HD Australia

Hi everyone,

Anthony turned 50 yesterday and as he is quite affected by HD it becomes so difficult to know what to give him. I gave money to the people at the facility so his carer can take him out to buy something. Something sensible - he tends to pick up a plastic bottle and wants to buy it for me so I can put water in it!! His carer will say thats probably not a good thing as I would have lots of bottles of water at home.

On Valentines Day they turned up with lovely roses, something he would have done before he had HD. His carer makes sure he is taken care of in those aspects and helps him with buying presents for me (usually vouchers for shopping) and is so good with him, brings him home to visit as I can't cope with him at home by myself anymore.

I have loads of photos I am scanning of him when he was well and making an album on facebook. I still have a lot of photos of the boys to scan for Michelle (they are coming as I keep finding more) as it was mentioned that a tribute page for them can be set up which would be great. I want people to see them as not just HD people but as normal people before the dreaded disease came along.

What do you get for presents for your affected HD people who don't have interests, don't watch tv or dvds, read, have plenty of clothes etc? It gets harder all the time and he still has an unopened box of chocolates in his drawer as the facility are trying to cut back on his food intake as they say he is putting on weight. He also has to eat alone in his bedroom as he apparently had some outbursts in the dining room which frightened staff and other people living there. Obviously they don't know how to cope with someone with HD and it seems he will be moved further away to a facility where they cater for people with HD which will be hard on all of us. I have to do the right thing by him though, even if it means I have further to go to visit him and drive in unknown territory.

I feel sad that both of our 50th birthdays have been a non event, I hear other people who go out for meals, away for weekends in the city to a play and a hotel, parties etc. We don't get to celebrate anything now, how do the rest of you manage to find gifts for your HD people in the same situations?


Buddybird

Debbie, I have no advice, but I wanted you to know I read your post, and I know it must be really hard (((hugs)))

Sal

In terms of presents, I think that it is important to remember that the person he was pre symptoms is still there. Even though the effects of HD make it difficult for him to demonstrate his appreciation of what you do / give him.

Perhaps he would like something tactile. Does he like animals - is there one he could hold / pet (doesn't have to keep it)? Would he like a massage? Perhaps you could arrange for a masseuse to go in and massage him in his bed. Or a cuddle (from you not the masseuse). If he can still cope with going out, is there somewhere that is special to him? Would he like your company to go there for a while. Best if is is a quiet, uncomplicated place though, as this would be less stressful for him.

Or would he like a montage of photos of the people he loves and the things and places he liked, to put on his wall in the care facility. This will give him something to look at and remember when he is in bed. Even if he can not communicate that this is what he is doing and that it is significant to him, I believe he will do this.

If he can't eat chocolates, can he eat a chocolate moose? (not sure how you spell that). Try talking to the care facility re his weight gain, and find out what the issues are for them. Is there concern that he will not fit his clothes? Or that he will be too difficult to manage physically? Or is it because being overwight is unhealthy. If you are happpy with the weight gain (and can afford to buy new clothes), and if his excess weight is not causing problems for the staff who are looking after him, point out to the facility that putting on weight at this point in his illness is normal, and that you are happy for him to eat the chocolates (if you are). He will lose the weight later, and he does not need to worry about the long term effects of weight gain. Being well fed will make him happier, and chocolate is one of the good things in life that PHDs can enjoy all the way through. Suggest to the care facility that they need to feed him first, before they feed anyone else at meal times (hard to be hungry and watch others eat, especially if you have HD = explosion).


Hope this helps,

May

Hi May,

The main carer who has him every 2nd day has tried to talk to the facility along with the Dr but they just don't understand this disease. He goes out every day and on Fridays he goes to a program (finally) where he has a meal, plays games etc.  I take our little fluff ball of a dog in to visit him but he tends to pull her around a lot and makes her bark, as they are not really supposed to have animals there it would only take someone to complain and that would be the end of her visiting. She loves going in the car to visit him but he won't just let her sit next to him quietly - he has to be pulling and teasing her all the time.


I had him home on Saturdays until recently he burnt his foot and for weeks has been having it treated. We went out with another couple recently which he enjoyed, just to a pancake parlour but the facility took his evening meal away from him because he ate a big meal on top of another one. Unless it makes him sick I can't see what the problem is. Our GP says she has the owner on the phone all the time, she tries to explain he can put on as much weight as he can - he has a box of unopened chocolates in his drawer still from Christmas.

