They are gone

Stephen and family arrive on Friday afternoon . They left this morning. I must say it does change our house . Me, Vickie and the old tom cat have set routines not much excitement. The addition of five new bodies in the house is an adjustment for us. On Friday after a short visit we were off to pizza hut for dinner.We came back and got the boys settle for the night . The princess was awake and having a good time . I don't think i have ever seen a baby so happy. She should be walking by the time we see her again in about three weeks.
On Saturday after breakfast me and the boys rode down to the club to tell the guys no golf for me and show off the boys. We came back for a one on one football match with me as the ref. After a little golf carting , it was time for fishing . We chose the back yard pond and after about 30 minutes Marshall landed a nice two pond large mouth bass . He was a happy boy , but i could not get him to hold his catch, so i took the picture with the fish on the ground. The fish was returned to the pond. At that point Tim gave up and sat on the bench with VJ and played video games.
After lunch we drove to Angier to spend the afternoon with MOM. Stephen & Melissa meet us there, they had been out to look at the new school and ride Thur a few housing developments. We had a great afternoon and a wonderful dinner. After KP duty back home . SJ&MJ with the princess when out for a while. The boy were tired and went to bed , no problem.
We had a big breakfast and they are on the way home.
Great weekend , but it sure is a change for us. We will look forward to seeing them again on the 20Th of December.
The kid are all different , Marshall can be quite mature for 9. Tim is a typical 5 and Hannah is so happy always smiling . I showed Marshall a picture of me and my brothers and Marshall (sr) when I was about his age and ask him do you know who those people are . He point to me in the picture and said i know that is my Dad and pointed to Marshall and ask is that papa Sammy. Stephen i had a good chuckle .

I Stop by for a short visit with Nell and thanks her for that HD gift and for getting me started on this little writing experiment . She is doing well extend an invitation to her Xmas party.
Great weekend it is going to be warm and sunny this afternoon , so i think a little golf is in order.

Black Friday

The stores at the shopping mall open at midnight in some cases , i can not think of any thing i need and most especiallly any thing i would need to line up at a shopping mall in the midle of the night to buy. I can remember as a much younger man being out in the middle of the night shopping , but not for shoes.
Yesterday we had a nice lunch at the K&W and returned to shirley house and had a very nice visit , untill one of the kid got hit in the mouth with a ball and had to leave for the ED. Vickie and i remembered many years ago on thanksgiving at my MOM's house we sent two to the ED for injurys as the result of lawn football.(i was one of the two)
The brother inlaw who had the spot on his lung does not have cancer. He has holes in his lungs which is not as bad. The folks in greensville told him they could help him if he would stop smoking. He was still puffing yesterday.
My walk was interupted by a doctor who lives down the street and wanted to discusse his firms relationship with the hospital . He is a great guy and good MD. He thinks the 30 years relationship should trump any short comming in the exiting contract .
Stephen and family are coming today for a short stay, i am looking forward to seeing all of them. Spoke to Bryan also he is in much better sprits.

Thanksgiving

I am thankful this morning for the many fine things that make my life meaningful. My wife is doing well and we are off to visit her family to share a holiday meal. I spoke to my mother this morning , she is up and moving and plans to share the holiday meal with one of her sisters. When Vickie was driving we would go our separtate ways on thanksgiving , but now we alternate and it the year to go east.
I am thankful i still have one brother who is health and doing well . I don't see him as much as i should ,but i plan to change that. I am have two fine sons and 4 grandchildren. All are health and doing well . I am hopping Stephen and family will move closer in the next few months.Vickie's mom is also doing well at 89 lives on her own and still goes to church several time per week .
I have a few folk i count as friends and they to are doing well.
My life since retirement has been full and while there will always be a bump or two, I am happy with were i am and what i am doing.
Yesterday i had lunch with a friend and dinner out with VJ.
Life is good.

