Happy to Be Home from the Hospital!

After six days of being poked, pricked, and prodded, it was wonderful to wake up in my own bed this morning.  I had slept for 11 hours when Gerald came in to wake me so we would have time for him to give me the scheduled Lovenox shot before the home health nurse would be at our house right after lunch.

Last Sunday, I realized I was not only feeling much too tired, but I was also having trouble with breathlessness.   Brought back memories of 2008 when I was hospitalized in Barnes in St. Louis because that was where we happened to be for an appointment with Gerald’s heart doctor.  I still feel bad that I stole his appointment time and his doctor sent me to the hospital, where clots in my leg and heart were treated.  The doctors there were convinced the clots surely developed because three weeks before we had taken a trip to Georgia.  (Gerald suspected it was all my hours surfing and writing on the computer, and I was inclined to agree with him.)  But regardless, I got well. Mary Ellen was living in a suburb there, and she came to visit me every day until I was released with a prescription of warfarin to keep my blood thin. 

Gerald built me a little box for my feet under the computer to shift my legs onto, and I tried to remember to get up and walk around once in awhile.  However, the truth is that one reason I enjoy writing and surfing is that I go into some kind of brain zone that blocks out the world. The concentration is very pleasant to me, and when I could, I often sat for hours without realizing how much time had passed.

I continued taking warfarin, but after a few years, my primary doctor assured me I could go off the drug if I wanted.  We were getting ready to take a trip to Oklahoma City for the softball world series and on to my sister’s in Amarillo, so I turned down the offer to go off.  From then on, at my annual check-up, my primary doctor would tell me I really would not have to continue taking warfarin. I would sheepishly answer that I must be psychologically addicted to it to give me a sense of security. 

But as our daughter Katherine’s health worsened and I spent more time with her, I found it more difficult to make time for the regular INR check-ups that warfarin requires.  I began to feel silly that I was choosing to take a drug I was told I did not need.  So at this year’s annual check up, when the doctor told me I could go off, I hesitated wondering what would result if we took a trip (which we probably cannot do).  She assured me I could temporarily take a new drug and have that security for the trip.  I went off warfarin and felt free as a bird.  No more trips to get my blood checked.  No feeling bad when I got home so late it was really the next day before I actually took my supper pills including the warfarin, Taking only three pills (two of which were over-the-counter) instead of five made me feel so healthy!  

However, I continued to feel (as I had for a year or so) tired after 9 or l0 hours of sleep when I was able to get that much, but I figured that was part of being 80.  So the week before last, when I felt a bit more tired than usual, I did not think much about it.  It was not until the weekend that climbing the stairs was making me extremely breathless.  Fearing something was wrong with my heart, I decided last Sunday to call my primary doctor the very next morning.  Since I had taken no trips and I did not need warfarin any more, I did not worry about blood clots. 

The doctor’s office quickly made me a work-in appointment at 2 on Monday.  I ran into town to pick up a thyroid prescription waiting for me at Kroger.  I’d been too tired to go by for it after I had finished a shift at Katherine’s on Sunday afternoon because an aide was sick.  I got the prescription and some bananas that Gerald needs daily with one of his meds and which I have been trying to eat daily in hopes of avoiding the leg cramps I sometimes have.   Someone had suggested that Katherine might need a milk-free yogurt rather than one that might be causing her trouble.  So I ran a new supply of that yogurt by her house and offered to give her morning pills since there was no aide that morning.  By the time I had adjusted her and given her pills with juice and yogurt, I was breathing heavily enough she was noticing it as she had the day before and urging me to go home just as she did the day before.   I did not think she was as well as usual, but I was pleased an excellent aide would be there for the afternoon; and I knew if I made my appointment, I had to leave. Then the faithful and competent aide, who never misses and is always five minutes early, phoned that she was having to take another client to the hospital and might be late or not there at all.  (When I had time to call later that afternoon, I found out she had made it after all and had made sure the night aide would be there by seven.  However, she did not think Katherine was as well as usual.  And the next day Katherine was taken to her doctor and admitted to the hospital in Carbondale.)

