John's Journal
Part 2 of Carolyn's Journal
1 October 1997 - The Move
Everything went well with the move to Lillian, Alabama. I have two weeks of leave to set up and get Carolyn enrolled with TRICARE. We were able to get a primary care manager with the internal medicine department. Carolyn's new doctor is very thorough. He establishes a care plan that isn't totally focused on the Huntington's but looks at Carolyn's needs also as a female. He prescribes several vitamins and a complete physical and mental workup. The doctor takes Carolyn off PROZAC because Carolyn thinks it's causing her to have anxiety attacks. The doctor puts Carolyn on Sertraline hydrochloride (Zoloft, Lustral) an antidepressant of the selective serotonin reuptake inhibitor (SSRI) class. Carolyn now has her own personal fitness trainer, a dietician, Neurologist, and Clinical Psychologist. We also have a request in for a care manager to handle all the appointments and keep the care plan focused. The Pensacola Naval Hospital, so far, is all we expected it to be and more. A great Day!
21 October 1997
Our first visit with the Neurologist goes well. The hospital has not received Carolyn's records from Atlanta so the doctor goes through the standard neurological tests. I think Carolyn enjoys the stick-out-your-tongue test the best! We are to come back next week and see the Neurologist after he gets all the test results from Emory.
22 October 1997
This is an interview I conducted with Carolyn so I would know more about how she is feeling after the change in medication and the visits with the care providers.
Question (Noel): “How are you feeling now?”
Answer (Carolyn): “I feel that the new anti depression medicine is not working like I want it to. It makes me think I feel the mental side of the HD more. I know it's the ZOLOF. When I quit the PROZAC before I could tell I was sharper. My brain was clearer. I want to try to reduce the amount.”
Question (Noel): “After finding out you were positive for HD, have you over come the feeling that you were exhibiting all the symptoms of the HD?”
Answer (Carolyn): “If the test result were only given to me as, "You have the gene and currently are not exhibiting symptoms". This would have been easier to take. I was told that I would have to reevaluate my life in two to three years and this was not what I expected to hear. This was the most upsetting part of hearing the results. I think if I get the antidepressant right I will go back to work a couple of days a week. Right now I don't feel I can work because I feel my sentence construction and conversation skills are not up to par.”
Question (Noel): “How is knowing the results of the test helping you?”
Answer (Carolyn): “I think it is easier to go on now.”
Question (Noel): “Why?”
Answer (Carolyn): “Now when I drop a glass I don't think it's here! Now I know, it is probably the HD. So I don't worry as much.”
Question (Noel): “How does knowing that you are positive make you feel toward others? Do you feel that it is unfair? Why me?”
Answer (Carolyn): “No, it was just a chance thing for me.”
Question (Noel): “How do you feel about our children's future now?”
Answer (Carolyn): “I feel optimistic. With all the new break through research I know it will be a short time until there is a treatment.”
Question (Noel): “How has the HD effected you relationship with me as your husband?”
Answer (Carolyn): “I don't think it has changed anything yet.”
Question (Noel): Yet?
Answer (Carolyn): “I'm sure it will if I develop severe symptoms.”
Question (Noel): “Don't you think I will be there for you?”
Answer (Carolyn): “I know you will be.”
Question (Noel): “Are comfortable with me asking these questions?”
Answer (Carolyn): “I feel fine, but have a bad cold right now.”
Question (Noel): “Can we continue with some more later?”
Answer (Carolyn): “Yes.”
5 November 1997
Today I came home to find Carolyn dressed up looking like the Carolyn I've known for the last 30 plus years. Hair, nails, clothes a total package, a picture of the executive assistant ready to tackle all assignments. What's going on I thought? I really expected her to tell me she had gone for a job interview. Carolyn responded that she had not taken any ZOLOF since last Friday and she thought she wouldn't unless I told her she needed it. Well I can see a change for the better right now. I told her we would give it a try and if I see the depression returning then I would tell her. Maybe now we are settled into a routine she can assume a somewhat normal life again. We have an appointment on 13 November with the clinical psychologist which has been one of the events making the depression come out. If we get through the session OK then maybe Carolyn can stay off the medication for now. I really hope this works out.
10 November 1997
Today Carolyn and I agree that maybe the PROZAC is needed. Carolyn says she feels the HD more and I see more movement than I've seen before. We wonder if the PROZAC helps to keep the movement under control by making everyday stress a little less stressful. Carolyn thinks that maybe 10mgs of PROZAC is all she needs at the present time. I encourage her to tell the doctor what she is telling me about how she feels off the ZOLOF and PROZAC. Carolyn says she doesn't what to take any more of the ZOLOF because it makes her feel the HD more. She says when she takes the ZOLOF she can't remember things as well as when she takes the PROZAC. Carolyn also says she wants to be able to have a glass of wine in the evening. Carolyn wants to go back to work. I tell her I will support her which ever direction she chooses. Carolyn needs order back in her like and I am going to give it to her if I can.
15 November 1997
The visit with the Staff Neurologist at the Naval Hospital goes well. Carolyn requests a return to the PROZAC (10mg) which seems to help her with the depression better than the ZOLOF. The doctor asks if we would consider going to the movement center at Bethesda Naval Hospital to establish a treatment protocol. Carolyn also gets an assignment to a clinical psychologist to help with the depression. When we get home we talk about how things are improving with Carolyn's treatment. We also talk about the possibility of the trip to Bethesda. Carolyn wants to drive to Birmingham to visit with her brother and sister-in-law for a week. I'm concerned about her making the drive herself. I'm trying not to over protect her. We talk about the trip and how she is feeling. I don't see anything that would stop her from making the trip herself. She says she wants to go so I give in. I ask her to take the cell phone. She will be gone for a week. It will be a long week.
