(Mr. Geoffrey Tinker wrote this in tribute to his wife Rita, and as a contribution to scleroderma awareness. Rita struggled with scleroderma and overlap conditions for over 40 years.)
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This is the story of Rita�s struggle with SCLERODERMA, an autoimmune disorder affecting the skin, connective tissue, glands, the small arteries, blood vessels and internal organs. It could be said that Scleroderma (SD) is difficult enough to pronounce, let alone explain, as it affects its victims in so many different ways. It can cause the skin/tissue/organs to scar and become rigid.
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In some ways it is our story. Rita was 18 and I was in the Royal Canadian Air Force when we met early in world War 11, in Ottawa, Canada. We were married in 1946, raised three wonderful children, all well, and we have four grandchildren that bring a twinkle to the eye.
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In 1960, a kind, older and recently retired dermatologist, examined Rita�s ulcerated fingers and took me aside afterwards, indicating that he thought it was Scleroderma (SD), but hoped it was not. Hospital tests of tissue confirmed it shortly afterwards. The Raynauds aspect of the disease resulted in cold-induced spasms of small blood vessels in the hand and resulted in ulcerations, including a gangrenous finger tip that was lost while hospitalized. A trip to the Mayo Clinic in Rochester, Minnesota, USA confirmed the diagnosis - Progressive Systemic Scleroderma - and provided some prognosis.
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Esophageal dysfunction (diminished motility and narrowing of the esophagus) started requiring dilation every three months, by 1971, and continued. Elevation of the head of the bed was also required. Another set back occurred in the late 1970s, with acute arterial occlusion involving major arteries of the left arm requiring hospitalization. It may, or may not have been SD related. A further condition of the disease, Sjogren�s Syndrome, began to dry the eyes and mouth by a collagen build-up in the salivary and tear glands. There were concerns about the corneas of the eyes and it also involved rapid deterioration of the teeth due to Xerostomia, a severely dry mouth.
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In 1989 Rita awakened one morning with a feeling we all know, having the arm and hand tingling. We refer to it as the arm being asleep. Only in Rita�s case it didn�t go away. There were compressed nerves (ulnar nerve) and vascular damage to the left arm including some wasting in the left hand, and again, hospitalization. The pain was reduced to a lesser degree by medication prescribed. There was also an esophageal spasm at this time, that first was thought to be a heart attack. Nerve-ending pain caused suffering including an attack of shingles.
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Other discomforts included burning and itching of the feet, and again, pain in the left arm from time to time. In 1992 Rita had a Transient Ischemic Attack (TIA) or Mini Stroke.
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Around this time the rapid deterioration of the teeth affected by the lack of saliva, became more acute. Dentures were not considered workable and dental implants were proceeded with.
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This took place over a period of about one year, including extraction of all teeth and the implants in the jaw bones, with a period of dormancy to ensure the implants were not rejected...another troubling time. The dental implants provided a much stronger biting capability and no more tooth decay to contend with. They took some time getting used to, but were acceptable cosmetically.
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In the summer of 1995 Rita suffered further and more painful nerve damage. After many tests, (Cat Scan, MRI, EMG) and the involvement of a few doctors, it was determined by the latter test that blood vessels in the left arm were malfunctioning, becoming fibrotic and causing damage to the radial nerve. Morphine dulled the excruciating pain, and after a few weeks there was wasting in the left hand, with a floppy wrist and curling of the fingers. The left hand had lost its strength and dexterity with what was described as radial nerve palsy, SD/Sjogren�s related. The drugs Prednisone and Imuran were prescribed, plus therapy - with close monitoring of blood pressure. By 1996 this condition had improved.