He gets a clothing allowance so the carer takes him out to help him buy clothes, so that must be part of his package he is on.  He eats at the same time as the others except he is in his room, they don't make him eat in the dining room alone.

These things have been passed onto the Neuro by me, the carer and our GP and it has been suggested to put him into the hospital the Neuro works from at his HD clinic and he will be monitored there, plus he has a day program every day to attend. He likes the day program and making things. They also give talks, have simple trivia for the patients which at one time he would have been very good at.

I spoke to him about the HD facility and how would he feel going there, told him all the good things about it and he did become a bit more animated. I said they have family days where I could go to things and I know other wives who have husbands in there. It is further away but as long as it's easy to get to thats fine. I don't want him to lose his carer though, although he would visit him as a friend rather than a carer. He is really good with him, he treats him like a brother.

I would take him to the movies but being incontinent worries me, it would be awful for him to have an accident in the theatre. I can't exactly take him to the ladies or go to the mens rooms, I think most places do have a disability toilet these days though. I think I'd be sick though if that happened, my stomach isn't strong enough for cleaning up adults.

Thanks for your ideas though, I am thinking of scanning and printing out some photos and putting them into a scrapbook for him to look through. I had thought of one of those electronic devices but I doubt he'd look at it as he has his head down a lot of the time. I can add photos every now and then, he'd like that. I just have to practice how to print out small pictures - I learnt it all before but now we have a new scanner/printer & it doesn't seem to have the same options - or maybe I need to read more instructions to work it all out.
Buddybird

Hey Buddybird - you are our hero (or should that be heroine??)! You are definitely a role model for the rest of us - you are our inspiration. We all admire your courage and perseverance and determination to stay upbeat and positive .

All the best ,
sonnie xx

Michelle can you wipe Sonnie's post off as spam please?

Thank you but I am no different to anyone else, I keep saying it and I will keep saying it. Don't think I am always happy & walk around feeling good. I definitely don't feel as good as I probably come across but I refuse to let this disease beat me. It can take everything from me but in the end it will be fired upon by the great wands of the scientists who will wave their magic & make it disappear.

A hero is someone who saves lives - well I couldn't save my children's lives so I'm no hero. I won't be able to save my husband's life at this point but then again you never know what's around the corner. We used to say that we lived together with HD so long & that if a cure was found would we be able to still live as husband and wife.

My life is pretty boring, stressful and tearful.

Have I convinced you now that I am no hero?


Buddybird

No Buddybird - you haven't convinced me that you aren't a hero . I'm glad that you don't walk around happy and smiling all the time (I mean, I wish you were happy, and that none of the horrible HD things that have affected your life had happened) - I think people who walk around seemingly happy all the time and who always have a fixed smile on their face are either not empathetic or that nothing really bad has ever happened to them. I said that to my psychiatrist - I look at people in the street and having coffee etc and wonder if they have ever been touched by anything bad - they seem so cheerful and unaware. He replied, probably not as many bad things as you.
You are a regular person, Buddybird, that we can all relate to (it's normal to me for people to be depressed and to get teary) - that's what is admirable about you, that you are honest in sharing your experiences with HD and your feelings. I didn't mean to imply that you were some kind of saint or Pollyanna who sugar-coated everything. Maybe you are no different to anyone else, as you say, but you have sure had different experiences that no-one else has had - and you've shared with us how you've dealt with all the crises in your life - I think that makes you brave (heroes don't only save lives - and you have saved us often by sharing your HD story with us - it gives us strength to carry on).
Perhaps you have one fault - you could learn to accept compliments .
And yes - bring on the day where they discover treatment and a cure for HD - the sooner the better (I'm sick of all those mice getting the treatment - what about us humans, eh ).Magic wands all round to HD researchers!

sonnie xx

Hi Sonnie

Maybe those that walk around with fixed smiles have had plastic surgery and that is how they look permanently

Thanks for your compliment, I have just returned from a meeting where I have had to sever ties with my Carer from Very Special Kids. We had to do some exercises which were painfully emotional - but we learnt more about each other than we realised while we were together. The Case Worker was great and is planning a regular coffee morning for VSK parents and is wondering how to go about it as there are people who have lost children as well as people who have dying children. She is weighing up how to organise this.

