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Reed Hughes - symptomatic
Onset of symptoms: age: 34 Birthdate: 8/16/57 |
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Medications: Zinc Acetate (Galzin) Tetrathiomolybdate |
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| How My Wilson's Disease was Discovered | |
| Reed's mother found Wilson's Disease in a book in the Comfort, TX library (town of a few hundred). She sent me the information in December 1995. For the first time I noticed Reed's eye color had turned to mud. Unfortunately, as his caregiver, I quit looking in his eyes and didn't see the change. We insisted on a slit lamp exam at a doctor's check up. The Kayser-Fliescher rings were present. She also discovered the program in Ann Arbor and Dr. Brewer, our miracle provider. |
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| My Symptoms Before Treatment | |
| October 1991, while attending a business conference, Reed's hands began to violently tremor spilling coffee. Slight hand tremors coninued for the next couple of years with the head, arms and legs occasionally involved. He was sleeping a lot and was very obsessed with finding the right religion and get rich quick schemes. Went to Dr. Rho in 93. Spent a year trying different drugs to control Benign Essential Tremor, the diagnosis he gave us. After continuing to worsen, Reed asked for more help and was referred to Dr. Jankovic. By the time Reed saw Dr. Jankovic, fall 94, he was unable to write, do buttons, control eating utensils--daily activities were being affected. He also gave the diagnosis of Benign Essential Tremor and gave Reed Attavan. Early 95 we asked to get Reed off Attavan because we couldn't figure out what symptoms were from the drug and what was Essential Tremor. Spring 95, while taking a walk, his legs sped up, he blacked out and fell on his face. He ended up in the hospital for four days. We were told at this time he had Parkinson's symptoms because of his frozen facial features. He was put on Leva Dopa and encouraged to submit to the experimental Deep Brain Stimulator surgery. He spent the summer with his mother trying an holistic approach to a cure. His family life was non-existent because of his apathy towards us. He coninued to deteriorate and was losing weight. By Nov, we talked him into doing the surgery and went to KU Med Center because they had successfuly done forty of these procedures. As soon as the surgery was over, Reed was unable to walk or talk. He couldn't even hold his upper body up. However, his right hand tremor was better. Took him back to TX, saw Dr. Jankovic and he told us Reed now had Parkinson's Disease, as well as, Benign Essential Tremor. More drugs were given and physical therapy finally started. By the time he was diagnosed and began treatment in Ann Arbor, MI, Reed was on baby food and ensure (which is extremely high in copper) because his swallowing was so bad. (One day, while feeding him I counted his chews per bite--it was a consistent 60 chews per bite before swallowing.) He couldn't get out of chair without help, he threw his legs forward at a very fast pace while walking, his face was expressionless, no muscle tone and muscle mass had diminished, drooled constantly, didn't roll over in bed, tremored violently, his head was too heavy to keep up, etc. Reed was very self absorbed (on survival mode), almost like an infant. If his needs were met, every second of the day, he could tolerate life. Eight weeks in Ann Arbor. Four months at a local rehab with intensive physical, occupational, and speech therapy. He came home in August 96, because of insurance, still unable to walk. On Christmas morning, he gave me the gift of pushing out of his chair, walking to the bathroom, using it on his own, and flopping back into his chair. By the end of January, he was able to do this consistently. By May 97 he was able to drive, talk, and do most large motor functions on his own. Once his voice kicked in-he talked ALL the time. June 1998, Reed is working part time and has a great appreciation for his life. Tremors are still a huge problem. He can't write or feed himself which keeps him from working fulltime. His brain tissue may have been damaged too much for the tremors to subside; however, we are hopeful that they will indeed disappear. |
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| My Symptoms Now | |
| June 1998, Reed is working part time and has a great appreciation for his life. Tremors are still a huge problem. He can't write or feed himself which keeps him from working fulltime. His brain tissue may have been damaged too much for the tremors to subside; however, we are hopeful that they will indeed disappear. He does get cranky and frustrated, at times, with his tremors. He will try to do a simple task, he has done all his life, and is unable to do it. He must also deal with anger at his doctors that allowed him to have an extra year of brain damage and major deterioration. We hope our lawsuit settlement will alleviate some of that anger. He takes his zinc three times a day. He also follows some of the recommendations in the book Prescription for Nutritional Healing. There is a whole section devoted to Wilson's Disease in the new edition. Seems almost too easy. |
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| Additional Comments | |
| The nightmare of Wilson's Disease has taught this family a lot. Reed was a dynamic sales rep for an ice machine company. The money and respect he had achieved was the definition of his life. It was traumatic to lose that status and begin over. He was very involved with his three sons lives. Camping, golfing, hiking, travel, helping at school--were activities that stopped when he got ill. His oldest was 14 when Reed's apathy toward him began. That apathy was very damaging to our family unit, even more then the physical incapacity. Two years later, Reed wanted his place back as father of the family and no one was willing to give it to him easily. There are still struggles with his now two teenage sons. However, we have so many terrific days, it is hard to remember how bad the bad days were. Hard to remember but not impossible. Reed's youngest son was six when his dad withdrew from his family. They have developed a true father son connection and enjoy being together. Small miracles throughout this ordeal kept us sane. Our faith went through days severely damaged; however, we are spiritually stronger then ever and have a deep commitment in family. We have learned what true friendship means and value the small tight circle of relatives and friends that helped this family survive. We also have a HEALTHY distrust of the medical, judicial, and insurance institutions. When going for a second opinion with a doctor, we will never give the name or results of the previous doctor visits. We have also met some special people fighting WD and their families. We've been blessed. |
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| Contact Info | |
| Reed Hughes (THUGHES780@aol.com) 41 Berry Blossom Drive The Woodlands, TX 77380 tel: (281) 292-0310 fax: (281) 363-4168 |
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