MY STORY COPING WITH ALS by Janice Moulton
I was traveling through my journey of life at the age of 46, and one day I was shocked beyond belief of what my future would bring. I had been noticing some weakness in my right foot after walking a short distance, some twitching in my legs and arms and also noticed some difficulty turning keys in locks. I knew something was wrong and my family doctor listened to my symptoms with concern. He sent me to a few specialists who examined me and ordered tests but nothing seemed to surface. I still couldn’t accept that all was OK. As time went on, the symptoms were occurring more frequently and with greater intensity. My doctor then sent me to a neurologist to attempt to find some answers. The neurologist conducted a physical exam and asked several questions then decided to order a MRI. I would have to wait 9 months for a MRI followed by an EMG. It wasn’t until January 11, 1996 that I was diagnosed with “ALS” (amyotrophic lateral sclerosis); also know as Lou Gehrig’s disease) over 2 years after my first symptoms appeared. A month later I went for a second opinion and the ALS was confirmed. There is no specific test to diagnose ALS. It is a long slow process of eliminating other diseases which is frustrating and sometimes fatal because the disease can progress at such a fast pace that death can occur within a few months.
I was in shock and denial for many months subsequent to my diagnosis. I felt so scared thinking there was nothing we could do and nowhere to turn. My extraordinary loving husband Ken of 25 years took the initiative to inform himself on what we faced with this new challenge in our lives. Ken contacted the nearest ALS support group located in Hamilton and received booklets on ALS and an invitation to come to their monthly support group. I was reluctant to go to the first meeting but was happy that I did. We met so many remarkable and caring people who understood the disease and continue to provide ongoing support to us to this day. We also met many PALS (people with ALS) and CALS (caregivers of ALS patients) who have inspired us to keep enjoying what we can in life and continue to hope for a cure. We started family counseling which helped to get our feelings and anxiety out in the open and I also started writing a daily journal which served as a therapy for me. My goal, God willing, is to complete and publish a book on my personal experiences living with ALS to educate those to follow who are forced to face this devastating disease. I soon came to the realization that I better start enjoying my life as best I could and learn to live with ALS instead of dying from ALS.
I made arrangements to start physiotherapy at the hospital and get in touch with our local Community Care Access Centre to receive help in my home when I needed it as the disease progressed. I was amazed at how many people, including health care professionals, knew very little about ALS. I took it upon myself to start to educate others. I decided this insidious disease was not going get the best of me without a fight. Giving up was not an option. I believe a positive attitude has a direct effect on how you cope with illness and how you fight the everyday challenges that confront you. ALS is a disease that takes away abilities to perform everyday functions we take for granted. I fight very hard to not allow ALS to take my spirit away.
I have met some wonderful, dedicated health professionals who have worked with me over the past 7 years and we have learned from each other how to manage the changes with my body dealing with ALS. It is a very humbling experience to ask for help and to have strangers come into your house to give you help when you would rather keep your independence and do it yourself. The case managers at CCAC (COMMUNITY CARE ACCESS CENTRE) for home health care have been great coordinating my physio therapist, Sue who introduced exercises and therapy to help keep movement in parts of my body when they become stiff and sluggish and no longer wish to work on their own, my occupational therapist Nancy and a variety of personal support workers and I have been very fortunate to receive wonderful care and understanding from all these dedicated professionals. Unfortunately my case manager and personal support workers have been changed numerous times due to health contracts so that makes it more of a challenge when I have to get acquainted to strangers everytime this happens. I heard of a new program called Direct Funding Program- Self Managed Attendant Services and filled out an application and was put on a waiting list. I went for an interview and put on another waiting list then finally approved. This new program enables me to hire my own personal support workers to help me in the house, more hours to give Ken a break and I have more control of who comes in to our home to help us.