20 November 1997
Carolyn is back from her trip! She made the trip OK and even stopped for a nice visit with my Mother and Dad along the way home. I guess I had to learn that Carolyn is still able to perform the same things she did before the positive test. We both had fallen into this mode where we were thinking, Carolyn may be HD positive to now Carolyn is HD positive she is sick and not able to function as well as before the test. This is counter productive for both of us. Sure Carolyn is showing some light signs of HD, but not to the extent she has to sit at home all the time. I have to adjust my thoughts and start helping Carolyn back to a level she is comfortable with.
12 December 1997
Carolyn went to her new Clinical Psychologist today. I was a very good visit. During the trip there we talked about what she was going to say. I told her just to say what was on her mind. When we got there the Doctor called her in and asked me to stay in the waiting room. I didn't like this but, I sat there and read a book for the next hour. I thought, “this is the first time I hadn't been with her during her doctor visits since the Emory trip.” I felt left out. Am I really thinking of her well being or just my own feelings? I'm not being fair to Carolyn. She needs this time with another woman, her doctor, to just talk about what she is feeling and express how she feels about our relationship, the children, and what is ahead. I'm OK again. Good here comes Carolyn, but she has been crying. I guess it wasn't good. We walked out to the car and I don't want to ask her straight out about the session. We drive home in silence at first then Carolyn starts to tell me about the doctor visit. She said” The doctor was able to get her to talk about what was bothering her and how she was feeling. The first thing the doctor did was change her medication from ZOLOF to PAXIL. The doctor said she wouldn't have prescribed the ZOLOF for her mild depression. Carolyn said she told the doctor that she wants to go back to work. The doctor did agree that a trail work period would be good. Carolyn said she was thinking more about the HD just sitting at home all day and getting out could be the best thing. The Doctor has set up several more visits. I think maybe this is going to help much more than I could any thing I could have done for her. Carolyn will open up to the doctor where she will not to me. I guess she is protecting me. She knows I would have been upset seeing her hurting. By the time we get home Carolyn has told me all about the doctor visit and seems in a much better mood. I'm not being left out after all. I'm still part of the process and I know this is another step in the right direction. It's also an important part of my training and acceptance by letting the care providers do their job.
23 December 1997
Today we received a packet from the National Institutes of Neurological Disorders and Stroke, Human Motor Control Clinic. Carolyn has an appointment for a Neurological evaluation on Feb 2, 1998. This is a direct follow on from our great experience with Carolyn's Neurologist at the Pensacola Naval Hospital. Today is also a plus day in that Carolyn has stopped taking the PAXIL and is doing fine. She said she feels better without any of the anxiety attacks she was having. She thinks that the PROZAC was the best thing she has tried so far. She said that when she returns to the Psychologist she will ask to return to the PROZAC. I guess it is still a test and trial treatment at this stage. I'm really glad that we are going through this now. I think that later she might have trouble telling the doctor how she is really feeling on these drugs. Carolyn is still planning on returning to work in January. I'm encouraging her to just find something she really likes to do and enjoy it. Since she is staying at home all day without some social stimulation, I think it is driving her a little crazy and adds to the depression. I pray that next year is the year that a viable treatment is forth coming and we can lock this disease down.
23 January 1998
Our trip to Washington DC and the National Institutes of Neurological Disorders and Stroke, Human Motor Control Clinic was very quick. The drive took about 18+ hours and we arrived a day early to give Carolyn time to rest before the BIG day. The first part of the day was checking in, and then it was on to a repeat of all those Neurological test Carolyn has come to love. After the testing phase the Neurologist presented her case to a neurological team. The Team leader asked Carolyn what she hoped to gain from her visit. Carolyn told them she hoped to be able to add to their data base of HD information and contribute in some way to the search for a treatment or cure. The Doctors ensured her they would forward their testing results and recommendations to her doctor at Pensacola NAS. The Neurologist asked Carolyn to return the next day to under go a screening with a speech pathologist and also to have ultrasound and an xray taken of her face and jaw. There weren't any problems found and no treatments recommended at this time. The Neurologist asked Carolyn if she would like to participate in a new testing procedure where they were sending electromagnetic waves through the brain. Carolyn agreed to go through this testing and her results will be added to their HD data base. The purpose of this test was to see how HD effects the normal flow of the electrons within the brain. There were electrodes placed on Carolyn's head at different positions and a small electrical current fired at different times. The results made her hand jump and this reaction time was recorded. All-in-all our trip to NIH was like the crest of a wave of our search for some magic treatment or cure. I'm not sure if Carolyn felt better or worst after the trip. I think it did make us realize that at the current time there isn't one treatment or process available that will help. We still think that there will be something soon. Research is moving forward at a very rapid pace.
12 May 1998
Now Carolyn and I feel we are past what we called the “death stage”. When we learned of the positive HD test we were in shock and moved to a “morning stage”. For me it was like loosing a loved one. Carolyn said she felt this way too. The realization that HD was now upon us has caused both of us to start finding HD in every slip, misstep, item dropped, or mispronounced word. We were finding HD in every thing Carolyn did. We ran through all the Doctors and health care services we could find. We would grab at anything or anyone who might offer a cure or treatment. Then Carolyn and I started to accept that things are not too different and she is still basically the same. Carolyn isn't wanting to take any type of medication that effects her perception of her being. She wants no PROZAC, no ZOLOF, no anything. Carolyn just wants to be her right now. She wants to feel the HD and know the difference between a PROZAC high and a hug high. I give a lot of hugs now. Carolyn hasn't presented any thing that requires drugs to alter her current mental state. We are finding more time together now to talk and walk together. Holding hands and walking on the beach is good for us both. We are not sure what this new stage is but I think it is acceptance and not defeat. I still look, read, educate, search, and above all else hope and pray. Let there be a treatment soon!