With Gerald’s help, I made it to my appointment.  For the first time in our lives, he went in and met my long-time doctor and listened for me.  I was glad he was there because I was not thinking well and did realize that my doctor meant me to go directly from her office to the hospital for the CT scan.

All is well that ends well, I’ve heard, and all is essentially well here at the farm. Tests showed no heart damage.  The second CT scan (which was actually only over the lower half of my body although I did not realize it) was not to see if the clots were gone as I supposed, but rather to make sure I did not have the kind of cancer that could cause clots in the lungs.  The hospitalist, whom I liked very much, had already arranged for an oncologist to come if the tests showed cancer.  They did not. All this had taken place, and I had no knowledge or worry about it.  Isn’t that great?   The doctor was puzzled since there were no clots in my legs.  He asked, “Where did the clots come from?”  Blood tests sent off and already returned have so far given no answer, but I believe he said some were still out.  He did not want to expose me to an unnecessary CT scan since the thinner blood will eventually be at the right balance and the body will destroy the clots. 

Katherine was released from the hospital on Friday.  Her aide Katie, who lost her brother in a tragic accident so recently, is helping Katherine again.  Am I worried about her?  Terribly, but I cannot do much about it.  In fact I never could. Advanced multiple sclerosis progresses as it chooses weakening and destroying the body of the one it inhabits.   Do I believe in prayer?  Yes, and I am grateful that all over the nation people have and do pray for Katherine.  Long ago her friend in Nashville became angry when a prayer meeting she arranged did not stop the disease.  My cousin rode his motorcycle all the way from California to apply oil and pray for her recovery. I am grateful.  We allowed him to come if he promised not to get angry.  I really believed his prayers might bring about a remission or recovery.  Instead the disease continued to grow worse.   Many believing praying cancer victims die of their disease.  I did not even know I might have cancer causing the clots and uttered no prayer against cancer, and I got the wonderful news I was cancer free.  Life is not fair by human understanding. The writer of Hebrews tells us some get their promises fulfilled here on earth and some do not, but all are fulfilled.

That is where faith is helpful. Faith helps you to know when the answers you want are not given to you, perhaps there are reasons beyond human understanding.  Things that are seen are not the evidence of faith.  Rather faith is the evidence of things not seen.  So I believe and ask God to help my unbelief. 

Jesus taught us that pain is redemptive.  The two young girls hurt in same accident as the one that took Chris Williams’ life are recovering. The orange ribbons still deck the nearby church yard fence beside the highway. Hundreds (perhaps thousands) have prayed; and  just like the girls’ parents, the community is so grateful for the prayers and for the continued healing. Will something good come from the awful pain the wreck brought?  I believe so.

So right now I am home bound.  I am feeling pretty good, and I think the Vitamin B-12 shots given me are helping me with the fatigue I’ve had for a year or so.  Maybe being 80 is not the cause. That too is good news!

Katherine's Home from the Hospital

People are asking, so I better post to let you know that Katherine came home finally on Thursday.  We were originally told that she could come home Tuesday, which made me very nervous because I thought it seemed too soon although she was out of ICU on Monday even though they had no new room to move her to until Tuesday.  But we made all the arrangements to bring her home as we had been told.  In fact, they had even checked with the doctor to see if she could be out by noon to keep her 2 p.m. dental appointment. He said that was possible. When I got to the hospital early Tuesday, I learned that her newest INR reading showed her blood was too thin, so she would not get out after all.

I arrived at the hospital as early as possible Wednesday morning assuming she would be able to come home that day.  Someone unofficially told us her blood level was ok.  (Wrong. Actually it was still a wee bit high.) Her hospitalist doctor was off that day, and we waited for the substitute.  And waited. We were told he was on our floor before noon—but we never saw him if he was. Gerald was at home poised to drop everything and  go get her van as soon as we phoned him—the same as he had waited on Tuesday.  Finally late in afternoon, we gave up on being allowed to take Katherine home.  Actually I was not in any hurry, but she was. I felt she was safer in the hospital, but I felt sorry for her wanting to go home so would have welcomed that too.  At 6:15 that evening, I decided my day had been as long as I needed; and if the doctor came, Katherine could talk to him alone, which of course she did.

