Half the year is gone

We have been in Charleston almost one year and have settled in for the most part. We have not completely assimilated into the community yet . There are many activities , but few that VJ can take part in . VJ maintains the great aptitude and fights on , but the HD is slowly gaining , her balance is mostly gone and she fall often , her dental problems are getting worst  she has lost one tooth and it is likely she will lose more. She still likes to go out to fancy restaurants which we do once in a while . I get her up and dressed and out of the house for lunch everyday . 

We attend the national HD convention in Jacksonville FL. last week and heard a lot of good speaker , but I am sorry to say I don't think any of the stuff  talked about will arrive in time for VJ.

I am toying with the decision to move VJ HD treatment to the MUSC , they have a movement  disorder clinic and it is 25 minutes from our front door . Duke is great , but 4.5 hours away one way.

We stopped on the way to JAX for a overnight visit with our friend Steve & Linda . They have moved to a large retirement community in SC . Over the past 25 years we have traveled and party with Steve & Linda and have a lot of great memories  , but those days are gone -sad.

The house we moved into in December has come together , we have made a few repairs and  added a small screen porch , which we enjoy and I expect will be VJ's window to the outside world in the near future.

The grand kid are growing , and going through what all kid do. The 13 year old is acting 13 and the younger two are catching up quickly. We gave our boat to them and hope they will use it to bond with each other.

I talk to a few of the folks in Smithfield  once in a while , but that phase of our life is over and I did enjoy living there and made lots of friends it is all in the past. sad also.

MOM is still living in her home and doing quite well @  89 . MY youngest son is still not talking to me. My brother has a few nagging medical issues  , but still runs his business and rides his Harley cross country every summer .

I have played golf twice since arriving in SC, but have continued to walk enough to same sane.

I saw a piece on 60 minutes last night , the subject was a noted historian and he said the thought that the USA was in decline was not a new thought , he referred to writing & speech by Jefferson & Adams  in the 1700 who said the same thing. I enjoyed the interview and I am sure he is  correct , but  he also pointed out that it is important to learn from the past.  I think that is  also true in ones personal life and I try to do that not always successfully. The folks in Washington have not learned anything and don't seem to own a history book .

Life is good.

Nov/22/2012

I am Back , I was last on this blog in June and a lot has happen since . After a lot of sole searching we sold our house to a couple in the community. To make the deal work we financed most of the purchase price. I am comfortable with the arrangements . We got enough $$ up front and have good guarantor . We moved to the Charleston SC area in August into a rented house in the Elms , (over 55 community)  Getting settled in more about that later.

Before we left Smithfield , we contracted to have a walk and pier added to the other lot in order to enhance the salability , no luck yet . We had a month long permitting process and we move about time they started construction. The contractor I used I had used before , not sure what happen to him  , but he turned sorry. The job is done but I can't get him back to clean up the site.

We are slowly getting to know our way around the new community , the cost of living here is much higher than Johnston county NC but the choices for everything are much much greater . Stephen & family are 20 minutes away with no traffic . The church & soccer field are 15 minutes away.

We have contracted to buy house in this sub division and will close on12/4 and move over the rest of the month being out of here by 12/31 . I hate the thoughts of moving again , but this should be the last move for a while and VJ wants the house badly . The house has a nanny suite which may come in good in the future .


VJ has been having trouble  with her teeth , so I contacted the MUSC dental school  and we saw  DR I . The first visit he told us "I know nothing about Huntington's "    . When we returned the next week he had team with a  genetics and after a search of some dental data base found only three cases of dental diseases in HD folks . He & the team working on VJ told us VJ dental problem are serious and she most likely will suffer the loss of all her lower front teeth. He is suggesting they use VJ's case as  a study project , we will see how that goes. We will return in a few weeks

 The election is over and it didn't go the way I wished  , but with the bunch in Washington we are in deep shit anyhow .Stand by to pay more tax no matter what you tax bracket and stand by for more regulation , another form of tax. I read an article today about the hostess bakery issue  and if you read carefully you find the real problem is not the baker union , but the teamster and there work rules. The bakery will be back  , but in a right to work state , and the mean time 18000 folk are on unemployment . My Rant for today !

