My beloved husband, Del, was born March 25, 1937. He was always taking care of himself. He didn't smoke or drink, and he watched his diet, exercised and kept his body in good shape. He loved to fish (catch and release) and hunt. He enjoyed playing with his grandchildren; they were his pride and joy. Del also loved to talk. He was a perfectionist at everything he did in life. He was a taxidermist and was known in the U.S. for his fish mounts. Del loved life!

Del and I met on July 3, 1973 and were married July 5, 1974. We were together 80% of the time from the day we met until the day he died.

In August of 1994, Del began to lose his balance and his speech was a little hard to understand. I asked him to repeat himself and he said it was me! Sometimes, I do have a problem hearing. But his speech was becoming slurred. He went to a doctor and was told he had ear wax build-up.

In June of '95 he was becoming worse. Friends teased him about hitting the bottle. They knew he didn't drink. I took him to another doctor and he thought Del had Parkinson's Disease. In September of '95, the doctor put Del on Cogentin as he was drooling. His walking was getting worse so they said to try a cane.

In October, he graduated to a folding walker. He was having problems with the walker, so they put wheels on it. We were advised to go to Social Security and apply for total disability. Del, being self-employed, didn't have insurance. But we heard horror stories of people getting denied. On Oct. 31, 1995, we went to Social Security. They made appointments with a neurologist and psychologist in January of '96. The neurologist said that Del was an a-typical Parkinson's case. He was approved for total disability on February 1, 1996. Del also qualified for Medicaid because of his lack of insurance and the fact that he had been totally disabled for over two and a half years.

Del had a big recliner and everytime he got into it, he would fall asleep. I would ask him what was wrong, and his reply would always be that the recliner was so comfortable. I didn't think much of it. He was becoming kind of short-tempered with the grandkids. One of them has ADD and can be a handful at times.

Being around my husband almost 24/7, I did not see these changes in him. My daughter-in-law pointed it out. Plus I was caring for my mother, who came to live with us after being diagnosed with Alzheimers.

Once Del was on Medicaid, the doctor put him on Sinemet. When he was diagnosed with Parkinson's, I went and got a book on it. According to the symptoms, Del had the oily forehead, increased dry scalp and rigid arms. I had always teased him about walking with his arms rigid. Now I knew why. He never had any tremors though. With Medicaid we had to have a doctor on their list. The doctor treating Del wasn't on it, so we had to find a new doctor. As I went down the list, I came across my mother's doctor. He knew Del before he showed any signs of being ill. /p>

I called him to see if he would take Del on, and he was happy to. He saw Del wasn't responding to the Sinemet and ordered an MRI the first time he saw him. That came back negative for a brain tumor. He tried Elavil along with the Sinemet and Cogentin. In April of '96, Del graduated into a wheelchair.

I was watching my husband become unable to do things that he loved, such as talking and doing things around the house and yard. The doctor ordered physical and speech therapy for Del and added some drugs to his system.

One day I went out in the yard for a few minutes. I came back in and asked if anyone called. He said, no. I checked the caller ID and my son had called. But he didn't leave a message. I called him and asked why he didn't leave a message.

Chris' reply was that he had talked to Dad for almost ten minutes. I asked Del afterwards why he didn't tell me that he had talked to Chris. He didn't remember talking to him. What was happening to my husband? This wasn't Del. Normally he had the memory of an elephant.

Now when he went to the store with me, he would go in the "out" door and out the "in" door. I had to catch him, as the doors opened automatically. He couldn't remember where I parked the car, even though it was within our sight. I had to get a handicapped sticker for our car.

I called the doctor the next day and took Del in. He said that Del was probably in the early stages of Alzheimers. I looked at him and said, "I can't have two of them with it!". I took Del home and got out my book about prescription drugs. I started checking out the drugs he was on. Almost all of them affected the memory (memory loss, memory confusion, etc.) I could see that some of the drugs, such as Cogentin and Elavil weren't helping Del. I called the doctor and asked if I could cut down on some of the meds that weren't helping. He said yes. Del's memory improved 1,000%. He didn't have Alzheimers; it was the meds affecting his mind. We were so relieved.