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In 1996 Rita experienced severe abdominal problems which resulted in surgery, which was unsuccessful; and further surgery, a Colostomy was performed in 1997. This may have been partly related to SD. The following year at Christmas time, Rita had a further, and apparently Sjogren�s induced, vasculitis - again on the left side, but this time affecting the ankle and foot. An Angiogram followed by Angioplasty was carried out and improved the circulation of blood in that area. In March 2000, Rita underwent surgery to correct a Very Difficult to Live With prolapse problem. The other concerns involving the GI Tract, the lungs, elevated blood pressure and sometimes low blood count, continued. Rita managed her medications well (and there were many) with the help of her Rheumatologist (SD Specialist), Family Doctor, Gastroenterologist, Vascular and Pulmonary specialists, Opthalmologist, Internist, Surgeons, Dentist and Pharmacists. With the number of specialists involved it was sometimes difficult to obtain an overall holistic medical approach.
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By the year 2001 there was that greater need for warmth, her stamina had declined and a wheel chair and oxygen were required. A period of hospitalization occurred in January due to dementia and extreme weakness. A spinal tap and blood tests indicated a critical potassium and sodium deficiency. Changes in her medications corrected the problem. A little later in the year there was more discomfort and pain in the left leg and foot. In June, a vascular bypass operation was carried out to improve circulation in the left leg and foot, and amputation of a portion of one toe. There was some improvement initially, but pain and discomfort to the foot re-occurred. A sympathectomy (eliminating the sympathetic nerve running to the foot) to eliminate spasms in the blood flow to the foot was performed in October, but with not very good results. Finally, in November, with the foot showing marked deterioration, Rita had to face amputation of the left leg below the knee.....and extended hospitalization. This was followed by further amputation above the knee because of healing difficulties.
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Notwithstanding the medical setbacks, we made a happy married life together, trying to make the best of the circumstances. Oh yes, there were difficult times, particularly in the latter years and with the ever-present and increasing fatigue becoming more pronounced, with accompanying debilitating depression. Our lifestyle had to change with most of our retirement plans not being realized. Even a lady�s prerogative of shedding a few tears to temporarily ease the emotional suffering, has been denied. On occasion I would find Rita struggling to cry...but there were no tears! The drying of the tear glands (severe Keratitiis Sicca) due to Sjogren�s had precluded having a good cry.
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Rita had to procure, to a great extent, something we take for granted...tears and saliva. Side effects from some of the medications she took would compound the dryness problem.
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Rita was only too aware of what SD has done, for there were constant reminders, physiological and psychological, and Rita chose a quiet and private lifestyle. During the last 20 years we have lived in the SW corner of Mainland, British Columbia, near our two daughters and families in one of the mildest climates in Canada. We received help from Langley Red Cross in the initial loan of equipment, and very kind attention by the nurses in the Langley Home Support Service.
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My Rita was a stay-at-home Mom, and the family benefited greatly....she was always there for us. As I pursued a career in the Canadian Armed Forces that happy home life was a real benefit. Rita was a great Mom to our three children, and Nanny to her grandchildren, and a �Dear Heart� to me....a song we remembered during periods of absence. I have mentioned the difficulties with her hands right from the onset of the illness. Those Scleroderma hands, frequently cold and painful and hard to the touch....Rita�s hands.
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Those hands that did all those wonderful things attending to family needs, caring for us all, sewing, presenting delightful meals; also attending social functions which were essential to my career, when Rita would have preferred to be at home....and quiet.
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We spent our final years together living quietly in our Langley, BC home, on our treed lot, with nature all around us (and encouraged to stay with feeders.) Also included was attending to my two furried friends, pals next door waiting for their romp through the woods. It did me good to see all that happiness. In a way it was good therapy with many indoor and outdoor chores to keep me occupied. We made the best of times out of the most difficult of circumstances. Although I was not always able to lift Rita�s spirits, it was always my wish to help her down Life�s trail. Rita and I watched the sun go down from her 10th floor St. Paul�s Hospital (Vancouver, BC) room and I said to her �See, the sun is going down on Canada.� That was her last sunset. Rita slipped her earthly bonds on December 16, 2001 at the age of 78. We had been married over 55 years. She will be missed greatly by her loving family!
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Col. Ret�d Geoffrey Tinker
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