More to come.....................
Carolyn and HD
My lovely wife Carolyn is the one positive for Huntington's Disease. We wanted to document the initial discovery and battle with the Huntington's Disease dragon. We thought this might be helpful for those going through the initial discovery of being at risk and then deciding to seek genetic testing. This has been an on going project.
BIO Early Days
Carolyn was the girl next door. I knew her before she knew me. I had first seen her as she played at her grandmother's home and I was hiking by with a patrol of Boy Scouts. She was a striking beauty even at this early age. I think I was around 11 or 12 at the time which would have made her 9 or 10. I next saw her when her family moved into the same neighborhood just down the block and around the corner. I was still only a distant viewer and was much too shy to even speak to her. I had to walk by her house on my way to school so I caught a quick look at her now and then. Fate stepped in and her brother joined the Boy Scout troop I was in. He soon became a friend and I offered to help him work on his next rank, one task was cooking. Since he had to prepare a meal over an open fire and the troop didn't have a camping trip planned anytime soon, I suggested that he could do his cooking at home. I would come over and he could do all the things in his backyard. I went to his house at the scheduled time. I met his father, who I like right off the bat. He was very personable and I remember laughed a lot. I really liked him and he seemed to like me. Johnny, Carolyn's brother, soon had the fire going and prepared his meal. It passed my evaluation with flying colors as did his Mom and Dad. I soon feel into coming over at various time to talk with Carolyn's Dad, anytime I saw him outside. It was summer and I was around Carolyn's house quite often. I had met her and she knew who I was and even knew my name. I was getting braver and was toying with the thought of asking her to go to a movie with me. At this point I hadn't even talked to her other than to say Hi or some other as brilliant conversational snippet. I got up my nerve. I asked my Mother could she drive Carolyn and I to the Alabama theater to go see some movie that was playing. She said yes and wanted to know when. I stuttered around and told her I hadn't ask Carolyn yet but I would let her know as soon as I did. The thought never crossed my mind that Carolyn might say NO. The big day came when I saw her Father in the yard setting up a large wall tent they had to let it air out. Being the Boy Scout I offer to help him and soon was helping to sweep and cleaning it. I gathered all my nerve and just asked him out right, “Could Carolyn go to the movie with me? Quickly adding that my Mother would be driving us to the walk-in movie down town and I was paying” I also told him I hadn't asked Carolyn yet. He smiled and told me she would be glad to go with me and we set a date. I floated home even passing Carolyn as she walked home from playing tennis with her next door neighbor and best very best girl friend, Janis. I just nodded and said Hi and went home to tell my Mother I had a date! I have not idea what was said and to this day haven't asked but Carolyn did call me to say she would go but her best friend had to go too. I said sure, it was OK with me. What guy wouldn't want to walk into the theater with two good looking girls, one on each arm. Dream on!! The day came and Mother drove to Carolyn's home. Carolyn's mother came out and introduced herself as my dates got in the back seat together. I sat in the front seat next to Mom. Most of the ride was Mom talking with Carolyn and Janis. I was able to get in a few words now and then. We arrived at the theater and I bought the tickets and I think was also bought some drinks and popcorn. I sat on Carolyn's left side and Janis sat on the Carolyn's right. I did place my arm on the seat back behind Carolyn and and fantasized that I actually had it on her shoulder. My arm started to ache and then to get cramps, but I just gritted my teeth and kept it there, yes kept it there for the one and half hours of the movie. Never moving it or changing positions scared I would do something to make Carolyn mad. The movie ended and I was finally able to move my arm, now numb and tingling as the blood returned. We walked out and stood and waited until my Mom returned to drive us back home. I continued to hang around and more or less as an annoyance to Carolyn, who even though we had gone on a date, did her best to shoo me away. Time went on and I more less worked my way into her life. I started High School first, being two years older. Carolyn also picked the same High School to attend, but not on my account, but because her Mother had attended there. My next victory came when we both went to the same High School and both ended up in the marching band. Her Father, being the wise man he was, didn't want Carolyn to ride the band bus to the out of town games. When I found this out I asked if I could also ride to the games with them. And of course he allowed me to, how could he have refused such a fine young lad? And it wasn't like I was asking Carolyn for a date, just a ride with her Father to the games. Carolyn sat in the front seat with her Father and I sat in the back with the gear, but I was in the same car so we did talk and it was fun. The long and the short of it is we did get married and I was called into military service. I was sent to Port Hueneme, CA fro initial training in my rate with the Navy Construction Battalions. I sent for Carolyn and she rode the bus from Birmingham all the way out to California. She and I were finally a couple alone fro the first time without family around to catch us if we fell. We lived to good life on $78 military pay and Carolyn's $90 allotment. We rented a small one three room apartment outside the rear gate of the base. We walked everywhere we went, to buy food, go to the base library, or to the base movie. We always saved 25 cents so we could go to the movie once a month. I think we read every Science Fiction book in the base library. I managed to save enough to buy a small radio and we now had entertainment at home. We also were within walking distance of the beach and would enjoy sun bathing and no swimming because the water was so cold even in the summer. Those days were some of the best of our life. The time was drawing near to my deployment to Vietnam and Carolyn returned home, pregnant! She returned to live with her Grandmother and Grandfather until my return. I finally returned home greeted at the airport by Carolyn and a four month old baby boy. Our son was a pretty baby and I took great pride in taking him around to show of to my old buddies and friends. We returned to California as I served out my tour of active duty. We returned to Alabama and went about the process of setting up a home.
