A trip Down To Dingo Dell

With a long weekend upon us we were keen to get back to Dingo Dell it had been nearly 2 years we think since we had been in for a working bee. We were happily committed to the 4x4 Masters Competition on Saturday so we decided to fit it all in and head to Dingo Dell Sunday to make the most of the weekend. David and Liz also joined in for the 1 night stay as did Troy, Mel, Elise, Jessica and Stefan.
We had a very relaxed start to the day leaving Redfern at a comfortable 9am for a Sunday morning picking up David and Liz from their house to join the convoy. We were to meet Troy and crew close to 10.30am but as we got through the mountains he informed us he was running later than expected so we pushed on. The weather forecast was very average but I decided to work on my new theory called Myall Lakes where you drive all the way to camp in the rain it rains for the first night and then you end up with a fantastic weekend. David was a little dubious you could say as we got closer the patches of blue were few and far between but I tried to remain positive.

Tim had kindly sent through a map and simply directions to get to camp and with a little help of the GPS we tackled the track fairly blind but confident and hey if we got lost Tim would be fined even more. As it turns out it was a very simple map to follow and the basic directions were all that was necessary as it is a easy track to find and camp to find.

Just as we turned onto the trail we stopped for a coffee that Liz had pre-made and it went down very nicely with a few delicious honey biscuits. From here it was about 30min to camp. The track was VERY wet and VERY slippery in parts. The rodeo with its little lift did it with ease we only at times lost minimal traction while the XL7 also followed behind at times rubbing its tummy on the slippery ground. The rain had stopped but the tracks were just so soaked. About half way in we spoke with Darren who had gone for a drive up the opposite hill to us and they also were on their way back to camp. We crossed the Kowmung river and made the final 3km track into camp easily while picking our lines in a few spots.

It was so wonderful to be at camp and yep the sun was out. We timed it wonderfully that the rest of the group had just arrived back. We enjoyed lunch caught up with mates and warmed by the fire. Just on dusk Tim played a very moving tribute to our Anzac’s that is one of those moments you just had to be there to witness. Ah then came the cooking of the shared Lamb roast. The Steeles, Smiths, Hammo and Martins had joined forces to cook a nice piece or 2 or Lamb and roast vegies to share for the evening meal. I prepared the vegies and then let Tim and Dazza do the cooking. Well to say it was an enjoyable meal is an understatement. It is almost one of the best camp roasts we have had. We all managed to sit around a big table inside the awning of our camper out of the wind and cold and just let ourselves be engulfed by all the fabulous flavours and wonderful company.

It was a cold night and it was going to get colder the fire continued to grow and we had nice warmers placed under our seats to ensure we stayed very comfortable. Tim then cooked a fantastic beer bread and it was enjoyed by all. Slowly people set off to bed with Tim proving he knew how to do it in style.

The cold morning proved too cool for some who slept in late or like me just refused to get out till it warmed up, the overnight temp had dropped to -2. Another beautiful day was delivered and unfortunately pack up had to happen. We left camp just after 12.30 and headed to Kanangra Walls for lunch. After our farewells we made our way to the Blue Mountains car park and slowly crawled our way through it to get home not too late. Dingo Dell is a great trip with a fairly easy drive in the dry and a very slippery drive in the wet.

HD Posts

I have joined a few Forums on Huntingtons as a way to gain information and share stories and meet up with people. I tonight read the following things on a forum and have taken the words and put them on here. I found them moving and true and so very honest and could relate to so much, I just wanted to share.

HD POSTS.

I have always felt that and still do feel that there is systemic problem in the structure of the HD community. Ours is small. And it started out as not just undeserved but unversed. When a few people finally organized... then organized further... and became natl. and the go-getters emerged. Great people and needed people. Getting any information out about HD to whomever was better than not having any. And these few people were big to the average person dealing with HD. From something to nothing was a big deal. They meet and decide stuff. Doctors meeting doctors... officers talking to officers... board members talking to board members, social workers speaking to social workers. Then they show up and tell us what we need.. or how we think and how we should feel. They don't check if they have it right. Or if they are concentrating in proper directions. And what is supposed to be empowering for us really is just us being treated like kids. "Here is what you need and why you need it." And even how you speak about it in public.

Where is the safe place to go and say I don't like my mother with HD? What is the official answer to that? "Remeber it's the disease, not the person". Well duh. A lot of freaking good that does a 15 year old who gets yelled at in public... and belittled by mom.

Why is identifying HD early or even pre-symptomatic important? Officially, to help with trials... or start treatments to avoid problems later. They won't say or even address, so children, spouces, can resolve issues at the earliest point possible so the kid doesn't hate mom for 5 years prior to the more obvious HD symptoms and then feel guilt forever after for that hate. These are the issues we face... along side the obvious ones that a doctor gleens from 20 mins with us twice a year.

Who says officially not everyone is cut out to be caregiver? Not everyone is. They tell ya how to do it better, but never say you may not be the right guy or gal for this job.