Visit with a friend

I had lunch today with a friend to discuss fundraising for the COE and a general visit. He is the person who insisted vickie see a neurologist after she totaled the BMW.He is also the one who attenpted to help us find a consular who had HD experience, without success.
He said while in medical school all residents were told there was a patient in the hospital with a rare disease ,Huntington's. There was a call meeting for all to see this patient who was on a stage in a chair. He said he didn't expect he would ever see a another HD patient.
He told me today he had a patient in his office recently who he had seen before. He ask the patient if he had ever talked to anyone about his movements, his wife spoke up and said no one had ever brought it up and she thanked DR K for doing so. The patient was referred and found to have HD.I am convinced there is much more HD out there than we think.
Listen to the radio this afternoon and heard a guy commit professional suicide, it was sad to hear. Smart Guy , but it sounds to me like he is looking into the abyss and this was a desperate cry for , I don't know what .
Out to dinner with the wife.

Back to Raleigh

We returned to Raleigh yesterday so Vickie could return a pair of trousers she purchased on Saturday . She got up and said she want to go and it was something she want to do ASAP. It was better to get it behind us vs letting it become an issue. She was in and out in 30 minute , i waited in the car with a book and it worked out just fine.
Rained most of the morning , the lake is overflowing and the low areas are flooded.It is supposed to stop raining today .
I am not going to play golf in the mud, that what great about retirement , i can play on my schedule .

The hospital saga moves on , ego still rule the day . For the most part i think the doctors and the administration see the hospital board as a inconvenience except when they need cover or want support for one of there issues . The board allows this by our own actions or inaction .
Time for a walk!

Dinner out with my wife

Vickie and I drove over to the big city yesterday afternoon for dinner and a little shopping trip for her . She has a renewed interest in shopping , and getting nice things to wear for the holiday season. She had a closet full of very nice clothes , but she want to pick up a few other thing , which she has been doing over the past few weeks. I take this as good sign , last year she had no interest in the parties or dressing for them . May be it has something to to do with the medication change ??
We had dinner at 42ed street oyster bar and the oysters were outstanding .The rest of the food was OK. Back home early , a little TV & reading before bed.
Good day on the golf course won $2 .
Still trying to rise a few $$ for Huntington COE .Got an appointment with a friend for next week to discuss .
No golf today , but i think i will take a walk before the rain moves in .

My cat ate the battery

Lucky the cat has eaten the battery from the garage door opener , i left it on the counter to remind myself to buy a replacement . I can't find it so i assume i will find it in a few days in his box . Lucky is a four year old tom cat , we rescued from the wood when he was , we guess a month old. He is smart as cats goes and follow me around like he is a dog . He is always biting or scratching Vickie but if i scold the cat she scold me . It would be a sad day here if something happen to that fur bag.

Dr Scott send me a note yesterday to start Vickie on a daily multi vitamin , test show her foliate levels (vitamin A) to be low . I have not yet researched vitamin A to determine the food source , but we will get a good multi vitamin today

Spoke to youngest last night,really have a hard time with work . He is a plumber and construction has stop on new homes which is his bread and butter . I am encouraging him to take the state plumbing license test now while thing are slow. He is worried about the money. I told him if he take the courses and the test to get his license , Vickie and i will pay the various fee's .He made some mistakes in his younger days which are causing him some real problem now in term of opportunity available to him.

The economy is slow now , the only growth is in government and health care. Government growth is not what is needed.I don't see much improvement in the near future and if the federal government don't stop spending money the financial engine is going to stop and the inflation will rise its ugly head .

Another Drug Adjustment

Dr Scott called yesterday to tell us Vickie could not take part in the dimebon clinical trial if she continued to take wellbutrin . After an exchange of e-mail with Dr Edmondson it was decided , vickie would take a half dose of wellbutrin today and on Monday start on cymbalta . The cymbalta may actually work better as it contains some properties which impact pain (leg).Vickie is ok with all of this.
The last change from Haloperidol to zyprexa was a good switch , Vickie's appetite has improved , she is eating very good and so far I can't see a change in mood or movement from Haloperidol , a win -win .
Vickie had lunch with Martha this week , she said a good time was had by both.
Hospital week is over no real news to report , still struggling with profitable and Ego's
The sun is out and the temp is above 50 so i think a little golf is in order .