In the Mid 1970s we found out that Carolyn's Uncle, living in Chicago, has Huntington's Disease. Carolyn's father & mother seemed to be very distressed when they tried to talk to us about it, but we didn't see how it related to us. We passed it off as something bad but not something we had to worry about. We had another baby, Candace, and now were a foursome, two boys and two girls. I was more concerned with making a living and raising a family than learning more about HD. Carolyn went to work and was able to get into training to become a respiratory therapist. She is very happy and seems to enjoy working at the hospital very much. I'm proud of her accomplishments.
In the Late 1970s Carolyn's Aunt was placed in a nursing home with a possible diagnose of Huntington's Disease. I always thought she was a bit eccentric but otherwise seemed to be normal. Jeffery loved her and wanted to visit her. Carolyn's father didn't want us to see or visit her in the nursing home. We upheld his request and never saw her again. Because of this we never saw the effects of HD. Maybe if we had we would have known what Huntington's Disease looked like. Carolyn's Aunt die within a few months of Huntington's Disease complications. The HD was unverified but seemed to follow the HD symptoms. I don't think her death certificate listed HD but Carolyn's father thought that was what she had. In our youthful ignorance we still weren't overly concerned about the Huntington's Disease and what it means to our future. Carolyn's Grandfather passes away from a heart attack and we suffer our first immediate family loss.
Moving on to the Mid 1980s we tried to find out more about Huntington's Disease and what having it meant and how it would effect our family. There was very little information available and what little we could find seemed to consist of guesses with no information that was specific or very helpful to us.
In the late 1980s we had push Huntington's disease to the back burner as we both worked and raise our family with each pursuing our separate job goals. Our efforts were focused on the immediate future and school activities. Huntington's Disease is still there but it still doesn't seem to be anything we need to worry about.
Real tragedy strikes closer to home in 1983 when Carolyn's mother dies from Septic Shock after long stay in hospital. She had been on a long downward spiral after the loss of her Father, drugs, and I think the stress of early HD cognitive behavior of Carolyn's Father. Carolyn and the rest of her family are in shock. Carolyn's father is devastated and goes into a deep depression. When I look back at this time I remember seeing Carolyn's father showing possible signs of light Chorea and cognitive symptoms (head bob, unsteady gait, slight near-term memory loss) but really don't think of Huntington's as he also drank way too much. We passed it off as the alcohol or something older people get sometimes, but not something related to Huntington's Disease. Was the stress of the loss of Carolyn's mother the event that pushed the start button for the rapid onset of Huntington's Disease for Carolyn's Father? We still did not relate any symptoms to the Huntington's.
In 1984 Carolyn's father's depression was getting so server he had to be hospitalized. One of the standard treatments at this time for sever depression was electric shock treatment. Medication for depression wasn't very advanced and a second round of shock treatments was required. With each treatment he would loose his short term memory and would have to be told that his wife had passed away. One death of your spouse is bad enough but having to relive it again and again is unbelievable. Shortly after his release from the hospital Carolyn's father takes his life. Carolyn's brother is the one who finds him. The family requests a postmortem to verify if he had Huntington's Disease. The pathologist is able to verify the presents of Huntington's Disease. This is the first time we stare at the face of Huntington's and start to worry about Carolyn having HD. What would happen to our family? Looking back now at the tragic loss of both parents, I don't know how Carolyn, her Grandmother, brother or sister were able stand up under the stress as well as they did. Carolyn seemed to handle these events well but I know it is weighing heavy on her. There is also a feeling of guilt of our not being more attuned to what was happening. We start the “what if I had done this or only called more cycle”, but this only lasts for a short while as once again the daily routine of raising a family over shadows these events.
It's now the early 1990s and our personal life is taking a rapid acceleration. Our son gets married and there is a new baby. The stress builds again as we allow them to live in our home. Tensions mount between Carolyn and daughter-in-law. Carolyn is working very hard at her job and we both are stressed by having another family living in our home even though it's our Son's family. I'm starting to spend more and more time at work. Our quite time and privacy are now at a premium. I am feeling that I have already lost Carolyn to the HD. I can't really see any visible signs that I can say are HD nor can I tell by her actions. We must transfer to Mississippi leaving our Son behind to start his family and new life. For Carolyn this is a very stressful move as we leave our son and her friends behind. At this time I don't see how much HD has already started to take away. The stress is also affecting my mind. I think every time Carolyn drops something or accidentally spills something that HD has arrived. My job responsibilities increase and I dig into them becoming even more of a workaholic and maybe a alcoholic too. I am able to push the HD thoughts away as I concentrate more and more on work. Work become my safe place and a haven, an other life away from the HD. Our daughter is growing up so fast and I haven't even allowed my mind to accept that she and our son are both at risk. I begin to have trouble separating my HD thoughts from work or family life. How can I contemplate loosing our children to this disease. I now have three lives I'm living, one in which there is no HD, one in which there is HD, and one that is a waking nightmare that I stumble through not knowing which way to turn or how to find the answers. I'm walking a tightrope of reality. I can't seek help at work as this would spell the end of my military career. No one to turn to who would understand the hell that has become my day to day life. I know the strain of all this is affecting my thought processes. One slip and I fall into allowing HD to control us. I become someone else, someone living a life of suppressed reality. One in which reality often has fantasy woven through it. If I don't let the HD dominate me then I can move along living a normal life but that is not to be.
Another assignment puts us in Washington D.C. While stationed in Germany we become aware of the blood test for the DNA gene from Carolyn's brother Gene. Gene takes the blood test and finds out he is positive for the HD gene with a CAG of 19/42. This news has a great impact on Carolyn and she decides to seek testing upon return to the States.
