national HD convention

Vj and I attended the national Huntington convention this week-end. The convention was held in Raleigh NC and was well attended .I would encourage anyone with HD or those living with HD to attend a national or state HD convention . The range of subjects discussed is very broad and the speakers are all top flight. We were very surprise by the number of young folk who were in attendance, they are part of the National Youth Alliance (NYA) . They will be the future of the National HD movement. I am amazed to hear the stories of the families with HD and the Issue of who has been test and the other who either will not be tested or are in denial. I guess i only need to look at VJ's siblings.I left with quite a bit of research to do and I hope to start on that in the next few days. Remember the Name CHDI they will be big players in the race to cure HD.


The past week at the hospital was interesting , the visit to Washington was productive. The HUD folks were well prepared as was our team not withstanding my performance which I graded only average. Our board is is denial about our financials , It seem the members think they don't have any responsibility for the financial condition of our hospital. All are willing to promote there chosen project to some degree even at the expense of the overall best interest of the Hospital. But for the most part only want to come to meeting eat supper and leave without much impact.

Vj had a long week-end and is taking her afternoon nap , she did great and gets the trooper of the week award . We will continue to explore option to keep her healthy . We had a suggestion from another couple who found the best way to travel with a HD person is by train, we May try that.

Life is good!

new week , new adventure

VJ and are laying around this morning with our coffee getting ready to visit my mom and my brother for lunch.My mom is still the best cook I know when it comes to putting good food on a table.

The crazy week starts in the morning with a 5am pick up for a trip to DC for a visit with HUD to reassure them the hospital will repay the money we owe .This is a one day trip so I expect to get home by ten pm. I don't remember the last time I had one of these days. The rest of the week will be taken up with meeting at the hospital.Next week-end we will attend the national HD convention in Raleigh , we will go on Friday and return on Sunday.We are looking forward to the speakers and meeting new folk from the HD community.

VJ continue with the Dimeabon study ,not sure i have seen any improvement. I have notice she sometimes has trouble forming word and sometime I must ask her to repeat what she said.The drugs which she has started on for her back pain has had some positive effect , but i am not sure we have found the final solution. We have start using either a wheel chair or one of the self propelled scooter when can find them while shopping, it make a difference for her to move around large stores.

We got out on the lake one night last week and it was very nice, but VJ has a tough time getting in and out of the boat ,I got to find a better way. couple of good day on the links , played well and lost $$, reminds me of what my brother Larry told me "if you play the best you can and still lose find another game"
The saga at the hospital continues, we are waiting for the other shoe to drop, in a particular matter.
Life is good!

Lazy sunday morning

Not much to share this morning, the sun is bright the flower are blooming and the birds are nesting i guess it is summer. The week past quickly with mostly golf , some good and some ugly.

VJ is up to full dose on the new meds, we should know in the next week or so if the she will be helped by pill or if we must move on to the next option. The Dimeabon trial has a month to go and we have not notice any changes. The national HD convention is in Raleigh the last weekend of this month and we are set to to attend.

Hospital saga is ongoing , we have an opportunity to address one of the core problem next week, it will be interesting to see how the board deals with the situation.I hate to quit on any thing i sign up for , but I am not sure I wish to invest another year of my time for free to the county .

Vj and had dinner last night at fire bird restaurant , it was OK but not good enough to return , the food was OK note great and the price was in the upper range. live and learn.

Life is good!