Meeting week

This is my meeting week between the hospital and the banking commission it takes up three day and part of the evening. I just hope the time i devote to these project are accomplishing something.
As i set here this morning i do not plan to ask for reappointment to the hospital board . The hospital board has become more about politics and dealing with doctors ego than doing what is best for our hospital. The members of county board don't seem to understand the need to place qualified members on the hospital commission and get the hell out of the way. I think there is real danger our board will be filled by wallflowers who just want to be on a board , but are not willing to put in the work need or make tough decisions.The other problem , qualified folks will not be willing to serve.It is an election year which mean the size of the board must be increase to help one of the board member who think it will help them in there reelection efforts
It only take one bad board member to disrupt a board , unless there is strong leadership on the board and if you have several rouge member they can almost stop the agenda .
Enough venting.
Yesterday was a good day in the morning had a good round of golf not counting the putting . Still working thanksgiving lunch location.

Friends

I was exchanging E-mail with an old friend this morning , who i have not seen in person for several year , but we have always keep in touch. I am talking 40 years and we have had some up and down in our relationship during that time.
I have another friend who i have also know 40 years , we grew up in the bank together and we too have had ups and downs ,but at the end of the day we still see each other and play a little golf .
The oldest friend i have is a guy i grew up with . I only see him at class reunions , he has some issues which he has struggle with his whole life . He is not always house broke if you know what i mean , but he is always the same guy .
I formed some special relationship at work over the years . The people i work with and for during my career were important , but i am not sure how you hang on to all those relationships.
I have more recent friend who i have spent a lot of time with the past few years , several years ago his wife and mind had a fight and it made it difficult to maintain the level of activity which we had once enjoyed , but we continued the best we could . We are now on different sides of an issue and I don't like what i am seeing .
I note the word from an old Bob Seger song she used me and i used her , but no body cared. The question for all of us : is friendship a convenient way to make thing happen in business and socially or is it or should it be as Bob Seger sees it ?

Bad news

Late night Vickie and had dinner with her one of her sisters and her husband .During the evening he told us he had been involved in an accident cutting down a large pine tree . He was pinned beneath the tree and had to be cut out. He was take to the hospital and a CAT scan was order to make sure he had no head or neck injury. The Cat scan reveled no injury from the tree accident , but a large spot on the top of one of his lungs. He is a heavy smoker , but seem to be in denial about this . He will go for follow up test this week . Vickie and i are very concerned .
Otherwise a nice evening ,two of their grand kid were with them and i tell you the youngest one (girl) is 9 going on 18 . The food was OK .
There was a discussion about were to go for Thanksgiving lunch , there is a limited # of place open and even fewer choices in Tarboro and i am not sure at this late date they will find any place who will be able to accommodate us. Planning don't seem to be the strong suit for this event.
Since Vickie can't drive that far anymore , we have gone back to alternating between our mom's on Thanksgiving.
The sun is out the and the golf course is calling.

Event

I skipped an event yesterday in Clayton were the Governor announced the major expansion of a local industry . When i got the invitation a few weeks ago i had plan to go, but when it came time i had no interest. I guess after a life time of attending those grip and grin events the thrill is gone and i mean gone. I also skip an oyster roast earlier in the week , because i just did not have any interest in spending the time necessary to get ready to go there and spend an hour with the mostly political crowd.
I toyed with the idea of running for the county commission next year and had a lot of encouragement to do so , and there is a real need for new blood on that body. Vickie was opposed to me running and after i thought about it I am not ready to jump back into the level of activity it would take to run and do the job after i won. I may change my mind at a later date.
The weather is still dark ,windy and wet. We are suppose to have break starting later today ??

Vickie told me last night she don't want to ask her family to help us complete the COHORT family questionnaire, she want she and i to do it. I have got to work around her objection , there is information ask for i know she don't know . I am not sure why she is opposed to ask her family for help ?

Good day yesterday , lunch, errands & a walk . Made fish for supper. All is well.