In 1995 we returned to an assignment in the Brownsville, Texas area. The closest Army military hospital is 250 miles northwest At Fort Sam Houston. We delay our plan on the testing. I have been seeing what I think are signs of the Huntington's in Carolyn. I have noticed little changes in her. I guess the first changes I saw were after we returned from Germany. Carolyn's grandmother passed away. Her grandmother was very dear to her and she took the loss very hard. I also lost my younger sister to Leukemia a month after Carolyn's grandmother. This was a very hard time for us both. I saw Carolyn start to slip into depression. She tried to work, but soon gave it up as the pressure was making her depression worse. I also noticed she seemed to stop answering me when I asked her a question that required a quick response or contained multiple choices. I didn't really think about the Huntington's being the cause nor did we seek any medical help for the depression. Carolyn thought she could handle it by herself. I Find the St John's Hopkins List-server for HD and sign on. This is the first real HD information I've found.
In 15 December 1996 we are reassigned to First US Army headquarters at Fort Gillen outside of Atlanta, Georgia. This places us close to Emory and Carolyn decides to seek the HD testing.
It's time for another move when I learn on 15 January 1997 that due to the drawdown of the unit I'm working with we will be reassign to Mobile, Alabama with a report date of 15 October 1997. No surprises here. We have moved 31 times in 33 years of marriage. No stress here! Carolyn hasn't been to the doctor yet because TRICARE here will not see her because she has to withdraw from TRICARE in Texas first. Then she can be assigned to a care provider in Mobile. After several phone calls and faxes we finally get her removed from Texas TRICARE and enrolled in Mobile with TRICARE.
On 18 June 1997 Carolyn visits her new primary care provider one pickedfrom the Atlanta TRICARE care provider list. The doctor takes her history, family history, and agrees she should go to Emory for HD testing. He requests a referral from TRICARE for the testing. TRICARE denies the referral because CHAMPUS gideline will not allow gentic testing. The testing is only availble in cases of a pregant female over 35 who's baby is being tested for Down's Syndrome. TRICARE tells us they might cover the testing if it is deemed medically necessary.
So on 26 June 1997 we have the primary care doctor get a referral to Emory for an initial visit with their HD neurologist. Carolyn is very upset with the testing. She thinks she has failed all the testing. Not only has she done poorly on during the testing it is the first time she has seen people in all stages of HD up close and personal. There are several HD positive patients in the waiting area. All are in some advanced stage of the Huntington's. I talked with the families as Carolyn goes through the neurological testing. Upon her return she is very upset. We leave as I once again look around the waiting room. Is this Carolyn's future? We are scheduled a follow-on interview 18 July with the Clinical Psychologist prior to there being any drawing of blood for the DNA test.
The week of 26-29 June 1997 Carolyn is very depressed. I'm getting depressed! Carolyn needs help with her depression. I talk her into going to the doctor for help with the depression
30 June 1997 the doctor prescribes PROZAC. Carolyn seems to be doing better on the PROZAC.
On 7 July 1997 We have an appointment with the primary care provider he tells us he would not longer be seeing TRICARE or CHAMPUS patients. The reason given is because he didn't get paid as quick as he thought he should and there was too much paperwork. We once again start looking for a new doctor. We pick the next doctor from the list TRICARE provided.
On 8 July 1997 I call the new doctor for Carolyn's first visit. The doctor is able to see us on Tuesday night. That is great! We arrived at his after hours clinic and explained that Carolyn was in the process of getting tested for HD at Emory. The doctor said he will follow up on the referral from the other doctor. The doctor then conducted a routine exam to see if he sees signs of the HD. No, not HD, remember he is a regular MD not a specilist. He said he found blue rings in both of Carolyn's eyes thinks she may have Wilson's disease. OK so we ask what Wilson's Disease? He tells us it's a hereditary disease that causes copper to build up in the body causing HD like symptoms and other, if not treated,other nasty things. I'm in disbelief at this point. The Doctor orders blood work for Thursday morning at his day office. We are told to be sure to be there at 8:00AM and it's to be a fasting blood test so no food after 12:00PM. We go home in another state of shock. Now what?
Is the next day, 9 July 1997 and I'm looking through the internet for information about Wilson's disease. My main concern is can she have both diseases? Or has Wilson's replaced the HD?
It's now 10 July 1997 and because of a work schedule I'm not able to go to the 9:00AM appointment. Carolyn drives to the doctor's daytime office. They say they will not draw the blood because the day time office will not take TRICARE or CHAMPUS. I'm already on the phone with the local TRICARE office when Carolyn calls. Good timing. After I get the facts: (1) The TRICARE assigned doctor can only be seen at the after hours clinic between the hours of 5-9PM on Tuesday nights only. Not a good plan. So if you don't need a doctor any other time what do you do? (2) Carolyn is told to go to the after hours clinic. They are open at 2:00PM and will draw the blood. I'm still relaying this information to the TRICARE office. TRICARE say they are unaware of the doctor's after hours, Tuesday only policy. They suggests we change doctors. I say, we are in the middle of the testing for Wilson's and then a follow up at Emory for the HD. I say we will stick with this doctor right now until the test results are in.
It's now 1:30PM and Carolyn has arrived at the after hours clinic, still fasting. The Clinic doesn't open until 5:00PM. Carolyn talks to people who share the medical office and finds out they do not open at 2:00PM and they had a lab in the past but it closed. What no Lab? When the clinic personnel from the primary care doctor come in they tell Carolyn no one has given orders for any blood work. So Carolyn calls me again. She explains what is happening. There is silence, sobs, and sniffing. I tell her to sit tight I will be right there don't go anywhere. I call the doctor's day time office and am told they can't issue an order to draw the blood because TRICARE doesn't have Carolyn's new doctor in the computer yet and they will not issue a refferral. I once again call TRICARE and explain what's happening. TRICARE changes the entry date in the computer to cover the new doctor. I call the doctor's office and tell them she is now in the computer and the doctor is listed as Carolyn's new primary care provider. So administrative problems solved.
