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Kay's Multiple Sclerosis


Kay's MS 1992 - 2009
                                                                                Kay's MS             
     In early January, of 1992, Kay awoke and was numb from her armpits down.  Over the next week she had a variety of tests and finally the neurologist told us she had Multiple Sclerosis (MS).  He told us that we were lucky and that the MS symptoms  would start to go away in the next few weeks and she would recover about 95% of her abilities.  Then, in 6 - 10 years she would probably have another attack and would recover about 95% of her pre attack abilities.  At 45 that would give her a long and fairly good life.  Not the greatest news but we could live with it.             Sure enough, in a few weeks she started to get feeling back and we were greatly relieved.  But, by the end of January she lost her far vision.  As that started to return she had another motor function attack.  As she started to recover from that, she lost her short vision. Each time she recovered but not as much as we would have liked.  By August, she was out of work, totally disabled and legally blind. (We were lucky it was only MS?)             Her eye sight improved a bit but in November she had to have a gall bladder operation.  The big problem would be the  anesthetic. They had to use special kinds for people with MS. In 1/3 of the cases peoples MS symptoms  improved after use of the anesthetic. Another third stayed the same but with about 1/3 of the people, they got worse.  She decided to go ahead because 2/3 were in her favor WRONG! After the operation she got worse and her sight declined and didn't improve.             In a matter of just a few months she went from being super wife, super mom, super sister and daughter, super neighbor, super friend, super volunteer to being totally dependent on others.  Her motor functions were very poor and she couldn't see to read a book, drive or watch TV.  She did, though, have just a little peripheral vision. So, she could see a little to get around the house.  I, too was a basket case.  I would have done anything, gone anywhere, spent any amount of money to help her.  We looked into procedure after procedure and scam after scam.  Searching for a thread that might turn into a string that might turn into a cord that might turn into a rope we could cling to. Nothing.  A big negative was the fact that the MS associations, local and national, kept repeating there was nothing we could do.             In December we got a card from a friend who told us about someone they knew who used to have MS.  "used to" have MS?  No way!!!  We knew recovery was not possible.  Then in February, I decided a phone call couldn't hurt to I called the guy.  He had been bed-ridden until he went to Germany for treatment.  Now he was OK and even drove his car.  He told us of others who had received a great deal of help from Germany and he gave me the name and phone number for the Brewer Library.              I called them and they gave me the names and numbers of 10 or 12 people around the country to call about the treatment.  I knew that they wouldn't give me names of people who would say the treatment was a scam but I called them anyway. The list included Drs and professional people.  Based on what they told me I couldn't ignore the treatments.  The people at the library helped put us in contact with Dr. Hans Nieper (he recently died)  and we made arrangements for Kay to go to Germany with her mother.  I didn't really think it would work but I couldn't refuse her the opportunity to try.             During the call I got on her 3rd day there, she told me she had walked 5 or 6 blocks and she felt great.  (The hotel bill was more than the Dr.s bill)             She was so improved I couldn't believe it.  Although her eyesight hadn't improved as it had for others who had the treatment, her motor functions were greatly improved.  So, for the next 5 years we imported the liquid from Germany and she received three shots a week.  Sometimes the drug enforcement people confiscated the material but it usually got through OK.   When it was  held up, I wrote to them and they eventually sent it on to us.              Some people are NOT helped by the treatment.  Most we know of, though, have been.  A lady was bed ridden for 18 years and now you couldn't tell she had MS. Another lady took the shots for 1 year and a half with no results. Then, one morning, she woke up and she was better.  Annette went and didn't receive help but she didn't continue to take the shots.                Personally, I think it is like bee sting therapy.  It works on some and doesn't on others.  If I had MS, though, I would go to Germany in a second.  I wouldn't take the chance of not trying it. I would also try the bee stings.  It has worked for hundreds of years for lots of people and we knew an MD who kept a hive for his own MS.              Then to top things off, she had to have a bladder operation. Because she had MS they used special drugs to knock her out. Even then she had a negative reaction to the stress and went down hill a bit.  Here is info about the Brewer Library. The library is:  A. Keith Brewer International Science Library                                  
  325 North Central Ave                                    
Richland Center, WI  53581                                    
(608) 647-6513
    They will give you names of people to talk to.  If you decide to go they can put you in touch with a travel agency that is very helpful. Also, call Kay.  Really. Feel free to call Kay at (925) 672-3470.  People at the library can also provide the name of a good travel agent that helped us get there and back.

8/99 update            
Kay is on ZOLOFT. It keeps her attitude OK but the side effects are a bummer. It . .well if you take it or have a very close friend who takes you know the main negative side effect.  A real negative but it keeps her alive.               
Kay's father had a heart attack and died. The stress was too much for her and she has declined a bit more.

