Personal Story of Susanne Waite

Terry Waite and I have been married for over 15 years.  I was 20 when we married (he was 28).  We loved to hike, bike, rollerblade, jetski, play softball, bowl, walk the shopping malls, just to go... go... go... 

About 10 years ago, Terry did not want to rollerblade, hike, bike or do a lot of the other things that we used to do.  I thought he was being lazy, getting out of shape or just did not want to hang out with the friends we shared these activities with.  I was frustrated with Terry and did not know the true reason why he did not want to do anything... Until 6 years ago, when he was misdiagnosed with GSD, Glycogen Storage Deficit.  At that point, we did research to find out what GSD was all about and were hopeful that a high protein diet would help alleviate some of the muscle atrophy.  But Terry's symptoms did not match up perfectly, so we kept researching and pushing his doctors to look into this further.  Which they did.

After a muscle biopsy, UCLA gave Terry a diagnosis of SMA Type III.  This was disappointing as SMA III had no cure or any type of treatment.  Terry was told not to exercise - as the more he exercised the more his muscles would waste and he could not rebuild them.  I was 27 years old at the time (Terry was 35).  I did not know how to deal with this at first.  This came as a total surprise to us as nobody in Terry's family had any symptoms or knowledge of a family history of SMA. The doctors' lack of information really left us at a loss and made us feel so alone.  At first I denied anything was really happening.  I carried on, diving into my work as a Marketing Representative and ignored the diagnosis.  (After all, at the time, Terry was still walking fine.)  About 5 weeks later, I broke down.  No matter what I tried to do, I could not stop crying.  I cried on and off for a full week.

Eventually, after Terry researched SMA III, he again determined he had an incorrect diagnosis and went back again to the neurologist.  The neurologist told him it would be a long shot, but he'd try the DNA blood test for SBMA.  It came back positive.  Terry finally had the correct diagnosis where his symptoms matched.  However, we were told that SBMA is extremely rare (supposedly no more than 50 families worldwide) and that they had no idea how quickly the muscle atrophy would progress.  This was very frustrating.  We had no idea how long Terry was expected to live and to what extent his lifestyle would be limited.  

Terry immediately began searching the internet for information.  We were not surprised to find there was no organization supporting SBMA since we were told it was so rare.  Terry collected a few articles posted on the Net and this is when he put up his first Web site in the hopes of helping others, as well as contacting and sharing information with others. Terry's talking to others was a tremendous help to us. To our relief we found others in their 50's and 60's still walking with the use of a cane.  We eventually found out that Kennedy's Disease is not life threatening and that life expectancy is well into the 70's.  This helped to alleviate a lot of my fears.  However, it was not easy for me to accept this new addition to our lives.  We talked about taking the Web site a step further by actually forming a non-profit organization, but both of us worked full-time (and I was going to college at night).  There just wasn't time and we did not feel there were enough people to support it at the time.

During the time Terry's personal Web site was up, I mostly remained in the background.  I refused to talk with other spouses or girlfriends.  I could not talk about Terry, SBMA or how I was feeling without starting to cry.  I also did not know how to help others or give counsel when I myself did not know how to handle my own feelings yet. Perhaps if I had talked with them earlier on I would have accepted the situation sooner than I did.  

When Terry was first diagnosed, he was concerned that I may want out of our marriage.  I never really thought about that.  We did marry for "better or worse" and of course, I love him.  I told him that if he can be strong, I can be.  I cannot see us sitting around, pitying ourselves for the rest of our lives.  We make a lot of jokes about the situation and get really great parking at the mall around Christmas time!  We try to stay positive (although at times we must allow ourselves to express our deepest emotions.)  We try not to ask God, "Why us?"  Instead we ask God to help us accept it and pray for cures or treatments for all those in the world with any illness or disease.

In June of 2000, we went to the Families of SMA Annual Conference in St. Louis.  I did not really want to go.  I did not know what to expect or how my emotions might surface at the conference.  (I had read the FSMA newsletters in which they announce children with SMA Types I or II that have passed away.)  I was concerned I would become extremely emotional  at the conference.  However, once there, I realized I was focusing on the negatives and not the positives.  The children had a great time running around in their wheelchairs and it was great to meet other adults in person who faced the same challenges we do. 

We made some great friends and the FSMA Conference became the springing board for Terry and I to start a non-profit organization for Kennedy's Disease.  I realized how much an organization was needed for support, research, fundraising and awareness building.  Most of those who live with Kennedy's that we have met (either at the conference or through this Web site) have been misdiagnosed at least 2 times.  Most of those misdiagnosis' were ALS.  (Another neurological disease, but sadly it is fatal.)  We met a gentleman who was misdiagnosed with MS for 11 years and had been treated with chemicals for MS for all those years to recently find out its not, its Kennedy's Disease.  No one should have to go through a misdiagnosis.  A simple blood test can diagnose Kennedy's Disease now.  We need to educate Neurologists to perform this blood test before diagnosing ALS.  It should be standard protocol for them before releasing an ALS diagnosis.

There came a point when Terry and I stopped doing anything.  He could not walk for more than a few hundred feet without overdoing it (and experiencing pain the next day) and he fought the idea of using a wheelchair.  We started to just hang out at home.  I have to say, I was extremely bored.  When Terry finally began to use the manual wheelchair, I felt liberated and free!  We were going to the shopping malls again and went to the L.A. County Fair, Disneyland, just plain out and about again!  It felt a bit awkward at first.  I think Terry has done a much better job at dealing with all of this.

Terry's arms started to weaken about a year after using the manual wheelchair and after a huge fight with the HMO company (and a surprisingly easy negotiation with his employer to help with the cost of a power lift seat) he now has an electric chair.  The electric chair has been great.  I appreciate the fact that the speed of the chair allows Terry to easily keep up with me, even if I decide to go out for a jog!

I have had to take on doing more and more around the house as Terry notices more atrophy and weakness (in his arms now as well.)  I am now more involved in the maintenance of our house, such as painting or mowing the lawn.  When Terry or I cannot do something, we are fortunate to have family to help or to be able to hire someone to help out.  However, there has not been too many things that I cannot do without Terry's direction.  Its worked out well so far.

In June 2001, we went to the Families of SMA conference again.  Although this time, we were able to meet 18 others who attended that are living with Kennedy's Disease.  It felt like family and hopefully we will be able to do this again next year.  Dr. Fischbeck and Dr. Merry were both at the conference and gave us an update on research for Kennedy's Disease.  Again, great hope for a cure or treatment has been rekindled!  Please click here to see the 2001 conference page.

Terry and I have our moments.  However, for the most part, we're adjusting to living with SBMA in our lives.  We truly appreciate all of those who have taken the time to e-mail or call us to share information.  We also appreciate our friends and family who remain positive forces in our lives.

Photo Website:  www.sierravistastudios.com