At 4:30PM I arrive at the after hours clinic. Carolyn hasn't eaten since the night before! The doctor's staff is starting to at the after hours clinic. We say we are here to have blood drawn for testing as ordered by the doctor. No one will draw the blood. I quickly call the doctor's day time office. I get the doctor's nurse on the line and she informs me the doctor had decided he will not be seeing any more TRICARE patients. I'm enraged, but able to control my temper. Carolyn is upset enough for the day. I take her to get some food before we return home. When we get home there is a message on the answering machine from the doctor's office telling us they will no longer be our primary care provider.
Having received this newest message at 5:30PM for the third time today I call TRICARE and explain what has happened. We pick another doctor off the TRICARE list. I called the doctor's office and get an appointment for 18 July. Hold on! Here we go again.
On 18 July 1997 we arrive at the new doctor's office with some concern and reservations, but try to not be overly concerned. The new doctor is an internist. He admits he hasn't seen a HD patient since his medical school days. We wait while he runs out of the room an gets his Physicians Desk Reference and return telling us only men get HD not women. CRAP!!! This is not a real good start. I update him with my limited HD knowledge of HD infomation and we both agree that Emory is the best place to get Carolyn the help she currently needs. He agrees to draw the blood that the prior doctor was going to and ordered a test for Wilson's Disease. He also schedules Carolyn for an eye exam and a visit with a neorologist. Glory be here is an honest doctor, he addmits he doesn't know all the answers. We leave his office feeling like maybe we are now getting somewhere.
On 22 July 1997 we see the ophthalmologist as scheduled and he finds nothing wrong with Carolyn's eyes. This the first good News! We then see the neorologist. He says he sees early signs of HD! This is bad News! We leave the office trying to comfort each other and start the denial phase. We rationalize that maybe we have influenced his diagnosis by giving him the family history. Maybe the things he thinks he is seeing in because Carolyn is under such great stress. Since we still don't have a blood test saying HD positive HD isn't real. We drive home talking around the results, still not wanting to put the HD label on Carolyn's exam.
On 24 July 1997 I start a quest for a change in the gentics testing policy at TRICARE/CHAMPUS. They don't want to authorized the test and I'm demanding they review their policies. Because of my insistance I am invited to attend a Beneficiary Focus Group meeeting at the TRICARE Atlanta Office. In attendance will be the Operations Officer from HUMANA (the HMO for TRICARE), the TRICARE coordinator from Ft Gordon, and and the TRICARE Oversight Officer from Eisenhower Army Medical center. The meeting is focused on how good this new TRICARE system is and how it is in it's early stages of development and that there are going to be some problems in getting the program staqrted. The HUMANA operation officer opens the floor for comments. I tell him that for my part this is the worst medical care I have ever seen or been involved with in my 33 years with the military health care system. I tell him I have never failed to get the proper care at a military clinic. I tell him I expect to get the same care throught this new system. I also tell them the government that hands me a gun and send me out to accomplish whatever mission is what I place my trust in. That I do my job without question, without fear, without worry that my family back home is getting the proper medical care and medical support they need. I tell him that I feel under the current situation, if deployed, I feel my judgment would not be at it's best if I have to worry about the health care my family is getting. I getting really mad and maybe a little agressive. At the end of the discussion one of the military officers asked to speak with me in private. He told me that there were funds for the testing Carolyn needed available. He siad that we might be able to get the testing done through Eisenhower Army Medical center. I thenk him and leave determined to find a better way. No one in the military should have to go through this. I don't think anyone in the civilian community would put up with all this confussion and just plain BS.
On 30 July 1997 we return to primary care doctor number three. How can we trust a system that has reassigned us to three primary care doctors in one week? It hasn't made us very trusting of this new TRICARE system. But back to the doctor's appoitment. The test results are in for the blood test. NO Wilson's diease is present. This is not good news because if it had been Wilson's it would have been treatable. The other blood work shows that Carolyn's other body functions are OK. The doctor has also received the clinical reports from the two neorologists. Both reports give a clinical diagnosis of Huntington's Disease. We are still in denial! We have known of the possibilities of getting a diagnosis of Huntington's and still don't want to accept it. Why can't I get my brain to work? I drive home in a fog as I keep seeking answers or try to make some plan to make this all change back to no HD. We finally arrive home and all I want to do is hold Carolyn close. I feel so helpless. I have always been able to fix things and protect my family. I've known Carolyn most of my life. I'm lost in the thoughts of the first time I saw her. She is so beautiful! Blond hair, green eyes, fair skin and thick ankles. I didn't like girls with skinny ankles. Don't know why but it was an important requirement. I hold her closer lost in memories.
On 1 August 1997 we go for our second visit with the Emory staff. Carolyn is in better this time as the Prozac gives her more control of emotions. She is able to talk a little more with the clinical psychologist. After several minutes the doctor agress to the blood test, but now it is to be a test comfirming the HD repeats not a predictive testing. Once again Carolyn is thrown into a deep depression. How can she keep going through this? Each time the HD hits her head on. We leave still in denial and talking about the possibility of a negitive blood testing. I think "but if it is negitive then what about the symptoms?"