Duke Day

We spent most of yesterday with the good folks at Duke University health system . Vickie has volunteer to participate in the phase three clinical trials for Dimebon. The trial will run for six months . This will require a visit back to Duke once per month for the duration of the trials. At the end of the trials if the results are positive , Vickie will receive the drug (free) until final approval by the FDA . Vickie was required to give a blood sample which she does not like to do , but she came Thur like the real trooper she is. She also received BASIC physical including EGK .

The other research trial we both enrolled in is the Cohort (cooperative Huntington's Observational research Trial) WOW now i know why they are using acronyms. This study track a patient and the caregiver .This trial starts with a length questionnaire and neurological exam for both of us . This was followed with a basic exam from Dr Scott for both of us .We were send home with a Family History Questionnaire for Vickie, I will complete that with Shirley and Esther's help .

The Staff is great Sara & Peggy make Vickie very comfortable , which is a great help. Dr Scott is also easy to work with. He is low key , but i saw he can be firm when needs to be.
We ended the day at my mother table which is always a treat and back home .

Slow Day

It was raining when i got up this morning and it has not slowed ,nor is it suppose to stop for several days. We need the rain. We decided it was a great day to stay in and get rested up for the trip to Duke in the morning , more about that in a another post. I have been reading one of James Elroy books "Blood's a Rover" It is unreadable this guy has written several well read book but i tell you he must have been on something when he wrote this. I started "Standford's Invisible Prey" today hope that turns out better.
Vickie has had a restful day , we have decided to order pizza for dinner and ride out the bad weather by staying in. i need to get the trash can off the street , but have not worked up the energy to do so.
I have spent a good part of the afternoon on hospital relate issues and i am not sure i have accomplished anything concrete.There are a couple of thorny item which just will not get resolved, oh well tomorrow is another day.
Vickie and will not attend the meeting of the triangle HD support group tonight , because we would get home late and since we must leave here early in morning it would be to much for Vickie to handle. She has a big day in store tomorrow

Afternoon nap

I just got up from a Little nap, and it reminds me of what is great about retirement.I can truly say i have not missed the workplace one time since my retirement in July 2007. I have been able to spend more time with Vickie in the past year ,than i have in the previous 5 years before i retired, in addition i have played more golf in the past 18 months than I ever play the rest of my life combined .
I have another two years on the hospital board and were I sit today i will not ask for reappointment, because it is taking way to much time . It has been rewarding but the commissioner are turning the board into a political vehicle .
I spoke to Stephen for a good while yesterday , he and the family are doing well. Football is over and he is able to spend more time at home . We are still working on the option for him to move the family to Johnston county next school year.
Oyster roast tonight in town ,but i didn't have much interest when the invitation came and now with the rain and cool weather i am in for the night.
Vickie has been on a shopping spree the last few day and today , she bought shoes(two pair) both flats bottom easy to walk in shoes.
Life is good, it is the cocktail hour!

Surprise

I had a nice surprise yesterday ,My niece send me a post on face book and said her father had spoken to her about my fund rising effort on behave of NC-CCHD . She ask me for the address to send the money which i think is great. The other great thing and the surprise was she is in nursing school and last year she was required to do a paper on disease of the nervous system , she chose HD because she new Vickie had Huntington's and she didn't know anything about the disease .She had never told us about the paper. I have ask her to share it with me . I don't know why but that made my day . She has always been my favorite niece , truth is she is my only niece . It was also good to hear that a little activity coming from my request.
I spent all of yesterday outside enjoying the great weather ,most of the time was spent cleaning the outside light fixtures , it is amazing how much crud collects on these things .I did some light trimming , but the hedges are next and that is a weekend job.
Today is another great day weather and i plan golf this afternoon ,after which i will make dinner(pork loin) and maybe we will watch a movie.

Extra Lot

The real estate agent came yesterday to renew the listing on our extra lot , which we did . The market for any kind of real estate is slow , the market for lots only is very slow. I told Vickie if it sells OK if it don't OK. I believe as result of the massive federal debt that high inflation is in our future. When that happen real estate could be a great hedge , but I will deal with what I have on my plate today.
We had a good day yesterday , the lady(ruby) that come weekly to help around the house was here and Vickie enjoys visiting with her.
Out to lunch and a long walk at the shopping center, it was a great day to be outside.Bought a few book off the used stack at the one of the local sellers.
Pasta for dinner (wine too) TV and bed.