The doctor sent Del to a neurologist in September of '96, as he seemed to be going down. After some tests, his MD said they were leaning towards PSP. I called the Michigan Parkinson'g Foundation and got a phone number for the Society of Progressive Supranuclear Palsy and asked for some books. When we went to the neurologist, I mentioned to him that I ordered the booklets on PSP.

On November 11, 1996, we went to see the neurologist. He told us that Del in fact did have PSP. I asked him what it was, what we should do and what was going to happen to him. His reply was, "When you get the books, they will answer all your questions. See you in three months." Then he walked out. I didn't receive the books for another six weeks, and our doctor was unfamiliar with PSP. We were in the dark and had nowhere to turn.

When the books finally arrived, we read them eagerly. As difficult a disease as Parkinson's is, we could have lived with it.... but PSP? It was a nightmare.

With PSP, your symptoms progress rapidly; usually it is aspiration pneumonia that eventually kills you. One of the main problems that is characteristic of PSP is the inability to focus your eyes up or down.

In February of '96 when Del got on Medicaid, I took him to the eye doctor, as he needed a new prescription. Medicaid approves glasses every two years. In November of '96, Del complained again about his eyesight. I called the eye doctor and took him in once more. His prescription needed changing. We sent it through Medicaid again along with the books from the Society for PSP and they approved Del. This is rare, as it had only been nine months since the last pair. I was so grateful, as we didn't have the funds to lay out for the glasses.

I talked to the MD about the neurologist's treatment of us when he diagnosed Del. He told us that the neurologist was an excellent doctor. He agreed that it wasn't right what he did, but he advised us to try and give him a chance. We went back and I had questions for him. He received a call on his cell phone and he took the call. When he was finished, I was going to ask the questions; instead, he starting making phone calls. That didn't set very well with either Del or me. I never did get to ask questions. He asked Del if there was any change and then gave the customary "See you in three months."

The MD said that perhaps the neurologist's behavior was due to Del being on Medicaid and that once the Medicare kicks in , we'd see a difference in him. I have to admit that he was always very busy....overly busy. His waiting room was like a production line. If we had a 2:00pm appointment, it was 4:30 before he saw us.

In'97 Del was having problems with his swallowing. His gagging caused him to wind up in the hospital a couple of times.

Del had a throat infection in December of '97. He was given E-Myicin, an antibotic, which he stayed on until January of '98. Since he was getting unable to climb stairs to get to bed, I bought a sofa bed for the living room. Mom had the downstairs bedroom. Del's balance and falling were getting worse. I had to stay with him, and thankfully he was cooperative with me in helping him get up. I had taken to the recliner for my bed, so I'd be close to Del and Mom if they needed me. This began the long road with me getting only three-four hours of sleep a day for the rest of their lives.

In late March, he was admitted to the hospital with a high fever and what they thought was pneumonia. They released him on March 30th with the stipulation that he had to have a hospital bed before he was discharged. I explained that he had the sofa bed, but they insisted that he had to have a hospital bed. So that was brought in along with a pressure mattress and trapeze for the bed. I had to do some fast moving of furniture as well as give our organ away to make room for the hospital bed. But I knew we'd make it. Del came home on March 30th. On April 2nd, his fever came back and was 103.5. I had to take him back to the hospital, until he was released on the 12th. The hospital ordered a visiting nurse who came to help us. I noticed he was running a fever again and called the MD. I was beginning to think that he thought I was looking for a break, considering that I was the full time caregiver for both Mom and Del. I had the nurse take his temperature and call the doctor. He couldn't figure out why Del would get rid of the high temperature in the hospital only to have it come back when he got home.