4 August 1997 Carolyn is scheduled with our current primary care doctor for the doctor's lab to draw the blood. The test will be sent to a genitics lab in Tennessee. It will take about three weeks for the results. Carolyn goes to the doctor alone at her request. She wants to regain control of this situation. I think OK but the what can go wrong thought is in the back of my mind. At about 1:30PM I get a call from Carolyn and she says the lab has taken the blood, but is unable to ship it because of the UPS strike. They tell her they can only hold the blood one day. I quickly call Emory and am told the blood has to be at the lab within 24 hours and do not put the blood in the refrigerator. I call Carolyn back telling her what Emory said, she says they are keeping the blood in the refrigerator until we figure out what we are going to do. How did this het to be our decision? What happened to the process? Why is this happening? I tell Carolyn to go and get the blood from the lab we will send it to the testing lab. I call Emory and get the mailing address and race home calling FEDEX. They are not on strike. I ask if they can ship a blood sample today to Tennessee? I am told that if we can get to the shipping center before 5:30 PM they can get the sample out. So now it's 4:40PM and Carolyn and I drive in the rush hour Atlanta traffic to the FEDEX main shipping office next to the Atlanta airport. I find a place to park and wait in the long last minute shipment line. The time is ticking by way to fast. I finally get to the counter. I tell them I have a whole blood sample that has to ship out today. They tell me it has to be in their special HAZMAT shipping box. I say OK where do I get this shipping box. They tell me they don't have any of the HAZMAT boxes at the center and without the sample in the HAZMAT box they will not ship the sample. I leave their office passing the strikers in front of UPS. I am in control. I past them and try not to yell or hit anyone. I do give them an evil eye glare. I am a US Army soldier and can control my actions and handle the situation. I quickly develop a plan. I tell Carolyn to come with me we are going to drive to Tennessee tonight and be outside the door of the testing lab in the morning. I have full control of the situation. It is only about 250 miles. We can be there when they open in the morning. I drive away from the airport and reframe from running over the UPS picketers at the UPS shipping center next to the FEDEX center. I take the a back route home to avoid the freeway traffic. As I drive on this back street I realize we will pass a 24 hour post office. I pull in to the parking lot and we go inside and find a padded overnight shipping mailer and smoe bubble wrap. I build a shipping packet out of the box and bubble wrap and place the blood samples in a ziplock bag. I approach the counter, feeling like I committing the crime of the century. I ask "Can you please ship this tonight?" The clerk says it's too late to get on the overnight flight but it should be at the receipt address by the afternoon mail. I do some quick math and yes it's within the time limit. OK, lets ship it. I ask if they could please stamp it special handling. I don't want it to get crushed. It's a very special shipment. We leave, looking back over our shoulders to see if the FBI or Postal Inspectors have discovered our deception. The drive home is uneventful as we slowly recover from the days activities. Sleep comes late and I awake at 3:00AM. How long can this go on? The thoughts race through my head about the test result and the what they will mena to our future.
On 5 August 1997, the day the shipment is to arrive at the lab, I call after lunch and ask them to confirm the shipment has arrived and am told all is OK. No broken tubes of blood, no FBI, and no more stress until the test results are ready. I thank them. I will sleep this night.
On 6 August 1997 I receive a letter from HUMANA thanking me for participating in the Beneficiary Focus Group. They say that my candid comments and suggestions will only help them to improve their services for everyone. Well in all fairness I must say that Ms Sheila O'banion, Benefits Service Representative, at the Atlanta TRICARE service center did help us by ensuring that all our request for refferals were approved and the doctor's list was updated to review the list removing doctors not will to treat military under the TRICARE program.
On 31 August 1997 I got to thinking about this thing about TRICARE not covering Gentic testing. I drafted an email to the White House using one of President Clinton's speeches saying that the government would act to eliminate genitic discrimination. I took this to mean that the first place that should get in line with the President's policy should be the military health care system. I called for the military health care system to get in line with the President's policy. I addressed the spicific gentics testing issues and insurance concerns, and my own problems with the current TRICARE system. I guess I vented to the highest authority I could find. Who knows it might get results or get me an early retirement. I have tried to go through the system from the bottom up now lets see if top down works any better.
Today is 12 September 1997 and I received a letter from the White House. On White House letterhead. It told me that the President had signed into law the Kennedy-Kassebaum bill and all about it's benifits to the genitics research community. It seened to be just what was needed. It was signed by Hillary Clinton and yes I know it was possibly a form letter. But someone reads the email. I'm not sure if this will help with the TRICARE genitics testing situation.
I called to see if the results of the blood test were in at the Emory HD clinic. I'm told the results have just arrived and could we please come in on the 19th? I ask the nurse if Carolyn's PROZAC could be making the effects of the Huntington's more pronounced? Maybe, was the reply. Now I know! The test is positive. Why did I do that? I now have to hide what I think I know from Carolyn. I just tell her we are scheduled to go to Emory on the 19th for the test results. Carolyn later told me she could tell I already knew the results from the phone call. I can't play poker either I guess my face told all.
Is now 15 September 1997 and I receive an email from John H. Varga, M.D., F.A.C.S., Commander, Medical Corps, ,U.S. Navy, TRICARE Medical Director, ,Room 1B657, Pentagon. The contents read:
19 September 1997 Todays the day. We get ready for the trip to Emory for the results of the HD gentics test. Carolyn seems to be in control, maybe a little better than I am. After all she has the PROZAC. We drive along ensuring each other that the test will be negitive, but if it isn't, it's not the end of the world, they are making great strides in research. A treatment can't be more than a few years away. Not very reassuringly as we try to fool and protect each others feelings. We arrive at the clinic. Carolyn sits down in the same chair she used each visit and waits for what she knows is coming. The doctor hands me the typed results and tells Carolyn it wasn't what we wanted to hear. I read the results. CAGs are 19/42. HD positive! Carolyn can't control any longer. Tears come. I hold back not wanting to make it worse. The doctor asks if we have any questions. We think we already know most of what is coming, but there are still unasked and unanswered questions.