Again I arrived early on Thursday.  She was given the ok to go home, and we started gathering stuff and planning. It was amazing how much staff she had accumulated in a week’s time. Her dental appointment had been postponed until Thursday afternoon when we thought she was getting out on Wednesday.   Jeannie had texted that she would be down to help, and that took a big worry off my mind.  Gerald brought her home and drove her to the dentist in time for her appointment. I went to the drug store and filled two prescriptions, and called her aide that we were home.  The aide  came to help, and a friend brought a casserole.  I eventually went home to rest so I could come back with Gerald and Jeannie to help them get her in bed.  Jeannie spent the night.

The aide came Friday morning to get her out of the bed with the Hoyer, and when the aide went home, I came in.  Jeannie again came to help Gerald with the Hoyer and to spend the night again making the necessary adjustment that Katherine's pain requires.  Jeannie had spent some of her daytime sleeping time shopping for what she hoped might be more comfortable night wear for Kathy. I have been home both nights by 11, and I can sleep late again in the morning as I have the last two days.  Jeannie will have to return to the northern part of the state tomorrow as soon as she rests up for the drive. I will miss her.

Tonight’s blog should let everyone know that as far as the blood clots are concerned, Katherine is doing well. The multiple sclerosis  really does not seem any worse because of them. Since the MS and the constant pain was bad enough before the clots, we are grateful symptoms have not increased. That is a good thing.

We try to get daily texts to Katherine’s siblings, but I really do not have time to do more than that.  So just know if I do not blog or do not phone, things are going as well as we can hope, but there is just not time for much communication.

Busy Busy

A friend down in Florida phoned and indicated she had noticed my slowed-down blogging. That was good to hear. It is nice to be missed. Especially as a writer.

I like to stay busy. However, sometimes life throws you a series of activities, duties, and responsibilities that keep you not just in your chronically behind state but rather into a stop-and-take-care-of-the-most-important-things-now state. That seems to be where I am recently. Interestingly, just pausing and limiting my activities seems to sometimes feel less busy. Focusing on the necessary, I call it. I can’t say if that is good or bad, but what has to be has to be.

Our daughter Katherine has been very ill, and one of the causes of my busyness is sitting at the dining room table with papers spread out making calls to people on various caregiver lists. This is the second time since Christmas I have had this gig.

After my first efforts, Katherine had secured an excellent night worker who transferred her very well, but almost immediately that woman was hospitalized and cannot work at this time although she asked to be allowed to work again when she gets well.

The agencies that provide the lists of caretakers for their populations (Hospice, aging, disabilities) have no obligation to provide me the lists and are just doing so as a service, and I am very grateful. Nevertheless, although the lists have recent dates on them, they are hopelessly out of date.

One woman proudly handed me a new list and said it was all updated. When I started working with it, I could see it was almost identical to the list a couple months before with its many discontinued phones. Part of that particular problem, of course, is the trend toward giving up house phones and going to cell phones. But cell phone numbers are also often discontinued, message boxes full or never set up.

Calling these potential caregivers is an interesting experience. I had to smile when I called one number and the man answering said, “She has not lived here for five years.” I figured he was an exasperated ex-husband. Maybe not. I didn’t ask.

I also get amused at the people who are looking for work who may answer the telephone with a gruff voice and maybe just one lazy-sounding syllable: Lo. Then when you explain why you are phoning, they use a completely different voice. Not so amusing, however, is my learning that some people with a very pleasing voice turn out to have assault records. I have had to admit that I cannot judge character by voices. (At one time I thought John Edwards seemed liked a kind upright man. How else could he have won someone like his wife? Obviously I cannot judge character. At least, that was before I learned about the price of his haircut, which gave him away.) Sorry for my digression.

Many on the lists are people who merely sit with the elderly or ill person. That is a necessary service often times, but in our daughter’s situation, she needs care—not just someone to visit and serve as a companion or watch her sleep. But you cannot know what services a person is offering when all that is listed is a phone number. Some people do list one line of information about themselves in terms of their training and what services they offer. Those are the ones I called first.

People on the list are often now employed, and I am grateful for their sakes that they are. Many only have part-time jobs, however. If applicants want part-time jobs to coordinate with their child-care and homemaking duties, that is great. But most want more work; yet it is difficult to coordinate your needs with someone who already works MWF or from 9 a.m. to 1 p.m.

