Speech

Speech

Hi, my name is Joe Harris. God gave us humor so we could laugh at ourselves, and not take ourselves too seriously, so I thought, I would start with a joke.

RUMOR HAS THIS INFORMATION MIGHT BE OF INTEREST TO YOU GENTLEMEN.
They finally released the ingredients in Viagra:

3% Vitamin E.
2% Aspirin.
2% Ibuprofen.
1% Vitamin C.
5% Spray Starch.
And 87% Fix-A-Flat.

I thought I would start with some personal history. I am 33 years old and first experienced symptoms of ALS in the fall of 1997. I am married and have a beautiful 3 year old daughter that provides me with an enormous amount of happiness. I worked as a physical therapist up until May of 2001. Currently I am on medical disability, wheelchair bound, dependent on others for personal hygiene, dressing, eating, toileting, writing, etc. I have very little strength in my upper and lower extremities. My breathing, speech, and swallowing are affected. In March 2004 I underwent surgery for a tracheostomy and now I use a ventilator.

Despite my physical limitations, I have experienced a tremendous amount of hope in my future. That hope stems from current research efforts, family and friend support, and the availability of modern technology. In todays world there is more of an opportunity for dependent persons to live productive and satisfying lives. I am not naive enough to think that my future will be all positive. I know that I will be faced with many difficult decisions and psychological as well as physical hardships. In order for me to find my way around lifes roadblocks and open up my world to opportunities, I know I will have to rely on supportive family and friends, religion, spend time with my beautiful daughter, participate in recreation, utilize the computer and internet, challenge myself intellectually on a daily basis, and maintain hope.

Along with hope my personal well being depends heavily upon council from friends and family. Another aspect of mental health is being able to transform ones identity. Throughout my disease process I have undergone a transformation from a physically oriented individual, to more cerebrally focused. I have mourned every physical loss by going through the stages of grief. In a way I had to reinvent myself. This process of transformation and reinvention continues to be difficult, but with help, I have little doubt that I will be secure with my new identity. And in some ways I have already made that transformation. I attribute much of my successful transformation and mental wellbeing to participating in ALS advocacy, creating and maintaining an informative ALS website, setting future goals and support from friends, family, and the community.

In 2002 an internship was set up through Albertsons College by my sister and her friend Jacqui. During that internship I made a friend for life, Dave Kugler, a student from Albertsons College. The internship was set up to assist me in the creation of an informative website on many facets of ALS. Dave taught me how to create a website. But, more than assisting me in creating a web page, I was also given a chance to do something productive. During this process my self esteem improved, I set future goals, and I challenged myself intellectually daily. I have also learned a great deal about ALS and associated issues. And for me, knowledge equated to hope, which led me to the realization that I could have a future. In addition, my work on the Web site has provided me an opportunity to help others again. By utilizing the Internet, I have been able to investigate many different aspects of the disease, which has assisted me in many activities of my daily life. The Web site addresses financial issues, gives ways to access and explore available assistive technology, and provides information on advocacy efforts, physical therapy, speech and swallowing. I am optimistic that sharing my experiences and knowledge with others who have the disease will help lessen physical and psychological burdens for everyone involved.

And right now I feel that one of the most pressing issues for a PALS , short for person or persons with ALS, is quality of life. If we can improve the quality of life of a PALS they may want to prolong their lives via artificial ventilation or inspire others to advocate for a PALS long after they are gone. With more people advocating for ALS issues, hopefully better ALS treatments will be discovered and a PALS will live longer. Unfortunately, because “the lifespan of a PALS is so short, only about 30,000 are alive at any given time and is considered a rare or orphan disease.” Naturally, ALS would be less rare if those suffering from it lived longer. “Although ALS was identified as a unique disorder in 1869, there is still no effective treatment, and medical science still cannot identify the cause of the disease in more than 90% of the cases.” “Finding a treatment can be difficult because the disease, with a small community of patients, does not have the clout and money-making potential to prompt pharmaceutical research.” So we need to find ways to encourage survival by advocating for research and improving quality of life issues.