So many questions, too many questions for the few minutes we have. Carolyn asks, How long before I can't work or drive? The doctor tells her that it would be good to reevaluate in two to three years and that she should not get a job at the front counter working directly with customers. That she should try to get a low stress or no stress job. You need to look at how you are functioning and make the decision about driving. I see Carolyn's shoulders drop, head down she has no more questions. We leave and I thank the Doctor for her candor. Carolyn quickly moves to the restroom to fix her makeup. She always has to look good and I know she wants to fix the tear paths going down each cheek outlined by the eye liner. I wait outside the restroom not knowing if I should get someone to look in on her. She is alone. I can't hold her in these first few minutes of knowing the beast is finally here. I can't drive away the enemy after I've trained all these years to fight and win. I'm useless right now. I can only wait. I pace the hall. I'm going in there, womens restroom or not. Just then Carolyn comes out, once again in control. Not a hair out of place, make up correct, posture proud and erect. I can only marvel at her ability to deal with this. I've seen grown men in combat huging the bottom of a fighting hole crying, useless, curled into fetal positions, by the fear of the unknown. I know I've just seen true courage as Carolyn walks beside me and asks if I'm alright. Hand-in-hand we walk to the car. This will not be the end and this HD beast will not defeat us. We are stronger together.
15 September 1997 Just got an email from John H. Varga, M.D., F.A.C.S., Commander, Medical Corps, ,U.S. Navy, TRICARE Medical Director, ,Room 1B657, Pentagon. Content follows:
CW3 Crowson:
I have recieved your email via the White House and would like to discuss the issue with you and a possible solution. I cannot find your phone number in the email. Please call me at the number below, leave a message if I am not in. I will return your call.
We can probably get the testing performed via the Eisenhower Army Medical center in Augusta, GA. You could either have your wife evaluated there or have the specimen sent to them for testing.
We are working on changing the CHAMPUS/Ticare policy you cited, as this has surfaced in another case recently.
Look forward to hearing from you and working out a solution.
Jack
Will I call him back? My thoughts at the moment were have I gone too far? Is my militray career over? Should I just call and leave a message and say it's a mistake? No, I started this for Carolyn and all the others out there going through the same thing. There is no time for fear! Call now! I phone Doctor Varga who is very nice and had several helpful suggestion but did say I should have gone up through the military system. I expressed my concern that the system was not responding and that the many road blocks had driven me to seek another route. Well I count this as a good day.
More to follow
About HD, Hope, and Love
I picked a huge topic to blog about, there as so many different areas, emotions, concerns, facts, fiction, hope, faith, love, anger, sorry, happiness, depression, anxiety, that are HD. The disease is now more or less a known process. The gene which causes the repeats has been identified. There is also an understanding of some of the mechanics that cause cell death. The researchers have been able to delay and increase the life spans of HD Mice. We read almost daily about HD labs making great leaps forward in their study and research for a treatmant and cure.
I remember when it seemed we woud never move forward in getting even having the possibility of a treatment or cure. As new drugs were identified we have conducted our on assesments and watched with great hope for the outcome of the trials. We realized for us that the basics of life were what we had to work with. Staying as healthy as possible and following a proper diet. I know that other factors are at work but it made sense to us that daily exercise, no mattrer how brief, gets the body working. The simple but complex processes that make us function seems to play such a big role in how HD was effecting my wife. Getting the heart rate up, moving more air through the lungs, moving food through the digestive system, all the basic things. We believe have really helped us push the HD onset back. One of the most important things is having a good support group around you to help with keeping the mind active and healthy and keep the social system in place. My wife has often said she didn't want to go to one more doctor because they all made her stick out her tounge, watch the pen light or walk up and down the hallway. She said that it made her feel sick if we were always going to the doctor for the HD when they can't really do anything if there aren't any symptoms to treat. Duh, that makes sense! Why make a situation worse? We decided to notbe in denial, but keep aware and only seek treatment for the treatable things. If it isn't broken don't try to fix it.
My wife was dignosed in 1992 with a repeat of 19/42 so we knew we were on the low end of the HD scale, but we also knew that statics are not for the individual but for a group. We all have read about HD positives who have less repeats and have moved rather rapidly through the stages of HD or have not shown any signs until well late in life. I'm sure some may have lost hope and let the disease take them along a quicker path. Others have made the choice to fight every step of the way. We are with the latter group. We, and I mean both of us, are fighting every step of the way. Our plan was that if there is a loss in one area we will find a new area to take over. A task that becomes too had or undoable is replaced with another task or at least another path or way to accomplish the orginal task. I'm always trying to find the things that make my wife's life eaiser, but at the same time making sure there is an achievable goal established. If loading the dish washer is becoming too hard then make one of the steps the goal. Clearing the table or stacking the plates, what ever it is lets her have an active role and some control of her life. Am I setting us up for a fall? No, I don't think so. Making the big steps into little steps allow accomplishment and a fairly normal life.
My wife and I have had many, many talks about the HD, our family, the future, and all those thousands of little details that make us who we are. We draw from each other, because one is not whole without the other. I know she takes what she needs in a way that makes her stronger. I take as much of her pain and fears as I can to help make her whole. We are moving on at a slower pace now that I'm retired and we have lots of just sitting time to draw on each other, recharge, and enjoy the moment. We have been together as husband and wife for the last 43 years and have know each other years before we were married. If there is one thing I know is that she and I will always be together. I have no doubt that the road is getting harder each day and at some point it will turn into a very rocky road but I'll be there to keep the days as loving as possible and to provide as much comfort and happiness as I can.
How can a house built on love not stand, how can a relationship built on love not survive, how can there not be hope, how can there ever be a day that isn't a joy in just knowing that we have lived this life so well. Our strength is in our faith and our love. Our future is built on hope for a cure for HD, a cure for our children and grandchildren and hope for every one of those who suffer from HD, their families and friends.
As I write this I'm smiling as I look at the light of my love, my heart, my being, my wife, Carolyn.