Lunch today with Stephen & his family , great food & company  Thanksgiving !!

Life is good !!!

    

The beat goes on !

VJ & I are having a discussion about the shoes she wears , She like to wear those strapped saddles which she had a hard time walking in and I ask her to wear her flat rubber bottom lace up shoes.She is a pretty woman and still likes to dress up in her nice clothes . The problem  continues to be her many falls or near falls. I find her reasonable sometime and other not so much. Dental issue still work in progress , she wants implants , which would be $20k and suffer the same fate as her real teeth in a short time, still looking for DDS who has HD experience.
Took the house off the market for a while to give it breather, will  re list in 60 days or so. A couple that live out here have approached us and would like to buy the house ,  but  would require us to carry the mortgage and we are willing under certain conditions only about a 40% chance it will fly.

SJ had a disappointing week , he apply for a job he wanted badly , he was not selected and was down , I suggested to him that thing normally happen for a reason and he should keep his head up and do a good job were he is  now and his future will be bright . He  and his family have good to FLA. for the week to see the mouse . They ask us to join them , but one trip to mouse land in a life time is enough.

Still have not heard from #2 son.

I am think about investing another $8k in the lot next door for a pier , it will help the sell-ability maybe?

Great weather of late, golf game is good.

Life is good!

Good morning to me and you and the rest of folk who have just gotten out of the bed. It is great be get up and not face any larger challenges , with the most important task I face today is making lunch and supper.

Vj has a dental problem which is getting  worse and I am not sure there is a solution  that will make us happy . Her teeth are lose and  our dentist don't have a solution , the problem is created by the action of her tongue against her teeth  . Her tongue move constantly. Sometimes when drinking from a straw which she must use all the time, the tongue will push the straw out of her mouth. We have the name of a dentist who works with one HD person who reports good result, I am going to call him and discuss VJ's problem before I make an appointment . Another issue that is getting to be an  problem  with VJ , is her impulse buying of clothes. She don't have another outlet so she buy clothes and not cheap rags , but high dollar stuff that goes into her closet which she may wear a few time before she give them away.I have got to address this in the near future.


 We are going to the beach for a few days next , week, just to get away for a few days , VJ said she want to go to the Portland grill for dinner and want us to dress up for the occasion which is something we don't do much anymore.  


We have taken our house off the market for the time being, it has been a year and we have had seven showing and one offer . I should have taken the offer , but the offer came the first moth after we listed the house and  both me and our agent made the decision to pass . Hind sight is perfect !!  We will re list   the house in 60 days with another agent .We have had one couple come forward  who wants the house , but they are just lost there house to foreclosure and need use to finance most of the purchase price ,  not sure it will work ?? 

My # 2 son is still not talking to me , which pains me a lot , but there is not a thing I can do , but continue to call me and hope he will come around . This s the same treatment he gave his mother the last ten years before she passed away.


# 1 son and family seem to be doing great and have  big summer planed , we hope to get to Charleston in the near future .


The election season is in full swing and I read an article by Maureen Dowd in the NYT this morning which I think captures the profile off our president  perfect . Ms Dowd is cut from the same cloth as the rest of the folk at the Times which is far left .  I hope the election will bring needed change  but we were sold Hope & change last time and that turned out to be snake oil..


Bought a new driver and # 3 , and the sales folk convinced me to go to senior shafts . Hard on the ego.


Life is Good!

Memorial Day : God bless America and all the men & woman who are serving or have served this country . I saw a fellow names Hayes on MSNBC this  morning who claimed to a have problem calling fallen american service men/woman hero because it would seem to promote war or I think that was his point . I would like to drop his ass in a VFW or American legion hut in anywhere USA and ask him to explain his position .  Or better yet leave him in a hot war zone for 30 days and see if he has a change of heart .

Vj is having problem with here teeth and our dentist don't have an answer and she has consulted with a specialist who could not offer a answer   . The problem has several causes the first being she can not floss her teeth  , because she does not have the control over  her  movements to be able to hold or manipulate the floss . Several years ago she switch to an electric tooth brush , but  that is difficult for her. The other issue , her tongue is constantly moving pushing against her lower front teeth.  I need to do some research on this problem. I am going to contact Sara at the NC-Huntington organization to see if this issue has been addressed at some point .HD has some many issues and they are so different is different  people.