I believe that in order to improve quality of life we must do the following. Everyone must understand the hardships of a PALS and their caregivers. The medical community must change their perception that ALS is always a terminal disease, to one more open to the possibility that ALS can also be treated as a disability, in which long term survival is an option. We must instill hope in a PALS and there loved ones, by helping them understand that a PALS can live productive lives. Finally, caregiver support is critical. Because spouses, and or immediate family members, are responsible for the majority of a PALS care, burnout is a very real possibility.

1. Everyone must understand the hardships of a PALS and their caregivers. By understanding the tremendous amount of loss a PALS experiences, will go a long way towards positive and effective interactions between health personnel, caregivers and a PALS. Personally I have experienced tremendous loss since my diagnosis. Loss of my independence, loss of my job and career, loss of physical abilities such as walking, eating, speaking, and Loss of activities such as hunting, fishing, and recreational sports. In addition, I have been forced to modify future goals, aspirations, and dreams. So it’s understandable that I may experience anger and frustration from time to time. And in fact, many pals do indeed experience those emotions. Some more examples of loss can be gleaned from the following passages.

Cheryl Mathews-Prock writes.
“Before ALS, I was working fulltime and leading a very active life. Through dancing, rowing, and step aerobics, I was physically active and physically fit. Suddenly, in May of 1997, I developed a limp and began having problems with my balance and my speech. In January 1998 I was diagnosed with ALS, also known as MND or Lou Gehrigs Disease.” “Having ALS is by far the greatest challenge I have ever faced. Actually as I am writing this I am thinking that describing ALS as a challenge is like calling a hurricane, a little rain shower. I just begin adjusting to losing one function and start losing another. I have broken my toe and my leg falling down just trying to make simple movements; I drop things; I sound like a drunk when I speak; I have difficulty swallowing and occasionally have very scary choking attacks. The simplest things like bathing, combing my hair, applying makeup, and putting on a pair of shoes all have become monumental tasks. It is very tiring for me to talk and no one can understand me when I do talk, so now I type what I want to say into a laptop computer. So far it works well.”

Douglas Edwin Eshleman writes.
“Walking is getting more difficult and now running is impossible. Just think, only three months ago I was planning on running the Columbus Marathon this November!
I am now noticing slight difficulties in writing and talking. I am dropping objects more. Walking is becoming very unsteady. I fell down throwing the ball to the dog.
This is my last day of work. How many times have I dreamed about the chance to leave, and not have to do that dreadful work anymore? I always anticipated this as a day of great joy and celebration. Yet, today was neither joyous nor celebratory.”

Imagine if u! experienced the before mentioned loss, how would you act. In fact, By understanding and recognizing the tremendous amount of loss a PALS experiences those responsible for the care of a PALS will be more effective.

In addition, by understanding the possible stages most pals go through, will also lead to more effective and improved care by caregivers and health care personnel. It has been my experience that a PALS may go through 3 primary stages.

1. denial of prognosis. Here pals are easily taken advantage of and become susceptible to treatments that promise cures that have no scientific proof of there claims. Claims of miracle Cures are numerous, and can be both physically and psychologically taxing.
2. pals experience anger and frustration that this is occurring to them. Here pals may lash out at others, become depressed, or withdraw completely from others.
3. Living with ALS. Here pals accept their fate. They decide whether prolonging their life via artificial ventilation, or accepting death, is in the best interest of their family. Deciding to pursue artificial ventilation was by far the toughest decision I have ever made. Unfortunately, many decide not to pursue ventilation, because they do not understand that ventilation is a viable option. In addition, many feel personal and financial issues dictate their decision of not to go on a ventilator.

My own experience with a tracheostomy was tough at first. It took me awhile to get use to the tracheostomy. I had to deal with air in my stomach and sinus problems as well as the surgery. The sinus and air problems have gotten much better. And after some adjustments of vent settings and going to a larger tracheostomy tube, I have finally adjusted to the change. I am sleeping better than before the surgery and I no longer wake up with a headache. The major change in lifestyle, is that I no longer can be left alone. But other than that I am doing better every day. My family is wonderfully supportive and I know I have made the right choice every time my daughter loves on me and tells me she loves me

By learning and understanding what a PALS are faced with everyone involved with their care will be able to help them cope.