What are the official responsibilities of a sufferer? Do they have a responsibility to their kids.. spouse, family? Or even to themselves? How many suffers before hand, make plans for long term care themselves? I mean go looking at places.. or help make sure there are places? How many, while they can, set up the legalities of decision making for their loved ones? Why can't we say, this is what you SHOULD do! You owe it to your family to help manage your own illness too.

How many times do we have to hear about Co-Q10? Out of 365 days... exactly how often does talking about it help you? So why is a break-away session about it and the few other things all that important?

For the moment... HD is an emotional based disease... for everyone. We have to have standards and parameters that reflect our emotional needs. We are not drawn to a community who is being drawn to listen about Co-Q-10. Maybe we need to offer the the ability to discuss the tough stuff. The best answer can't be "call the cops"... because absolutely no one took any responsibility early to see doctors... get treated... and the potential sufferer had made no plans or given no permission to anyone to help manage various scenarios.

The problem is we have been given the tools .. doctors, social workers, volunteer organizations. However no one had any idea that the tools are not self- automated robots who preform well without the craftsman using them. If we could gather with more incentive that directly affects us TODAY... then we would want to be "here" today. And if all of us could have some self determination in what is said and people actually understand why we say it.. even if it feels counter-intuitive... we will get somewhere. It almost seems like people want to make HD a "feel good" experience when we gather. And yes we do want to feel good... but for the right reasons at the right times. Walking for a cure has it's place... but it's not gonna help for long. It's one nice day one time a year. HD feels good that day... but not so much tomorrow. The game plan can't be ... wait for the cure. That's not a game plan at all. There are lots of tough issues we could be tackling for today and tomorrow, and if the cure comes... then great! It's ok to have the plan and the thinking set for people who miss that boat though. I don't tell my kid don't worry about HD... a cure is coming. Who can't handle that news? If it doesn't come for him.. what should he be doing? How will he have a better wife than I was husband?.. How will he be a better husband than T was a wife? What can he know and do to not be so damn scared? Every situation should have a management technique... and not be addressed with catch phrases.. PC statements and ... as a last resort, ignorance... because there is no roadmap.

Too much time is spent on trying to lend comfort... and not enough to preventing the need of it. I think people will show up for what they need. The hope and comfort road is used up.. poor us... but a cure is coming. More of us are ready to be smart rather than brave about the "unknown". If it's unknown.. it's just because people won't talk about it. Nothing is unknown.. mostly just unspoken. Or... we can keep saying... "it's the disease... not the person". But people only show up one time to hear that one.

Too many times have I heard "Remember it's the disease, not the person". But how do you know who a person is when all you have ever known is the disease. It is guilt that holds me to him, and it is the guilt of wanting to run away keeps me from reaching out to help the greater good. It is not easy to step up to help the masses when you feel like you are failing your own family.

I want a big fat manual a "what to expect when you are expecting...hd"

I want to know the specifics of how to plan ahead, how to ensure I will be taken care of if hd overcomes who I am as a person and I find myself alienated and alone. I want to know how to care for someone who has made no plans and doesn't care for your care. I want to know how to survive with hd and then once I have mastered that I will put some hope in a cure.

Easter @ Bendeathra 2010,

So the car was packed work was over for the week and we had decided to head in Thursday night to get 4 nights camping 3 was just not enough for the beautiful Bendeathra. We got away from home at 8.30pm and only had to make one fuel stop. We stopped for longer then we wanted but before long we were passing through a sleepy Braidwood and were onto the dirt. Oh getting closer by the moment we had a few near misses with wombats but then we saw the sign and turned onto the track into Deua National Park. From here it is only 23Kms to camp though it does take an hour and a half at a minimum. James aired down a little to make things more comfortable and on we set. It was a very uneventful trip in and with only 5kms to go we heard Mick Hill calling us on radio to tell us they had arrived found ray and were set up and heading to bed. The camping spot where we were hoping to camp already had 3 groups of people so Mick had made the decision to just head to our normal spot. We pulled in about 2.30am and had our camper up and were in bed by just after 3am and this has to be one of the best feelings in the world. In our favourite camping spot a cool night tucked into a very warm comfy bed knowing that it is just the beginning of relaxation.

Friday morning was a slow easy start we slept in and once we woke got going on setting up the rest of the camper. In no time the awning was up the mats were laid and ensuite was ready. It was only 11am and with coffee in hand we settled in to wait to hear for the rest of the campers. Mick and Jo had also decided to head in Thursday night and had pulled in, in nearly daylight so they arose late and were busy as was Mick and Jeanene setting up their camp. It was nearly 1pm before we saw the first cars cross the river from the second convoy. In this group was Walter and Alicia, Chris and Linda, Nick and Danielle and Richard with Corey and Jessica. Camp was set and then not long later it was nanna nap time I decided to have a rest and after waking hours later it turned out most of the rest of camp also decided to rest it was a very quiet camp. Festi Stu had also arrived and was busy getting his camp set. The boys then went out wood collecting, a fire pit was found we choose one that was central and had been previously used. After a very relaxing day of doing not much we cooked a fantastic roast and had a very enjoyable evening by the fire with great mates.

