I’d like to thank the MDA for this award and my friends and family for all their support. I’ve been asked to speak today about myself in hopes to inspire PALS to live productive lives. I’m living proof that it can be done. In fact there are many examples of PALS living fulfilling lives. Some are here today. Others may be neighbors, friends, or family. In order for Pals to live productively there must be adequate support from friends, family, and the community. Attitudes of the medical community towards PALS must change from focusing on death and more on living with ALS. Cheryl Carter New, a person with ALS, 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 isn't treated like any other disability." She also wrote. "Comparable diseases such as Parkinson's, 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, it's assumed that health care professionals will help you to "overcome" the symptoms and get on with your life." And then she writes. "Let's see, I don't 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's 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. On a regular basis I go out to movies, dinner, and shows. 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. So join me and shed the barriers so that living a productive and entertaining life becomes a possibility.
Ok, so a little about myself. I am 31 years old and first experienced symptoms of A L S in the fall of 1997. I am married and have a beautiful two 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, ambulatory with assistance (otherwise 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. 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.
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’ve already made that transformation. I attribute much of my successful transformation and mental wellbeing to 3 things; participation in an internship, ALS advocacy, and support from friends, family, and the community.
1. 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 A L S. Dave taught me how to create a website. But, more than assisting me in creating a web page, I also was 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 A L S 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.
You might be wondering how I was able to create the website, access the internet, and communicate effectively. First, with the help of friends and family I investigated my options. Another form of assistance I got was from the united cerebral palsy. I was able to brainstorm for ideas with the u c p staff and then trialed different assistive technology products. Eventually I purchased a laptop computer, was given Gus speech software, and utilize an infrared tracking product called natural point to access my computer and the internet.
The second thing I attribute to my success is A L S advocacy. When I was diagnosed with A L S a sense of helplessness set in. It took participating in A L S advocacy to take back some control in my life. PALS and friends of PALS have accomplished many things with advocacy. Accomplishments range from procuring funds for research to the passing of favorable legislative bills. If not for A L S advocates PALS would have to wait 2 years to become eligible for Medicare. Locally advocates were important in passing legislation for disabled parents. If u r wondering how to get started, I have a few suggestions and a handout. First you should put together a Contact list for advocacy networking. All you have to do is put together a list of contacts for grass root advocacy efforts. Have friends and family members that don’t mind do the same. Thus you are quickly and effectively able to respond to advocacy efforts. With email as a modern medium for transferring information pertaining to advocacy efforts, that information can travel further and quicker than in the past. It is wise to follow up email with a phone call if time and money allow.
After you have put together your list go and investigate current issues. Those include; Amend the home bound policy: This effort would benefit many. The purpose of the effort is to “amend a Medicare policy that requires beneficiaries with significant illness to remain homebound or lose vital medical home care benefits.”
And there is The Coalition for the Advancement of Medical Research): This organization is “an advocate for the advancement of breakthrough research and technologies in regenerative medicine, including stem cell research and somatic cell nuclear transfer." They lobby congress on behalf of PALS and they need your help.
2 other organizations are the alsa and mda. The ALSA is the ALS association and has an office located in Washington D.C. dedicated to advocacy issues. Currently those issues are quote. “increased federal funding for A L S-specific research; development of a prescription drug benefit for Medicare beneficiaries; and support for programs such as respite care to provide assistance to care givers .”
The MDA established the National Task Force on Public Awareness. “This advisory body is composed of individuals from across the country, who are leaders in their communities and achievers in many professional fields. The group - consisting of adults affected by neuromuscular diseases in M D A's program - serves as volunteer consultants for the Association, particularly on issues of interest to people with disabilities.”
One more issue to familiarize
yourself with is Respite care: The Lifespan Respite Care Act of 2002
(Introduced in Senate) is intended To amend the Public Health Service
Act to establish a program to assist family care givers in accessing
affordable and high-quality respite care, and for other purposes.
If you would like to be added to my contact list come up and give
me your email and I’ll try to keep you abreast of current advocacy
issues.
The last and the most important aspect of my life, that I attribute my success to, is family, friend, and community support. I can’t stress enough how important support from the community, from friends, and from family is. As I always say, my friends and family are my greatest asset in the fight to survive A L S. Three organizations that have given me support are financial council from linc, ucp, and the mda. The mda has loaned me an electric wheelchair, and maybe the most important contribution from the mda is their support group. If you’re a PALS or friend of a PALS then I want to encourage you to attend the support group.
Some last words of advise regarding mental health is never give up, set future goals, hunger for opportunities to laugh, explore the world for ways to keep yourself productive, and seek out supportive friends, family, and strangers.