Having a small-built frame, I found it difficult to get Del up on my own. I found a transfer belt in a catalog by North Coast Medical. Different from a gait belt, it has handles on both sides and in the back, and it is tested to bear 1,000 pounds. I could literally pick Del up with one hand if necessary. The Emergency Medical Service and phyical therapist were very impressed with this belt.

On April 18th, I went to get Del up out of bed. He was cooperative and pretty easy to handle with the transfers. He almost fell into me and was so weak that I had to fight to get him in the wheelchair. I took him to the bathroom. He was burning up with a fever of 104.5. I called the doctor and was told to call for EMS. When I got Del off the toilet, I smelled the worst foul odor I ever encountered. He was admitted to the hospital again. They couldn't figure out what was wrong and called in the Infectious Disease Specialist. In the meantime, Del was becoming weaker by the day with the nagging symptom of a foul odor when he had a bowel movement.

My son was afraid his dad wasn't going to last much longer. Del moaned so much that the nurses put him in a private room. I received a phone call early in the morning from a surgeon needing permission for emergency surgery. Del was allergic to E-Myicin

The allergic reaction caused his bowels to completely shut down and his colon to nearly explode. If this happened, he would die. The doctors said they may have to remove his intestines and colon to save him. Fortunately, they were able to do what they called a double barrel colostomy. Del would survive!

He came home on May 12th as an incontinent man who had to wear diapers. This man who had prided himself on being every bit a man was now reduced to an invalid who depended on me more and more. The roles had been reversed but not by choice. I had a very weak stomach and had to master the art of the colostomy. God, I was frightened! But my husband depended on me for his life. I was the only one for him and Mom.

I still had the services of the visiting nurse, as the doctor said Del would be bed-ridden for at least three months. The doctor ordered me a Hoyla Lift so I could transfer him into the recliner or wheelchair. Physical therapy started a couple of weeks later and we had Del up once again.

His speech was so incoherent that I couldn't understand a simple yes or no from him. I was starting to have to give him soft foods and add Thick It2 to his liquids. I taught him to tuck his chin into his chest whenever swallowing so he would have an easier time. It also helped prevent aspiration, which is food or fluids going directly into the lungs. Many patients have died from this condition.

In June, I thought we were on a roll, as Del seemed to be doing quite well and there had been no hospital visits. Then he got a fever again. It turned out that he went back in the hospital, as he had an infection in the blood. There were three trips to the hospital for this before it was straightened out. The night Del was admitted, I had to take Mom down to the ER. Because her leg was so swollen, I had the nurse look at it and she immediately called the doctor for me. Mom was admitted for congestive heart failure and put on the floor below Del. With the the Alzheimers, she gave the staff problems, so I bounced between her and Del for ten days.

The hospital staff allowed me to bring Beau, our little Shih Tzu, up to the hospital to help calm Mom down. This worked so well that Beau was allowed to come in whenever Mom or Del were in the hospital. Mom and Del were released one day apart and brought home in an ambulance. When I looked at Del, I couldn't believe what was happening to my hulk of a husband. He had always been so strong and so healthy.

Our friends didn't come around anymore and neither did Del's five children from his first marriage. Only one would bother to call and come over maybe once or twice a year. Everyone was deserting us except for my son, Chris, and his family.

We were able to get Del a power chair, so he could get out more. Our city councilman was in the carpenters union, and he was instrumental in getting a 50 foot wheel chair ramp constructed in January of '98. Del was unable to walk down the stairs, even holding on to the rails and using me for support. The only thing Del could do was watch TV. The neurologist suggested Play Station to help keep Del's mind and limbs mobile. Del loved Play Station, as I was able to find a fishing game for him. He would spend hours trying to catch a fish. Del was never one to give up. He was always so persistant in everything he did. Even though I couldn't make out what he was saying, he'd keep trying until I was able. It broke my heart to see this once so vibrant and eloquent speaker being unable to communicate anymore. He wanted to get out in the yard and run the lawnmower in the summer or the snow blower in the winter. There was no way that he could do any of these things.

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