Saturday ah the day of sport. I had managed to pack Tennis racquets, Frisbees, Footballs and a Volley ball and with the post on the forum Linda had a Frisbee and Badminton racquets and Richard had a net and more racquets as well as a Football and Basket ball, Festi Stu had put in his Boche balls. Mid morning I walked out into the middle of the field and just started throwing the Frisbees to anyone passing it was only minutes before almost everyone had emerged and was joining in. Now 3 Frisbee’s going at once is just not enough so out came the footballs and volley ball so we now had almost as many flying objects as people it was a whole lot of crazy fun. Watching everyone’s different style for throwing catching and kicking was just plain funny at times. Richard set up his badminton net and Linda Corey Jessica and I gave it a go, while Festi Stu, Mick, Jo, Richard, Wally, Jeanene, Aaron and Sara all were giving boche a go. James later decided to join us at Badminton. We then decided that Volley ball was the next sport. Jo joined in and so did Festi Stu and we played 2 games. It was getting very warm being out in the sun so off to the river for a swim it was. We lead most the group up to the rope swing swimming hole where most of us went for a VERY cold dip. In went James then Danielle and following was Corey, Nick, Richard, Festi Stu, I made a dive and then Wally chose the dive in and froze everything, Jo was the last to get in but she made it. Just as we got out Chris and Linda dropped down and took some photos and video. It was so cold when I got out my hands started to swell up and it took hours before they were back to normal. Back to camp for a later lunch and an afternoon of resting and relaxing. Tennis was the sport of the afternoon with the badminton net lowered James, Jo and I hit a few balls and then Mick and Jeanene had a few rounds. It was camp oven night and I think there were 8 by the fire in total. Chris and Linda had made a rum and raisin damper and it was cooked wonderfully and then caramel topping was added just to finish it off. Everyone had a piece and it was as good as it looks in the pictures. Stefan had joined early evening after making his was in via the Merricumbeen track. Now with Stefan around the fire there is never a dull story to be told and well you just had to be there to hear the 3kg story. Mick and Jeanene had a fantastic game to share where we all bopped it, twisted it, pulled it and then screamed it just to finish it was a challenge but as a group we laughed and had a fantastic night.

Ah Sunday chocolate and more sports. James and I had taken our mountain bikes so we went riding exploring tracks and riding up hills within the area we were as we didn’t fancy carrying the bikes across the river. It was a great way to breath in the fresh mountain air and we managed to see 4 lyre birds along our ride. Walter, Alicia, Nick and Danielle, Richard, Corey and Jessica all decided that a trip to the caves was in order so off they set mid morning. When we got back it was time for a Volleyball rematch. Linda, James and I teamed up to be later joined by Festi Stu, against Jo Jeanene and Stefan to later be joined by Mick Mac. We got 2 games in before our teams of 3 became 4 it was 2 games against us and we then one the next 3 in a row to take out the series for this year. It was a fantastic game with a few long rally’s getting going and everyone got working as a team. James, Linda, Jo and I headed down to our usual spot for swim. When we arrived it was so fantastic to see that all the weeds have been washed out and I could swim right up the middle to the rock with no weeds in sight. The water was so crisp and fresh it was just wonderful to be in it. Chris, Linda, Stefan and Ray all were departing today so they had to get packing and on the track out. We said our farewells and wished them a safe journey home. Sunday afternoon I have to describe as the ultimate point in relaxation. Out came my picnic blanket and pillow ipod and camera and to just lay in the sun and absorb the atmosphere was wonderful. The caving group arrived back filthy and starving so they cleaned and lunched and set out relaxing. More badminton was played and wood was collected. With a few people gone it seemed a very quiet night around the fire.

Monday pack up day. We woke late to find the valley covered in mist, so we setteled in to have breakfast and wait for it to burn off before thinking about camping we did not want to pack anything away wet. Wally and Alicia were packed first and headed out early. Nick and Danielle, Richard, Corey and Jessica all set off next together. Festi Stu and Mick and Jo left next. Mick and Jeanene headed out via Moryua and we were the last to leave after enjoying our lunch in the valley we hit the mountain not far behind Mick and Jeanene. We could hear Mick and Jo on the radio and they informed us they were in the middle of a long que slowing making their way out. We caught the convoy at the trig. Not far down the hole convoy stopped and we found out that someone in the front of the 1st convoy had broken an aerial so they had just stopped mid track they were kindly asked to move over which they did and we asked if we could join us behind Mick and Jo and again people were kind enough to move over and let us pass. It was not long before we were turning back out of the park. We farewelled Festi Stu and Mick and Jo here where they decided to air up we pushed into Braidwood to do it and grab a coffee while we were there. We pulled into home just on 6pm having only had a small amount of traffic we were glad to be back.

All in all WOW what a fantastic trip we cant wait to get down there again and the bikes and sporting equipment are going to be a definite part of every trip from now on. Thanks to all who attended every person made it the wonderful trip it was.

Us2martins chilled out Easter in Bendeathra.