I think the majority of workers would like to work full-time for ordinary eight-hour shifts and be paid accordingly. Yet most people in need of a caregiver cannot afford to pay for even eight hour care, let alone the 24/7 care they may need—nor can the government agencies that help provide care. Consequently, these personal assistants and caregivers have great difficulty making a decent income.

I remember years ago when trying to help young mothers find work that many of them could only find restaurant work for two or three hours at a time and then have to drive back to work several hours later for another couple hours work during the supper rush. Driving to work twice instead of once a day ate up a lot of their income, and that was before gas was so high. These caregivers that I am calling often combine two or even three part-time jobs and, therefore, have these same gas concerns as they leave one home and hurry on to a second care-giving job in another town.

Often there is sadness in the voices of the women I call. (Most of the caregivers on the lists are women.) They need a job now because they have just lost their last job due to the death of the aged patient they had grown very fond of. Or they may be very aware that they will soon lose their client to death and consequently lose their income and ask me to call back later. There is no security in this line of work.

As wonderful as many caregivers are—and many are absolute saints—this seeking applicants for Katherine to interview has made me cynical. What many say they can do has no relation to what they really can. She has had some horrific experiences of being dropped, left hanging from a Hoyer, and other even worst offences.

I have been shocked at people who sounded as if they desperately want a job, and then that same person fails to show up for the interview appointment given them. Nor do they phone to cancel or explain. This has happened three times since Christmas. It is hard for me to realize someone could be that dishonest. The lack of consideration for my daughter’s time and efforts to get ready for the appointment makes me glad that person showed her true colors, however.

Suddenly right now Katherine does not need the care I have been busy phoning about. On Tuesday, David took her to an 8 a.m. appointment in Saint Louis with a Fellow working on a special Multiple Sclerosis study under Dr. Barbara Green with offices in the Barnes-Jewish Hospital complex. Unexpectedly, they asked Katherine to stay for tests and further consultation to see if they can stop the progression of this disease.

Today is Katherine’s birthday, and she spent it in the hospital keeping very busy with doctors and technicians in and out of her room all day. She missed the dozen roses her brother Gerry and wife Vickie sent to her home in Marion since they did not know she was in the hospital. Mary Ellen found out after she had ordered flowers to Katherine’s house, so she was able to change her order to Saint Louis. The best news today was that on Monday, she is going down the street to a rehab facility.

The Good News of Answered Prayer

Late this afternoon, Katherine received a call from her infectious disease doctor saying that after 48 hours the culture taken on Tuesday was clear. What a lovely Christmas present. She was trying to be prepared if necessary to do another round of infusions and continue in fear that this antibiotic might fail again. Instead of fear, there is celebration. If the next step of oral medication succeeds as hoped in preventing the return of this infection, which has weakened her and exacerbated the multiple sclerosis, we will really have cause for rejoicing.

Once again we feel the enormous respect and appreciation for the medical profession when it provides answers that not only prolong life but improve its quality. I pray regularly for medical researchers, because those in that profession are my heroes. I do not know their names, but I know their worth. I am also grateful for young junior and senior high school students who right now are studying and working hard to get the background needed to palliate illness and discover the treatments and cures for the diseases that destroy life and happiness. Anything we can do to advance science in our schools is a wise use of our tax dollars.

Perhaps almost as wonderful for her comfort as the doctor’s report was the find of her husband last night. David and I were surprised to bump into each other at Wal-Mart after he got off work and after I left Katherine’s house. Both of us were wandering all over that huge store that I usually avoid like a plague. (I get lost both inside the store and in the parking lot.) We were in search of jell or gell pads that Katherine had heard about. Neither of us was successful. (I had asked at least seven clerks but no one knew anything about jell except for shoe linings, which was not what we needed.)

We had to laugh since both of us had our shopping carts filled with possible devises that just might eliminate some of the pain that comes to anyone who must sit all day in a wheelchair. (I recently read where a nursing home let their workers volunteer to spend one day in a wheelchair, and these volunteers found out just how uncomfortable a chair was.)