I agree that the mice shouldn't get all the treatment first, I wonder how many experiments have gone horribly wrong with the mice that never made it to human trials? I guess we will not be told-I often wonder what comparison we have to a mouse dna system. Being against animal experimentation causes me a lot of angst as I struggle with my desire for a cure but despair that animals are at our mercy to get it. The Neuro said there would be no cruelty involved as the Animal Rights people do have control over what is done so I felt a bit better hearing that. It's not like we hear about the rabbits with their eyes being held open & shampoo put into them to see how they react.

I probably just write as I think, I learnt a lot going through my experience of HD. I don't judge people like I used to as I have been and seen the other side of life that I had never experienced before. I can understand people taking drugs and drinking heavily to block things - not that it makes it better of course. They still have to face their demons when not taking them, but it is an escape but can be a high price to pay for so many. I hear people say things about 'druggies' and think that is how I used to feel but after experiencing alcohol as an escape (which is only an escape when you pass out) I can see why people turn to it. I read Walter Mikac's book (Port Arthur Dad) and he drank at the beginning when he lost his wife & daughters, I don't know how I would go reading it now that I have lost my kids as I read it before Kieran was diagnosed. However like me he managed to get a grip on himself & get the help he needed to move on. I would love to sit and talk to him and see if he could teach me anything about how I can change my life and heal the pain caused by losing my children. He is my inspiration, I believe he lives near me too.

I read inspirational books of people who have lost limbs, come out of comas after attacks and made a new life for themselves, how they overcame things and when the Drs gave up on them they proved the Drs wrong. While reading those I feel an overwhelming feeling that if they can do it, so can I. I would rather something bad had happened to me instead of my boys but it didn't so my job here isn't complete until I see improvement in care and medications for HD people. Purely because I don't want others to suffer as I did, same as these people share their stories in their autobiographies. That would be my ideal job you know, someone recording their life onto a dictaphone and me typing the story up - I would be in my element doing that.

My Dr says she has learnt so much about HD and JHD from my family's experience and is reading a book I contributed to, trying to make sense of why JHD happens from the father more than the mother. I hope she gets her answer because when I explain it, it doesn't come out right. I am told that Australia is far ahead in research than other countries and is the best place to be with HD, lets hope we come up with the answers very soon.


Buddybird

Hi there,

The only suggestion I could think of is the drive-in movies, there is one in Coborg and another in the Dandenong area. I usually take mum to the drive-in’s and she loves it.
You will have to organise the car first and maybe put some plastic sheet on the car seat in case an accident does happens. I usually make the car mum-proof, that way anything that get spilled just goes on some sheets instead of the car.
One of problem is that the movies usually start very late, so I’m not sure what you can do.

Sorry that’s all I can think of,
Mel

Hey Debbie our hero no spam that i can see haha

Oh man, its so frustrating when care facilities dont understand HD...it takes alot of work to keep telling them and educating them about the disease, but unfortunately it seems that's what we have to do.   Its great your docter is supporting you in that. At least if Anthony is moved to  HD facility you wont have that worry and stress....and he can eat as many chocolates as he likes!!! When do you think he will move?

Whenever my mum has a bday or celebration the first thing she wants is chocolate...when i walk in the door at the nursing home the first thing she asks for is chocolate icecream...whenever we take her out she wants chocate cake...lol...so my only suggestion is chocolate/icecream/cakes....and yeah mum is a bit overweight...but who cares thats the least of her worries! I think eating is the last real pleasure she has left...oh other than her massage she loves that too

Hang in there Debbie
Love Michelle xxx

No Michelle, I think the last real pleasure she gets is her family visiting her. I am sure she loves you all to bits, thats why she cries when she is out at the fundraiser because she sees that instead of sitting at home worrying about her and your futures, you are pro-active and meeting others and helping others with this disease.

I think some of those tears are proud tears of her children and how they accept their deal in life and make the best of it, making lots of friends along the way. She may not be able to express it but the love I see between your parents and you with your children is lovely to see.

I guess until our visit in April with Dr C we won't know what his next move is. I may ask at the facility why the need for diet and I have a printout to give them on HD. I don't want to ruffle any feathers though, he's happy, the carer and Dr are handling the facility with respect so it's best I don't cause any problems. I will just ask about the dieting and explain that putting on weight is important for HD people, if they have a case against it then I will say nothing. I don't like confrontation at the best of times and at least I know he is in good care, better than I could give him anyway.


Buddybird