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Karen - Colorado
This is a short story about my wife of 40 years, Karen. She started showing symptoms of Multiple Sclerosis in February, 1982. Her symptoms over the last 23.5 years have been:
Progressive loss of strength in her legs and hands. She has been so weak the last year and a half that she was only able to take a step or two associated with transferring. She has not been able to leave the house except to go to the hospital or doctors office. Her handwriting became almost unreadable and the tingling in her hands never subsided. In April of this year she fell, breaking her ankle for the second time in three years.
Pain so severe that she was on 18 ml of liquid Methadone and 600 mg of Neurontin per day. Her skin was extremely sensitive to the touch and she had muscle spasms which required her to take Amitriptyline, 300 mg per day. She has been taking Amitriptyline for 23 years and Methadone and Morphine for 22 years. None of this medication eliminated the pain, only dulled it a little. The medication caused her to sleep a lot during the day and she would have to take Valium and Ativan at night to sleep.
Her vision became erratic. She would get glasses for reading and distance only to have to change the strength in a month or two. On occasion her vision would be lost in one eye for a few weeks, for which the doctors prescribed steroids.
Karen has not been able to sleep in a bed for over 15 years because of the pain of lying flat. Taking x-rays on a flat hard table or lying flat in a hospital bed caused her excruciating pain. She found that a recliner allowed her to sleep, so she has virtually lived in a recliner for the last 15 years.
Her MS has never gone into remission. Sometimes she would have a little upturn, always followed by a downturn. Anything exciting or sad affected her in a negative way.
Her short term memory had gotten to a point that she would say the same thing two or three times in a very short period. A side benefit of this memory loss was that re-runs on television were always new to her. She could not handle any problems associated with her health, finances and the household. Social Security required that I be appointed her custodian to handle her money associated with Disability Compensation.
She became very depressed, often hoping that she would pass on so as to not be a burden to others and eliminate her pain. She had no quality of life.
From April 16th to June 12th of this year Karen was in a nursing home. Her ankle was broken and she was totally non-ambulatory. By the time she left the nursing home she was able to transfer, but that was all. This was the lowest point in her battle with MS. By the 18th of July, Karen was still only able to take two or three steps with a walker and transfer. She was doing light exercises with the help of a physical therapist. Her pain was increasing in intensity, requiring an increase in Methadone. She had 24 hour care, seven days a week. The outlook was very grim.
I have tried to explain her condition so you will understand that what has happened since July 19th, 2006, is nothing short of miraculous.
On July 19th, 2006, Karen started injections of an experimental vaccine designed to assist with the symptoms caused by the auto immune system attacking the myelin around the nerves of the body, symptoms which are associated with Multiple Sclerosis. As of today, August 20, 2006, Karen has had 10 injections of a series of 12. Her condition has improved as follows:
The pain associated with MS is gone. We have been able to eliminate the Methadone completely. The Neurontin is down to 100 mg per day and she is only taking that because of concern of withdrawal symptoms. The Amitriptyline is now down to 50 mg per day, again the only reason she is taking it is because of withdrawal symptoms.
Karen is able to lie flat without any pain.
Karen is alert, able to converse in normal conversation for hours. Her short term memory is improving significantly.
The tingling sensation in her hands is gone. When she first noticed this she said her hands felt soft.
She is now walking around the house without her walker. She is able to go up and down seven steps when walking out to the car to take a drive. She is walking outside, able to shower by herself, dresses herself, and goes into the kitchen to get whatever she wants. She will use a walker when she is alone as she realizes the need to build her strength and stamina as well as prevent any accidents. Her legs are a little sore after a day of walking around the house or visiting her family, something she has not done in over a year and a half. To top off her new found walking ability she informed me that she wanted to run to me. So for a distance of about 25 feet Karen ran toward me, hugging me with excitement. She has since done the same for her brothers and children.
On August 12th Karen realized that she did not need her reading glasses when reading her birthday cards. Since then she has found that she does not need her distance glasses as well.
Her attitude is one of overwhelming joy. She is excited for the next day and what progress and new things she can undertake. She is now starting to realize that she has a life again with me, her children and grandchildren.
We have been able to eliminate the CNA we had each and every day. Karen now has a lady coming in to clean the house and help her with cooking. This also provides her with someone to talk to with her new found communication skill.
Karen has had no negative side effects from taking this vaccine. The day after taking her shot (we give it before bedtime) she is a little tired and somewhat grumpy, as she proclaims. This effect is a small price to pay for the benefits Karen, her family and I are enjoying. The muscle soreness caused from using muscles not utilized in years is handled with Aleve instead of narcotics.
Karen still has Multiple Sclerosis, but her quality of life has improved beyond our greatest imagination. Karen still gets tired, but a short rest seems to help. Karen tried this medication because MS was taking her down and the established medical community could do nothing for her. We took a chance because this was our only hope. We took a chance because we saw what this medication did for Alan Osmond. We took a chance because I wanted my wife to live. I don’t understand exactly how and why this medication works, but I can tell you beyond any possible doubt that it does. The results my wife is having are real and conclusive. Will the results be the same for everyone that is administered this medication? I do not know, but I will tell you it is successful to this point for Karen.
I am telling you this in the hope that others will try this medication and experience some or all the joy we are embracing after almost 24 years of trying to cope with this miserable disease. I have no financial interest in the success of this drug, though I wish I did. This is not the end of this story by any means. May you be blessed as we have.
August 27th, 2006 Karen and I celebrated our 40th wedding anniversary. With the progress Karen has shown my three children thought the occasion was right to have a renewal celebration. With 50 people in attendance Karen was able to walk down the isle, stand with me for about 10 minutes, participate in all the pictures and enjoy the company of family and friends. With “Islands in the Stream” playing I was able to dance with my bride for the first time in so many years I am not sure of the last. As a special treat my children arranged for my wife and I to stay at a Hotel in Black Hawk, Colorado for the night. While we are not into gambling my wife does enjoy pulling the “one armed bandits” on occasion. After a late dinner she asked me if I was too tired to go down to the casino. She asked me—unbelievable. So we went and had fun until midnight, fun that she has not had in years. Later Karen was able to sleep in a regular bed for the first time in some 15 years.
She has not had an injection of the vaccine in over a week, as we have completed our first six week session. The withdrawal from the pain medication she has been taking remains a problem. We are planning on continuing the vaccine for another session, as it seems it may be necessary to continue the upward progress Karen has been making. She has made 10 steps forward the first six weeks and one backward this last four or five days which we believe is due either to not taking the medication for a week or coming off the narcotics she has taken for 23 years. The one step back is nothing major, just that she does not feel the desire to be as active as she was last week. Karen’s remarkable story will continue.
Hugh – from Colorado |
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