Day Out

Vickie and I had to go to Raleigh yesterday, to take care of a few things .We took care of the business and stop by one of the malls , Vickie would normally window shop and I hang out at Barnes and noble. Yesterday Vickie hung with me at the book store and i think that is because she had lot of pain in her legs and didn't feel like walking. Her pain in at it worst in the morning when she get up , but by lunch she gets passed it. I don't know if the pain problem is progressing or if she just had a bad day. We have spoken to all the doctors about this pain none can find the source or if the pain is Huntington's related.We will try walking today after lunch.
All and all it was a good day after the mall we had dinner in Raleigh and returned home early.
Vickie's appetite has improved with the new Med's and she is not up to full dose yet, i hope we see improvements in the other symptoms as well. I sent an e-mail to Vickie's sisters ,her brother and my mom and brother yesterday asking them to consider a contribution to the NC-CCHD project. No feedback yet
Nice day here out to lunch and a walk .

FundRising

I am trying to help rise money to fund the NC center for the care of Huntington's disease.At the same time i have a request on my desk to become involved with the local hospital foundation and every day we received request from friend in the community to support a project or cause they think is important , all very worth while.
I am coming to the conclusion since we have only limited $$ these $$ will go to local HD needs. I am now active in a # of local civic activities which i will move away from over the next few year or as needed to care for Vickie and become more involved in the HD community .
If we can get enough people moving together the NC-CCHD will be a success and have a positive impact on the HD families in this state.
The national convention coming to Raleigh next year will be a big boast for HD awareness in the triangle and NC.
Asking folks to give money to a cause they are not aware of or understand is not successful in most cases unless the person asking has passion for the cause. Who has more passion than those of us who live with HD every day. We must all be warriors for the cause .

Changing Med's

Vickie has been in the process of changing her primary HD drug over the last few weeks. It took her two weeks to come off the Haloperidol and two weeks to get to full dose on the Zyprexa . The only change noted , towards the end of the Haloperidol we did see a some increase in body movements .
The zyprexa has increase her appetite as lest short term, which is a good thing. She has lost 12-15lb over the past 12 months.We think this change will be a good thing, Dr E never liked the Haloperidol ,and Vickie wanted to try something that might help her with the leg pain she has ,as well as help with her concentration and focus.
Vickie has been on coq10 since 2002 and while we don't know were she would be had she not been using the compound ,we think it has been helpful.
Great day weather wise here ,I plan a round of golf this morning and lunch with Vickie and a meeting this afternoon. Full day!

Just me & the Cat

Its early the house is quite just me and Lucky the Cat enjoying the new day. Vickie is sleeping, she normally will not rise until mid-morning. We had a good visit with her mom on Saturday, took her to dinner , she is 89 years old and still lives by her self and goes to the same church, the past 50 years .
We talked about HD and she said until Vickie was diagnosed she had not a clue it was in the family. Vickie's dad past away when he was about 65 with a heart condition .They always thought his moods and behavior were alcohol related . Vickie's brother remembers the movement issue but related them to the alcohol as well .The fact is many family do not know there is HD exposure in their life until a member is diagnosed. Unfortunately there are many misdiagnosed.

New blogger

This is my first attempt to post a blog. This space will be devoted to living with Huntington(HD)as a patient and as a caregiver. My wife Vickie was diagnosed with HD in 2002 . Our life changed since in many way we could never image. We have become part of a new world and still maintain our place in our old world , many new friend have been found and sadly some old friend have been lost.
I was recently out rising money for a Center of excellence for HD we are try to get off the ground in NC and one of the donors ask if I keep any type of journal, which brings me to this place and this form.
I will not recap the time since we determined Thur test Vickie was HD positive , but will go forward from were we are today .
I hope this will not be a record of our experience , but receive input and post from other HD families .