Judy Repass's Home Page
Me and my husband, Charlie
Welcome!
My name is Judy Repass, and I'm a PALS, person with ALS. I'm a long-term survivor, diagnosed in 1975. I'm a ventilator-dependent quadriplegic, and I live a very full and active life. I'm also a home decorator, gardener, avid cd collector, and ALS advocate. Here's my story.
The first signs of something wrong started in January 1975. I had a strange weak feeling in the first two fingers of my left hand. It was most evident when I tried to hold a cigarette and when I played the piano; I kept missing the keys. This was very frustrating, especially when I found I couldn’t type. I was a secretary at the Department of the Interior in Washington, D.C. and I typed over 90 words per minute. Now, everything I did with my left hand took extra effort.
I didn’t do anything about this for several months. By that time my right hand had developed weakness, and I was having a lot of difficulty doing my work. I went to the nurse in the infirmary in the building where I worked to ask her opinion on which kind of doctor I should see. She suggested a neurosurgeon. Since the George Washington University hospital was close to my office, I found a doctor in their medical building adjacent to the hospital. I made an appointment with Dr. Smith, a neurosurgeon. He gave me a neurological examination, and his first thought was the possibility of a brain tumor. He admitted me to the hospital for tests. That was in June, five months after my symptoms began.
I underwent a myelogram that proved inconclusive. I then had an arteriogram that also showed nothing definite, so I had an EMG to look for other possible problems with my nervous system. Dr. Smith then reached a preliminary diagnosis of ALS, but to be sure, he arranged to have me admitted to the National Institutes of Health, where the diagnosis was confirmed by a muscle biopsy in early October. When I returned to Dr. Smith’s office, he wouldn’t speak directly to me about my prognosis and what I could expect for the future. He spoke to my husband, Charlie, and let him tell me that I would probably die in two years. I was 27 years old when my symptoms began, and we had been married nearly eight years.
I returned to work and tried to resume my job. I had to delegate some of my duties to a clerk because it was becoming increasingly more difficult to handle papers, and typing was impossible. Then, I started falling. I fell into the elevator on the way to my office. I couldn’t move as the elevator went to the top floor. I was afraid the elevator would stop before I could get up. It was very embarrassing to be so helpless. I was on my feet when the elevator reached the top floor, but very shaken. I had temporarily dislocated my knee and, after it went back into place, I had trouble walking. I had to ask a maintenance man to help me to my desk. The next day, I was returning to the building from lunch and was climbing an outdoor staircase, when I dropped to one knee. It felt as though I was frozen. I couldn’t move at all. I began to panic and was wondering how I was going to get out of this situation when I felt an arm reach under mine and lift me to my feet. It was a man from my office, and he helped me to walk back into the building. After I sat down at my desk,I began to think about all of the things that I could no longer do to perform my job, and I became very depressed. My despair was overwhelming, and I left work that afternoon knowing I wasn’t coming back.
I wrote that account of my first year of having ALS a long time ago. I have been through a lot since then. With the rapid progression of my symptoms I was determined to fight for my life. After a serious fall at home while Charlie was at work, I had to stay with either my Mom or my sister, Sandy. My Dad and my brother, Rusty, also helped out. We read about a clinic in Florida treating ALS victims. I was willing to try anything in hope of a cure. The cost for the six week program was $1500. I went there with my mother in November 1976 for treatment with detoxified snake venom, and continued with the injections for almost two years. I can’t say I saw any benefits from the injections. I started seeing a neurologist who put me on baclofen for muscle spasms and elavil for excess saliva. By 1977 my speech was beginning to slur. I also started using a wheelchair full time, able only to pivot into the chair. I had footdrop, and my toes curled inward. It became more difficult for my family to care for me because it was getting harder to move me from the wheelchair to the bathroom. In 1978 Charlie found that our health insurance covered licensed private duty nursing care. We hired a LPN (licensed practical nurse). Her name was Beth, and she became a very good friend.
At the end of May 1979, I developed pneumonia from a sinus infection. I was admitted to ICU after being rushed to the hospital by ambulance. I had nebulizer treatments and painful nasal suctioning. I was not prepared for this phase of the disease. I had even stopped going to my neurologist. I suffered a respiratory arrest in the ICU, and awoke with an intubation tube in my throat and on a ventilator. I was unable to speak, and the tube hurt my lips. I had a nasal tube for feeding and medications. The doctor asked me if I would consider a tracheostomy. Charlie and I had never talked about this before, never realizing this day would come. The trach was a welcome relief after being intubated, although I was very upset about losing my speech.
I was weaned off the ventilator and the nasal tube was removed. I had difficulty eating at first. I had lost so much weight, down to 108 pounds on my 6 foot frame. There was mention of a feeding tube, which made me try harder to chew and swallow my food. I slowly recovered, but I had completely lost the use of my body from the shoulders down.