My wonderful OT, Nancy has been with me since April 1996 and was first to introduce me to useful tricks to make things easier or to conserve my energy and eventually equipment as needed. She has been very patient with me because I would rebel when each new piece equipment became part of my life because I felt it was a sign the disease was taking over my body but after using them I found they did help to make my struggles easier to cope. Nancy would let me try equipment as a loan from CCAC then she would contact my ALS support group to see if they had equipment in their inventory to send out to me. The ALS Society and support group has been a life saver with their loan of equipment as well as other support to help lighten our burden. My first piece of equipment was a cane to give me support when my walking became uneven, then I received a lift chair, then we installed a stair glide chair so I could get up the stairs to our bedroom, a manual wheel chair when walking a long distance outside the home became unsafe, a raised toilet seat, a walker to give me more balance when walking in the house became more of a struggle, we built a ramp when it was no longer safe to use stairs to get into the house, we remodel our downstairs bathroom for a roll in shower, a hospital bed when I could no longer get up from regular lower bed or turn in bed with out grabbing side rails to pull myself, I also found satin sheets makes it easier to slide my body, and then I received my power wheelchair which gives me more independence inside and outside the house. The equipment we needed would be a financial burden if we didn’t have the direction from my OT and the support from the ALS SOCIETY who loan out the equipment to PALS as the disease progresses. My computer is a great tool as the ALS creeps into my hands, arms, and voice so I am lucky to have this technology.
Ken and I have been blessed with 2 supportive loving sons, Chris and Jeff and all my 3 guys have learned to take care of me with much love and understanding as our lives change throughout the years. I thought my enjoyment of life was over when I was diagnosed in 1996 but I have enjoyed so much more because I now take more time to appreciate what is really important. I am very grateful for each day to enjoy the little things in life, a smile, a laugh, a conversation, a phone call, an email, good food, the sunshine and all that Mother Nature has to give everybody if they would take the time to appreciate it. I have been fortunate to enjoy watching our sons grow and to attend the celebration of Jeff and Elisha’s wedding and now our grandson, Cole who gives smiles and laughter and takes my mind off my troubles. The love and support from family, friends, and health care workers help me to keep fighting everyday with a hope of a cure. I also have enjoyed my computer, communicating on the internet with emails, meeting others with ALS and how we can help each other, keep up to date with medical news, and sharing a laugh or special thoughts.
Public awareness and fundraising for ALS has grown over the past 10 years with books, movies, community projects and the money raised helps to supply PALS with equipment, support and research with hope for a cure.
We have been involved raising public awareness and fundraising for ALS with the Hamilton support group and in our own city Brantford. We have participated in 5 ALS WALKS held in Hamilton, which started with 50 walkers and last year had 450 walkers, we have had 2 interviews for the health page in our city newspaper, we were interviewed by STAR TV with Wendy Crewson (who won the Humanitarian Gemini Award for spokesperson for ALS) and she also stared in an ALS MOVIE, and we will be having our 3rd ALS BENEFIT DANCE this October in Brantford. I am especially proud and honoured that our special friends Ray and Linda had an idea 3 years ago for an ALS fundraiser and so many of our wonderful friends have taken the time and worked so hard to support ALS in our city with a very successful day of selling tickets, getting donations, preparing food and local musicians volunteering their talents entertaining for the whole day.
I have learned so much about myself and life in these past 7 years and also learned it’s not what difficulties life brings you but how you react. We can all make a difference in anyone’s life if we take the time.
I am always willing to answer questions or communicate with others about ALS or just be a good listener. Some family and friends have chosen to keep their distance since my diagnosis because they don’t know how to cope but I have met many new wonderful friends on the computer who have given me hours of pleasure through my difficult days and hopefully I have given others some pleasure too. I also enjoy music, reading and writing about my experience to educate others. I enjoy my days when I can still laugh at my husbands jokes and watch our grandson Cole who is 1 year old discover all of life’s pleasures with unconditional love giving me so much joy with his smiles and antics.
ALS may have control over my body but I will try to keep my spirit uplifting.
Unfortunately we lost our Friend Janice in 2007, I miss her daily jokes and friendship
"Enjoyment is not a goal, it is a feeling that accompanies important ongoing activity." Paul Goodman
© ALS Independence 2003-12
© ALS Independence 2003-12