David and I started showing each other our selections that might be experimented with in Katherine’s care. I had seen the pair of foot warmers David had, but didn’t even stop to look at them. I don’t even know what these warm cozy foot thingies are called, but both feet fit into this snuggling looking container for feet. Today Katherine had this invention on, and the heavy padding beneath her feet had reduced the pain from the hard foot rest. Gerald had long ago worked on the footrest with padding and helped, but the problem was still severe. Aides were placing comfort devices between her feet and the footrest, and fretting with her. But nothing really solved the problem.

Now not only were the soles of her feet protected, but somehow this device held her feet in place where they were not sliding off the footrest nor painfully grinding against each other. If it continues to work as successfully as it did today, this discovery is a minor miracle for both her comfort and for the workers trying to help her balance in her chair.

It has been a good day.

Between the Holidays

The snowman the kids built on the deck has melted away along with all the snow on the hillsides where the sledding took place. But the photographs and the memories still exist.
The Christmas tree lights are shining brightly, and I will continue to feast my eyes on them until after New Year’s Day. Christmas cards continue to dribble in, and I have more time to enjoy them than I did the earlier more numerous daily offerings.

Tired of left overs, tonight I fried the quail Gerry had put in our freezer some months back. With a can of biscuits along with quail gravy, supper was a success when Gerald got back from Cape where he had been shopping for a new front door.

Earlier he had taken his latest version of a wheelchair footrest pad to Katherine’s house and replaced the pre-Christmas one. I had not realized it was the new pad itself that prevented the footrest from being turned up when needed. (I thought the new leg pad prevented that and was, thus, left off.) The pre-Christmas one was definitely an improvement with air bubbles in the middle so Kate could not feel the metal edges with her feet. She had bragged so on the improvement on Christmas Day about the first one that I thought it was just the behind-her-legs pad that had yet to be improved.

But the material on the one Gerald finished today is made of a smoother material and had some feature to allow the footrest to be turned up as it is supposed to be when needed. Now he is going to make the pad behind her legs of the same smooth material. David and Gerald have both made pads in the past and tried various wrappings; and although they helped at the time, they would eventually wear out and the problem remained.

Multiple sclerosis makes every touch and every movement felt much more intensely and painfully than sensations feel for those of us who still have myelin protecting our nerves. A too hard touch or a heavy hand on a swollen ankle can cause harsh pain. A too gentle touch can cause a tickle that is maddening to the patient—and that can sometimes be helped by rubbing hard on the tickle. Pain is invisible and so is hard for the rest of us to even begin to fathom.

I don’t dare try to fathom it. In order to function, I have to not allow myself to empathize too much with that pain, but leg spasms are not invisible, and there is no ignoring them. Learning to break up a spasm is a challenging task since what works one time does not necessarily work the next time. The stiffness that can come in just a second is almost incredible even though you are witnessing it. Katherine had a Tysabri infusion at the hospital yesterday, so we are hoping she will in better shape by tomorrow. The day after the infusion is usually needed for rest. Katherine is my hero for the way she endures this imprisoning disease as cheerfully as she does.

We are following our kids’ and grandkids’ between-holidays activities with the comments and photos they put on Facebook. Soon the ones who traveled south will be coming back by the farm on their way home to work and their 2011 responsibilities. And later Leslie in northern Illinois will be coming south to return to her Tennessee campus.

Like the rest of the nation, I feel very bad for those who spent their holidays locked into airports without many comforts and missing out on their planned family visits and festivities. I feel concern for those still living and struggling on unplowed streets. I hope the sheer danger and difficulty they have lived through gives them the needed adrenaline and that the challenges give them the grit to recover and face the new year even stronger despite the terrible holiday disappointments.

Cold Rainy Days

The drive home from St. Joseph’s Hospital in Murphysboro to Marion last night was slow and difficult. By the time we left at the end of the day, it was high traffic time, and the cold all-day rain was falling harder. With some road construction adding to the visibility problems, I was very grateful when all were home safely. Gerald had brought the van over to drive Katherine home, but he ended up driving David’s car home and David brought Kate in the van. Katherine had been there all day for non-invasive same day surgery to try and break up a kidney stone.