Douglas Edwin Eshleman sums it up best with his
12-Step program for coping with ALS:

Have a supportive spouse, family, and friends.
Make time to hope.
Make time to grieve.
Become a knowledgeable, informed PALS.
Get affairs in order.
Get proper medical treatment.
Make early use of adaptive equipment.
Say goodbye to the old life.
Accept the changes in the new life.
Choose happiness and enjoyment.
Choose comfortable surroundings.
Feel good and keep busy by helping others.

The second point I would like to discuss is the subject of ALS viewed as a disability rather than a death sentence.

This subject was written about by Cheryl Carter New, a person with ALS. She wrote an article which appeared in the ALS newsletter published by the MDA. In that article she wrote. "What I want to know is why ALS is not treated like any other disability." She also wrote. "Comparable diseases such as Parkinsons, multiple sclerosis and various muscular dystrophies are seen by many doctors as disabling conditions, not inevitably fatal diseases. If you have one of these diseases, its assumed that health care professionals will help you to "overcome" the symptoms and get on with your life." And then she writes. "Lets see, I do not lose my sight, hearing, sense of feeling or the ability to taste. I can still see the beauty of nature, hear the music of the wind in the trees, feel the rain on my cheeks, and experience the love of my husband and family. I can watch the boats go by on my little lake and see Big Bird (our great blue heron) as he walks in his dignified way along the shore. With technology, I can continue to write and correspond with my family and friends. I can even talk. And there is new technology every day. With a power chair, even if I have to go on a track I can be mobile and can travel. I may not be able to move, but I can experience the world."

I agree with her and hope that eventually the emphasis will be on living and not dying. It is false to assume your life is over because you have been diagnosed with ALS. I have participated in many recreational activities since my diagnosis. I have been fishing for steelhead in Northern Idaho and for Salmon in Alaska. I have been on many outdoor outings and traveled to the east coast twice. I have attended professional baseball, football, hockey, and basketball games. In fact just a few weeks ago I traveled to Seattle to watch the mariners take on the Yankees. My wife and I have been to Hawaii, Western Caribbean, and Vegas for vacation. At home I enjoy sports on television, playing with my daughter and exploring the internet.

The third point, is that we must instill hope in pals and there loved ones, by helping them understand that a PALS can live a productive life. I firmly believe all pals, when given the opportunity, can live productive and meaningful lives. I am living proof that it can be done. In fact, there are many examples of pals living fulfilling lives.

Specific examples include Wayne, a PALS, who is ventilator dependent and works fulltime for RJ cooper. He surfs the Net, asking related sites to link to RJ coopers website for about 5 years now.

Bert Woodard is another pals, who has chosen to continue living. Despite a poor prognosis from physicians, Bert Woodard has lived with ALS for over 21 years. Instead of dwelling on dying, Bert has made a point of living. He has written a manual, "Living" With It, Not Dying Of It, for others with ALS or other crippling, life-threatening diseases.

Project ALS, an organization aggressively pursuing a cure for ALS, was inspired by JENIFER ESTESS. Even though Jennifer chose not to pursue invasive ventilation, her legacy lives on long after her passing.

David Jayne, an advocate for Medicare reform, and a longtime PALS, has been successful in initiating changes in medicares homebound rules. Currently he continues to advocate aggressively for more changes even though he is ventilator dependent.

Locally, Wes Evans is in the process of creating and planning a major MDA fundraiser. A motorcycle ride for ALS. If you would like to participate or just learn more about it talk to Regina.

Jack orchard, A long time PALS, created a nonprofit organization called extra hands for ALS, which is dedicated to lessening the enormous burden of caregivers.

Leonard Cauttero inspired the creation of a nonprofit organization called Ride for life, which is dedicated to finding a cure by raising awareness and through fundraisers.

Robert Packard led his family, friends and colleagues to create the Robert Packard Foundation, raising more than $4 million which ultimately led to the Robert Packard Center for ALS Research at John Hopkins.

There are endless examples of pals living their lives to the fullest. We are reminded every day that Ordinary people do extraordinary things when motivated by love. Whether its love of country, love of friend, love of relative or love of life. So join me and help pals choose to live.