In mid-August my doctor said I could be released from the hospital provided that we arrange for 24-hour nursing care at home. I came home to a new lifestyle that would forever change the way I lived. Charlie had arranged for a hospital bed, Hoyer lift, suction machine, everything for home care. We started with agency nurses in addition to Beth. We were disappointed with agencies because the nurses would be trained and never show up again. This was especially hard on me because training nurses was exhausting, and because I communicate with lip reading, I needed the same nurses on a regular basis. We finally got a group of dedicated RNs and LPNs by putting ads in the local paper. Beth moved away in 1982, but I still have one of my first nurses, Becky, who has been with me since 1980. She is my hands and my feet, and I think of her as a sister.
I spent so many years struggling to put weight on. Eating was exhausting because I kept choking, requiring suctioning three or four times during the meal. I aspirated food in my trachea, and some food went into my lungs. I was hospitalized with pneumonia more times than I can remember. I almost gave up one time I was in the hospital with a severe case of pneumonia. I was just too tired to fight anymore. Charlie brought a beautiful oil painting of a cat to my bedside that looked like my cat at home. That loving gesture by him gave me the inspiration to fight to live. He wasn’t ready for me to give up, and I love him for making me change my mind.
In April 1988, I agreed to go on the ventilator, almost nine years after my tracheostomy. How I wish I’d done it years before. The vent increased my strength. My eating improved so much I gained too much weight and had to lose some. The amount of times I had to be suctioned decreased, and had only one minor case of pneumonia until February 1999. I was hospitalized with a blood clot in my lung and was seriously ill for two weeks. I'm taking a blood thinning medication now to prevent it from happening again.
My quality of life has improved so much. After being housebound all those years I am now able to go everywhere in my handicap van. I go shopping, to the movies, and out to eat. I am still able to eat regular food, but I am having trouble with sipping. I got my feeding tube in August 2003, over 24 years after my trach.
In 1994 Charlie’s job was abolished and we were in danger of losing our health insurance as well as our income. At that time he had been with the company for 29 years. He was able to find another job in the company, but in another state, which was hard on both of us. In September 2001 he was laid off again after almost 36 years with the company. This time, however, he was eligible for retirement with full medical benefits. It's so good to have him living at home again.
My nurses help keep things running smoothly around the house. Becky is my gardener nurse, growing flowers, herbs, and vegetables. We've won quite a few ribbons at the county fair. She also does errands for me, ordering vitamins and picking up some of my medical supplies, and food for my three cats. Elaine takes me out shopping and helps me with home decorating. She and Judy are my traveling nurses. Every year in October we take a vacation in Ocean City, Maryland. My other nurses are Laura and Sandra. All of my nurses are excellent caregivers, and I'm very lucky to have them as my friends.
I am able to use a computer by myself with a single switch and E Z Keys for Windows by Words +, Inc. It has an on-screen keyboard and mouse, and is available with a voice synthesizer.
Words +, Inc. E Z Keys software can be downloaded there
Since I've had E Z Keys, I have made many friends with PALS on AOL and the internet. How I wish I'd had the internet when I was first diagnosed.
I am proud to have my picture on the ALS March of Faces Banner, and am proud to have served on the Board of Directors as a Trustee, Second Vice President, and now, have been elected to serve as President. The Banner is a powerful visual statement of hope for a cure for this disease that robs us of our bodies but not our minds. I urge all PALS to go to the ALS March of Faces website and have your picture submitted to be on the Banner. I've marched to Capitol Hill with the Banner along with other PALS in wheelchairs or on scooters several times. In June 2004, I joined the Race Across America from Georgetown PA to Atlantic City NJ. The race started in San Diego and took five days and seven hours to complete. The bicycle team ALS Lightning came in first on the Boardwalk, and it was the most exciting ALS advocacy event I've been involved with. I will continue to promote awareness and advocacy for as long as I can.
ALS March of faces home page
I understand that not everyone will make the choice I did to go on the vent. I didn't know I had the option for having a tracheostomy electively instead of having it done in an emergency situation. I just want to say that life on a vent is worthwhile if you make the effort to enjoy life to the fullest. I know that I do. I thank God every day for my life.
The following verse has been an inspiration to me since before I was diagnosed. I regret I do not know the origin.
Yesterday is already a dream,
and tomorrow is only a vision.
But today, well lived,
makes every yesterday
a dream of happiness,
and every tomorrow
a vision of hope.
A new awareness website WhatisALS where you can find out how to get a free WhatisALS bumper sticker
Check out George Goodwin's website alsindependence for PALS and CALS
Share your ALS experiences with PatientsLikeMe
Please check out NatureRich for excellent healthy natural products that I use.
Click here for some PALS pictures
Here's Judy's e-mail address. I'd be happy to answer any questions.
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