     However, I am looking into procarin and we will try that for a few months. 
10/1/99 We have started procarin and look forward to great improvement.
12/99  We stopped procarin. No benefit
1/2000  Started again because of a new treatment of procarin but it didn't work either By March of 2000 We had spent something like $1,000 on procarin with no results of any kind. (I joke, That could have bought me a lot of Tequila)      Needless to say we stopped it .. The biggest problem is the "let down" after being so full of hope.  However, the other side of the coin is that MS is very different for each person and so are things that may help AND, if we hadn't tried procarin there would always be that "what if" question in the back of my mind. So, that it didn't help Kay is no reason to not try it.            
OCTOBER, 2000    Kay has lost the use of her right hand and arm and most of the use of her right leg/foot. But she can still get around the house with a walker.  If we go out it is with a chair.. March 2001
         Kay has been exercising daily with a stationary recumbent bike.  The strength in her legs has improved and so has her feeling of self worth.  July, 2001
            Well, we are still at it.  Lucky I could "retire" at such a young age so I can stay home and care for Kay.  We were told we should get an electric wheelchair for Kay but the added expense of getting something put on the car to carry it is too expensive. Insurance will not pay for a carrier. Only the chair.   Oh, well. February 2002
            We got a flyer from the local MS Support Group and in it was a small item about a test of a new drug called Rebif.   The Dr. in charge of the local testing is Kay's MS Dr. so I called and on 2/5 we went over to find more about it.  We were told that Rebif  is better than Avonex and that the test would go on for 6  months. At the end of the test if Rebif wasn't approved in the US they would continue to supply us with it until it is approved which they hope will be early 2003.              From what they showed us and what I've found on the WEB Rebif slows the progression of MS better than Avonex. We started it on 2/12. Three shots a week but the needle is only about ½ inch. We'll see how it goes.  As of June, 2002 I am giving her three shots of Rebif a week.  Her attitude seems pretty good but that is because of the ZOLOFT.  Without Zoloft I am sure she would have ended her ordeal years ago. She doesn't talk to me about it but has to friends who have shared that with me May 2004
   Kay fell and broke her right fibula.  She was walking to her bedroom using her walker when her right leg just gave out and down she went.  Thought it was alright but a nurse told us we should go to the hospital anyway just to make sure.  We were wrong and it's a good think we had it checked out.  Lucky we just got the electric wheelchair.  She will not try to walk again (even with a walker) just to make sure she doesn't fall and do worse next time.
June 2005
  Kay is in the electric wheelchair permanently and has adjusted to it pretty well. She "could" walk with a walker but prefers to be safe.  I marvel at her continuing positive attitude.  October 2006
  Kay's Mom died in September.  It is a very difficult time for her.
2008  Dr wanted Kay to go to Physical therapy. Kay DIDN'T want to but said she would go once and then cancel the rest of the appointments.
     She liked the lady therapist and decided to go a second time.  The therapist was so encouraging that we started going twice a week.  Within 6 weeks Kay took her first steps in four years.  Sure. It was between the parallel bars but she took steps.  January 2009  Kay can walk ten feet up the parallel bars and back four times. That's 80 feet. Amazing! WE are so happy.  She will never be able to walk unassisted, but this sure builds her spirits..... 
April 2008
   Kay has more and more difficulty getting from her Lazboy recliner  we are going to have to get a new one that is electric and will help lift her up. She can't stand but it may lift her up to where it will be easier to get back to her wheelchair. 
   We have a new Lazboy recliner for Kay.  We have a long couch will recliners at each end and we both had individual recliners but now Kay has an electric one.  Of course the leg lift helps with circulation in her legs but now she has a lift to help her and a massager that will also help with circulation.  It's one of the best things I could have bought for her.

March 2009
Kay is now taking Betaseron.  Our co-payment for Rebif was up to $593.00 a month and that was just too much.  Better than paying the $2,370 full price but still. The Betaseron a  lot lot lot less expensive.
July 2009 
Kay fell twice in one week. Because she has so little feeling in her right side she didn't realize she was hurt until I saw her ankle swell up.  Cracked two bones in her right foot and ankle. Big set back for her trying to walk.    
September  2009
     Starting all over, again to try and walk along the parallel bars.  Probably another four weeks, or so to build her back up to walking but she is working at it.
   OOPS! Kay's recliner stopped working for the third time in 17 months. It is so difficult for her without it. I'll probably go to Penney's  or somewhere to get an inexpensive recliner to have in reserve for when the electric one goes out.  The weekend was very difficult without a recliner that worked. A service tech. came today (the 22nd). He plugged the chair back in (I had disconnected it Friday when we couldn't get it to work) and everything worked just fine.  LaZboy went to a lot of trouble to get someone here ASAP for Kay and then all he did was to plug it back in.  I'm just shaking my head.  Why didn't it work Friday evening????
9/21 My birthday and Kay walked two steps at therapy, this morning. Great birthday present.
   Where does the time go?   The last entry was 2009 and here it is 2013.
Since Kay started walking between the parallel bars she increased her ability to walk, holding on, that amazed us Then in 2011 she fell and couldn't use the bars for a few months.  When she started up, again, we were thrilled and she was so grateful.   Last year, she fell, again, and has not walked since.  She wants to, so bad but is concerned that her leg will buckle again and she doesn't want to fall again.
   Although she is still sitting in front of the big TV listening to books on tape and watching QVC, like she has for the last 21 years, her attitude is remarkable and up beat.

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