Finally, caregiver support is critical. “An estimated 26,000,000 individuals in the United States each year, care for 1 or more adult family members or friends who are chronically ill, disabled, or terminally ill.” Because spouses and immediate family are responsible for the majority of a PALS care, burnout is a very real possibility. It is important for health care professionals to breach the subject of care giving with their patients. Therefore educate yourself on care giving issues and know the resources available for caregivers of pals.

I would like to read to you a passage written by my wife, one of the wisest people I know who often wears many different hats in our family. She plays the roll of bread winner, mother, wife, plumber, fix-it person, and all around family confidant.

“Providing care to a loved one who is ill can be a physical and emotional roller coaster. You may experience a multitude of feelings, just as your loved one experiences.
Care giving is the framework for all other care. And it is important that the caregiver and loved one are both balancing their new roles and lifestyle.”

She also gives some insight into coping, by listing thoughts for the caregiver to keep in mind, as one prepares for care giving.

“Take time out for yourself. Coordinate with your loved one and schedule time for yourself. In order to have some time for yourself and for others, you must ask and accept help that is offered. This is not an easy thing to do, but it is essential. Remember YOUR health is important too. You will not be able to continue to be a primary caregiver to your loved one if you become ill or injured.”

“You, your loved one, family members, and friends are all experiencing some degree of LOSS. And with loss there is grief. It is all right for each person to experience the grieving process, which may include denial, anger, fear/frustration, and acceptance. Do not hesitate to seek guidance or help from outside sources at any time.”

Some of those sources include.
Family and friends.
church community.
pals email/chat rooms.
Counseling services.
EAP or employee assistance programs, usually offer a few professional counseling sessions at no cost to you.
local In-home Care such as agencies which provide respite care. A person will come to your home and provide company to a PALS.
local nursing facilities which offer day programs to the PALS which
allows the caregiver to attend appointments, run errands, lunch, etc.
and Private hire for home care services

And finally she writes

“Be informed. Educate yourself on the disease, the progression of the disease, and what lies ahead of you and the PALS. Plan for the future and live in the present.”

The last thing she writes is extremely important. Planning for future needs will ultimately lessen caregiver burden and allow for avoidance of catastrophic events. Filling out a power of attorney, living will, or a do not resuscitate order, if one is desired, are important to do early on in the disease process. Explain to the PALS that its important to let their family and physician know their wishes pertaining to advanced medical directives.

Explain to them that if they are struggling with eating get a feeding tube. I found out the hard way that a feeding tube was liberating. I had a feeding tube placed following a bout of pneumonia and a week stay in the hospital. Following the placement I was able to eat for pleasure and at the same time get adequate nutrition from my tube feedings.

Finally, they need to consult with their physician, PT, OT, and speech therapist on equipment before the need appears. That way they will be prepared when the need arises. The importance of being prepared becomes even more important when you consider the length of time it takes for the insurance process. Also when considering a speech device they will need to predict their end stage speech function, with the help of their speech therapist, because Medicare will only reimburse them for 1 speech system in their lifetime.

In addition to planning, familiarize yourself with the resources made available to pals and their families. My family and I are starting a southwestern Idaho branch of a nonprofit organization called Extra Hands for ALS. “Extra Hands for ALS exists to assist people with ALS and their families, raise public awareness of the disease, energize the ALS community, and introduce young adults to community service." "Through Extra Hands for ALS, high school and college students volunteer to help people with ALS and their families by doing chores and errands or just providing company for the homebound. Students also organize and participate in ALS public awareness events designed to teach their peers and communities about the disease."

A second organization to familiarize yourself with, is the MDA. The MDA is a fantastic organization that offers support in the form of ALS clinics, support groups, financial assistance for purchases of wheelchairs and communication devices, as well as loan closets for equipment.

The UCP or united cerebral palsy organization provides insight into the technology available to pals.

Linc, or Living Independence network corporation can assist in finding financial support.

In conclusion, by learning and understanding what a PALS is faced with, by familiarizing yourself with support resources available, and by understanding that all pals can live productive meaningful lives will enable you to improve the quality of life of your ALS patient.