It has been a busy week with Sam’s symphonic band concert on Monday night, which I knew Katherine would go to no matter what even though she had to be in Murphysboro early Tuesday. David has had a group from out-of-the country at the plant this week, so they came with him to cheer Sam on. Sam was one of the 7th graders who got to play with the symphonic band, and he wore his first tuxedo. The school issues them to the band members for the year, and students were so handsome. The girls wore matching black dresses, the director was in tails, and the concert was a lovely visual and listening success. We all headed to our homes to get as much sleep as possible before Tuesday’s early rising.

Despite general anesthesia, Katherine came out of the recovery room in what I thought was remarkable lucid and cheerful condition. But by the time we were ready to leave, she was in such pain that our leave taking was delayed by the strong pain pill she was given and she was out of it. So we found ourselves in the middle of those going home from work. Of course, Kate lives with pain with her severe multiple sclerosis, and the procedure of the sound waves just added to the misery she lives with.

I arrived back at their house just as Sam was dropped off by Josh’s family—the neighbors on the street behind their house. I had driven slowly and scared in that rain, but I still came a few minutes before Katherine and David because he had taken her by the Dairy Queen drive-in at her request. Except for hospital jello, she had not eaten since the night before.

As soon as Sam grabbed his basketball uniform for his church league practice, we were off for me to drop him at the junior high basketball game where the jazz band was to play at half time. Well, we were almost off that soon. In the hurry and excitement, somehow I dropped my cell phone and it flew under my car bouncing down the slanted parking area on the edge on the street and their lawn. I was on my hands and knees on the damp road and could not even see the phone. Sam quickly got the flashlight from the trunk and, on his hands and knees, found the phone clear over on his side of the car. Then we were off.

The plan was for David to pick him up from that gym and deliver him on to Sam’s church league team basketball practice. Fortunately, a friend brought him home after that. I’d come on back home to the farm, and Gerald and I had a bowl of the chili I had made on Monday.

Both of Katherine’s aides were sick again today, but David positioned her in bed before he left for work and the pain pill put her back to sleep. She was to phone her daddy when she woke up, but when she had not phoned by noon, I got nervous and drove in from the farm anyhow. She greeted me groggily and went right back to sleep. Gerald was in town, but she never called him. When the substitute aide came later in the afternoon, I eventually decided it might be good to wake her and introduce her to the new worker. She elected to stay in bed, however, until David came home from work lest the transfer to her chair be too difficult. I picked Sam up from his trombone lesson and fixed a couple of plates for the microwave before coming back to the farm.

When I walked into the kitchen, Gerald was busy putting up a shelf to hold the new television there, which is where I do most of my watching. Since our area newspaper carries little national news, I like to watch the news while cooking or cleaning up the kitchen.

We turned off the new TV and visited awhile as we ate left-over roast and veggies for our supper, and then I enjoyed the new TV while he watched downstairs in his comfy chair which often puts him asleep. Tonight he ended up playing with his camera and a flash he had had for a long time and never messed with. I have been so pleased that Gerald became involved with a photography hobby in retirement since it is good for him to have something to do inside the house. He is outside working most days and has projects going in his shop, but now he has an inside activity in addition to television and reading. He has done photos for two articles of mine, and that is another bonus for me. Since he is generous with prints, I am not the only one who appreciates his hobby.

Multiple Sclerosis

I believe in divine healing. I wonder if my prayers for healthy babies or traveling mercies have perhaps not only been answered positively but also prevented disasters and disabilities that I never even knew about. I certainly thank God for those answered prayers. I have often prayed for ill family and friends; and with time and often medical help, they have become well again. I would never want to neglect expressing my gratitude. But the miraculous instantaneous healing that I long to see is something I have never experienced. The dramatic stories both in the New Testament and in many anecdotal accounts thrill me, and I do believe. Yet I have no such story to share.

However, it has come to me that as marvelous it would be for my prayers for instant healing for a loved one to be answered, it would be even more marvelous for research to bring about medical miracles that would heal multitudes rather than just one person. So while I continue to pray that my daughter with multiple sclerosis will walk again, I also pray for researchers everywhere. Not just those researching MS and neurofibromatosis and cancer and the diseases of my loved ones, but all those diseases that beset the human race. And the great thing is that research in one medical area often benefits other areas just as space research benefited earthly projects.