We had the Stewart and Ms Howell  over for dinner last night , the first entertaining we have done in several years. Vj seem to have  great time and was able to enjoy the small group and while she did not take a active part in the after dinner conversation she did participate .  My Rib turned out good and I had the kitchen clean before  I retired for the evening .

Meet with F/T and we are making some progress toward Charleston.

Golf two days last week played well weather was great,the weather is iffy this week with a tropical storm banging around in norther FL. We will see were it goes and go with he flow

The gardenias outside my window are in full bloom this week, it look like a white carpet. The bloom only last for a short time but they are great to look at and the smell from all those flower is wonderful.

I have located a radio station on the web that stream blues 24/7 and it makes any task at this lap top easy   (WGLT) somewhere in IL .

Life is Good !

I have spent the last few hours cleaning up my desk of trash, clutter and paying bills . While paying our bill ,  I was in the process of entering  our annual payment to AAA and realized there were two card one for me and one for VJ . She has not driven in several years and we only have one car so I was able to save a few buck. My point is I need to look a the rest of our business to make sure we are not paying for something out of habit that VJ no longer needs.

I have a trust set up for VJ in the event something happen to me with the trust department at my former employer. They will manage her money and make sure she is looked  after .  During my career I saw so many folk ripped off by friend and family  I decided to use a third party . The cost is not bad since I get the a discount for the service.
I think one of the big issues faced by HD families is financial and I am not sure we are addressing that issue beyond the push for SSI issue. I know I am so busy with life,family and VJ I don't think about other folk issues. I think it is an issue that maybe should be address by the state & national chapter.

The folk next door have teenage daughter who will be a working at a summer camp on lake Norman and she need to get a little  time on the water  so I have agree to take her out tomorrow afternoon so she can get a little time at the helm of a boat .Should be an interesting afternoon . I think she is  level head kid so it should be fine.

Sore foot no golf .

Life is good !
  

It was a busy week-end for us , with an HD education day on Saturday morning in Chapel Hill and mothers day events Saturday afternoon in Angier and Sunday in Martin county.

Saturday morning VJ & I attended a HD event in Chapel hill, we could only stay until lunch , but we got to catch up  with some folks from the HD community  we had not seen for a while. We also were  able to catch the the morning speaker Ken Serbin alias Gene Veritas  Huntington disease blogger. Ken had good presentation on the current state of Huntington from a global perspective , Who the player are and what are some of the major happening in  research . Ken ask the question were are the people ? why is this room not full ( we had  small turn out)? One of the issues in the Huntington community is lack of awareness &and understanding of the disease. The morning  topics also included  advocacy on HR 718 &and  S 648 ; and how to talk to your doctor . We were not able to stay for the afternoon . I will follow Ken's blog starting today curehd.blogspot.com

Vj continues to hold her own , balance is gone and her speech is not what it was last year this time. She maintain the good attitude and had shed completely the stigma she had of HD . I heard her talking to someone the other day and she told tell a lie and later she said to me, I lied to her and I don't know why . I continue to see small things like this come out ??

We had a Gardner mother's day event in Angier , with a good turn out , I saw some of my relative I had not seen in years and Mom was in her element , she had a large # of her family around her and there was lots of great food and conversation . There is some friction with aunt Helen's children , she was not there nor were any of them . Not sure the problem but it is a shame. It is close kin to my youngest son's  anger right now with me , not sure the issue  , but i have faith he will come around. The food was outstanding and I over ate .

The Wynn mother day was on Sunday in Williamston which is two hours in the other direction. We meet at a restaurant and  had the table for 45 minutes and that had to get out , long table with out much opportunity for conversation except with the person in front or beside you . Vj didn't want to go to her mom's after lunch so we drove back home.

We have had some development on the house, and I think we can sell it if we are willing to owner finance and under the right condition we will do it , but we have a lot of work to do before we can make it happen . We will see ??

Golf game has been good .

Life is good!!