Tuesday, March 22, 2011


October 1999, our family went on our annual trip to see my dad in Arkansas. Each year since our children were babies, we drove 400 miles to see the changing of the leaves. We would visit my dad and stay with him and take day trips to the nearby Ozark Mountains. We hiked trails, visited waterfalls, took scenic drives and watched as our children discovered scenic vistas.

Dear Hubby had been struggling with fatigue and seemed to have some issues with his knee. The previous year, on our annual trip, he'd barely made the mile and a half "hike" (which was more of a walk on even trails) called Lover's Leap. Toward the end of the trail there was a natural staircase composed of huge boulders. Our tiny three year old was strapped onto Dear Hubby's back and I watched at the bottom of the staircase with the other three children and watched him wave back and forth. He seemed unsteady and terribly weak. It scared me. I took our baby girl from him, strapped her on my back and all of us helped Dear Hubby off the trail. We finally made it back to the vehicle. I questioned him asking, What was that all about? He had no answers and just said, I don't know what's up, I'm just so weak. That was also the trip where he fell while walking along a rocky river bank. Strange.

So in 1999, we were determined to still make our annual trip, but instead of our usual hikes, we were focusing on scenic drives. We had learned to adapt to this weird weakness. Dear Hubby was still able to do a tiny bit of walking, as long as he had places to rest. As we drove through the mountains, we spotted a new state park we'd never seen, and we decided to check it out. We drove around inside the park, and one of the kids spotted a sign for a trail to the "natural bridge". We discussed what that meant, and they wanted to see it. Upon closer inspection, the "hike" to the natural bridge was just 1/3 of a mile. This trail was handicapped accessible, wide paths, paved with peat gravel. It seemed pretty easy and Dear Hubby said he would try. We started on the trail, and watched in horror as he moved from tree to tree, leaning on each one for support. Still within sight of the vehicle but still on the trail, there was a bench and he threw himself on it. He couldn't do it. He couldn't make the 1/3 of a mile trek to the natural bridge. He suggested that me and the kids go ahead, see the natural bridge and return. He would wait there. I told the family, No, if dad can't go, let's not do it. This is a family vacation.

What I didn't say was that I was terrified. Something was seriously wrong with my 38 year old husband. We got back in the vehicle and drove back to dad's. The rest of the trip, we drove scenic drives and didn't talk about what had happened.

I came home and got on the computer, searched in the internet and found very, very little medical information. Remember in 1999, the internet wasn't anything like it is today. I took an afternoon and visited our local library. I sat down with medical reference books. I couldn't check them out, so I sat and read in our library. I followed the information, and very quickly discovered that all of my Dear Hubby's "issues" seemed to be neurological. Searching through illnesses and diseases that cause neurological symptoms, I narrowed it down to one disease. And, I as read, I saw my husband in that book. Things began to make sense. Things we'd never related to his "weakness". The eye trouble, the weakness, the bladder issues, the uncoordinated movements, everything.

The Monster began to emerge from the hazy fog, and it had a name. Multiple Sclerosis.

I knew then, that my sweet husband, who had been ignoring my advice to see a Dr. HAD to make an appointment immediately. I went home, and shared my findings. I told my sweet husband that I thought he had MS. I shared with him all the signs and symptoms. We discussed it and he agreed. It sounded very much like MS.

The feeling that day? I felt good in finding out there was a name to this Monster. Over the next few days, the realization sunk in. I knew that MS wouldn't kill my sweet husband, but I began to think back over what I'd read. Progression. No cure. Disabling. I began to put pressure on him to go to the Dr. He refused. Why should he? He knew what it was now. What more could a Dr. tell him? Was there a cure? No. Then why bother?

Over the next few months, we had many "discussions" about this. I nagged and cried, I worried and fretted. Finally, in March of 2000, we got the official diagnosis.

This month marks 11 years since that day we sat in the doctors office and were told that MS was probable. No one wants to say it right away. Although, by the time we saw the doctor, my sweet husband was already very progressed. He had lost muscle mass in his back, arms, legs, shoulders. A trained eye could see what we had overlooked for so long.

This morning we were talking about his diagnosis. I asked him if he could remember what he was feeling that day. He said remembered feeling just fine. He thought to himself, hey it's MS. We know what it is. If this is as bad as it gets, I can handle it.

I suppose, since the doctor hadn't made a firm diagnosis, he didn't go into what lay ahead for my hubby. He referred us to a neurologist and wanted hubby to get an MRI and a spinal tap for a firm diagnosis. But we all knew the truth.

What I felt, I really didn't discuss much. It takes time for all of us to process the information. I assumed that my hubby knew what a diagnosis of MS meant. I did. I had read it all. I knew. And, maybe that is why I panicked. I thought he knew. He was handling it well. But he didn't know the entire truth.

This is National Multiple Sclerosis Awareness Week.

Here is what I put on Facebook this week:

A lot of people do not understand MS and what it does. Please visit the National MS Society website and read about MS. There are different types, and Forrest now has a progressive form of MS.

I am putting this out there for information purposes. It is important to me that you, my friends, know and understand MS so that you can donate to help find a cure.

Any cure that is found now will not help my husband. He has permanent damage to his central nervous system. My hope and prayer is that no one else would ever have to experience what he and we have experienced.

Forrest was diagnosed 11 years ago, and we've had to watch as MS has taken his abilities to do everything. He is now in bed all but about 3-4 hours a week. MS is a progressive, debilitating disease.

Imagine your strong, capable husband declining day by day. Imagine him going from caring for you and your family, to you and your children caring for him, taking care of his most basic needs. It affects every area of his life.

Imagine not being able to leave your house because you are too weak to sit in a wheel chair. Imagine not being able to get yourself a glass of water, not being able to walk across the room and hug your child or wife.

Imagine being so weak that you cannot lift a glass of water or move your legs in bed. Imagine being so weak and uncoordinated that you cannot dress yourself, comb your hair or brush your teeth. Imagine your thinking being so foggy that you cannot think of the word you want to say. Imagine not being able to breathe if you laugh. Imagine crying or laughing uncontrollably and without reason.

There are many other issues and body systems that are damaged and do not function normally for Forrest. MS will not kill those affected by it. It just lingers and robs.

Please donate to find a cure. Please help stop MS. And, for Forrest, please pray. Unless God chooses to heal Forrest, he will continue to decline. We believe in the power of prayer, and we know that God can heal him if He so chooses.

Forrest is such a blessing to us. His attitude and spirit are so sweet. He encourages everyone he speaks with and we are grateful that God has allowed our lives to be touched by his

1 comment:

Madge said...

You, your husband and your family are in my thoughts and prayers. May your Faith in God bring you continued strength.