So it was good today to read in the Sunday supplement magazine that after the appropriations to the National Institutes of Health (NIH) fell by almost 20% in the last five years, last winter Congress vote to raise NIH’s budget by 3.2% and the President has asked Congress to bring NIH’s budget to $31 billion for fiscal 2010. Other groups are working to bring the budget to $40 billion in the next five years. Arlen Specter is quoted as saying there are an estimated 110 million Americans who suffer from diseases such Parkinson’s, Alzheimer’s, diabetes, autism, and cancer.

Research is slow and often takes years before a definite safe and helpful treatment or cure can be found. (It took over 15 years for the development of Tysabri for MS, for example.) But research strikes me as one of the most effective preventive health care activities we can fund. What better way to spend out money?

Yesterday the regional chapter of the National Multiple Sclerosis Society sponsored a dinner and a report on MS research by Dr. Becky Parks of Washington University. I drove over to the banquet room in Carbondale to listen. It has long been reported that people south of the Mason-Dixon line are less likely to get MS than those in northern climes. It is thought that less sunshine has increased the risk of northerners. As we glanced at the material handed us and saw the first entry was on Vitamin D, I had to wonder since I know my daughter was outside often in the sunshine as a child. Across the table from me, a newly diagnosed young woman said she had always been a sun worshipper.

Nevertheless, experiments have shown that mice who are given large doses of vitamin D before being injected with agents that cause a mouse version of MS do not develop the disease. When treated with high vitamin D doses after getting the mouse version of MS, the disease is mild. (Since no one knows what causes MS, I wondered what the agents were that caused the mice to get their version of the disease.) People have concluded that vitamin D plays an important role in the immune system, specifically to help prevent inflammation. Continued research on low blood levels of vitamin D is continuing. But on a practical level, the advice is to be sure your doctor checks for vitamin D and if the level is low, take high doses to bring it up to help your immune system. Dr. Parks emphasized that just your ordinary across-the-counter vitamin D would not be strong enough to increase the deficiency.

Studies have shown that smokers have increased risk of MS and that smoking contributes to MS progression with more brain atrophy and MS lesions. Someone asked about second-hand smoke, and Dr. Parks said while no studies have been specifically done for that with MS, it was common sense from more general studies on second-hand smoke that it should be avoided.

While pregnancy seems to be beneficial to women with MS, they have often been torn about wanting to nurse their infants while also being encouraged to get back on their MS therapy quickly after childbirth to prevent relapse. Dr. Parks gave the good news that new research shows that women who exclusively breastfed their babies for at least two months had a lower risk of relapse during the year after childbirth than women who did not breastfeed—if they did not supplement the breastfeeding with formula.

To replace the daily or weekly shots that many MS patients give themselves, several oral medications are being studied: Cladribine, Fingolimod, BG-12 (dimethyl fumarate) , Teriflunomide, and Laquinimod. Infusion therapies being studied are for Campath (alemtuzumab) and Rituximab. All of these are mere treatment drugs and not preventative or curative. But I had to hope that knowledge gained from these drugs’ research would enlighten us as to cause and cure and later bring about methods for rebuilding of myelin and reversing disability.

I learned the difference between Phase II and Phase III trials. Phase II trials are for shorter times and with fewer patients. If comparison between those given the meds as opposed to the placebo, show good results, then with proper funding, Phase III trails may be begun with more participants and for longer periods of time. If those results are good, the studies can be submitted to the FDA for approval. As hopeful as Dr. Parks was able to be, she was also honest about the side-effects—sometimes life threatening with new drugs until proper doses and protocol are refined—and sometimes prohibitive for the drug’s use for some patients.

After the Q and A was over, people socialized a bit, and then those fortunate MS patients walked out with their limps and jagged walks and perhaps a cane or walker. Others left in their wheel chairs and scooters. I hope all of us left with a little more hope and with prayers for researchers everywhere and for increased funding for their work. We need to pray also for excellent science teachers who can help our high school and college students achieve the necessary academic ability to go into research. And the altruism to stick with it when the funding and interest are low.