and milkshakes every day now – and I do.

NEGATIVE. I loved telling jokes and stories to anyone who would listen and I can’t anymore.

POSITIVE. My husband doesn’t have to listen to me tell the same old jokes and stories to anyone who would listen.

NEGATIVE. I can’t easily tell my husband, kids, and friends how I feel about things now.

POSITIVE. I can’t very easily nag or lecture my husband and kids anymore.

NEGATIVE. There is no cure for ALS.

POSITIVE. I have no decisions to make about a course of treatment as there is with cancer where the treatments may be worse than the illness itself and where the treatments often fail anyway.

NEGATIVE. I worry about if and when it will spread to my limbs.

POSITIVE. I appreciate that it hasn’t spread to my limbs yet so I try to enjoy every day that I am still mobile.

NEGATIVE. I have to ask my kids to do stuff I used to do for them and myself such as scheduling doctor and dental appointments along with other phone calls.

POSITIVE. My kids are learning to be independent and do things for themselves.

NEGATIVE. It is difficult to do my job. I can’t meet with clients or talk to them on the phone. I can only interact with staff by e-mail or writing notes to them. It gets very tedious and lonely.

POSITIVE. I will go off on disablility soon and enjoy everyday without the pressure of work after working for 28 years as a paralegal.

NEGATIVE. I miss yelling and cheering during my kids sporting events.

POSITIVE. My kids no longer have to listen to me yell during their sporting events.

NEGATIVE. I have to write notes to ask for things in stores – to pick up dry cleaning, prescriptions, photos, and the like.

POSITIVE. I have learned how nice and helpful people can be. I get a chuckle when people write me back notes, assuming I cannot hear, either.

NEGATIVE. I get tired easily.

POSITIVE. I can take a nap everyday without feeling like I am being lazy.

NEGATIVE. I can feel isolated since it is so hard to communicate. It can be awkward being with just one person when driving in the car or out for lunch because I can’t just chat with them, and believe me, I was quite a talker. There were never any awkward silences when I was around. I always had something to say.

POSITIVE. I am a good listener now because I can’t interrupt.

NEGATIVE. I think about the things I would like to do in my life and will probably not get a chance to do.

POSITIVE. I have begun doing some things that I would never have treated myself to before. I get manicures. I go tanning. I even got my first pedicure!   We took a family vacation to Aruba at Easter and I doubt we would have splurged on that before this happened.

NEGATIVE. I get depressed sometimes thinking about how my speech has deteriorated and what the future holds.

POSITIVE. The progression of my symptoms is very gradual so nothing is too shocking. You just kind of learn to live with it day by day.

The most positive thing to come of this is the unbelievable support of so many people – family, friends, co-workers and all the great people at the ALS Clinic and Greater Philadelphia ALS Association. This support has been truly amazing and has helped me so much. I know that whatever the future holds, my family and I are not in this alone. There are so many people who love us and will take care of us, no matter what.

My family and I want to take this opportunity to thank all of you here who have contributed to the Curt’s Pitch program. Through your generosity, this wonderful program has greatly benefited research efforts and patient services at the ALS Association for those suffering from Lou Gehrig’s disease. I am hopeful that with the generous financial backing of so many organizations, and individuals like Curt Shilling and his wife, Shonda, there will soon be a breakthrough in the research, and a cure will be found soon for this cruel disease. Hey, the Boston Red Sox won the World Series, right? So anything is possible. I just hope it doesn’t take 86 years.

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Official small print disclaimer: This is, after all, a personal web site. Any opinions or comments I express here are my own, and don't necessarily reflect the official position of my work as a government attorney or any of my clients.

That fact may become obvious later on, but it needs to be said here anyway.