I would love to hear anyone with stories on how they have adapted to the cognitive changes that come with HD! ie.. making lists...
Thanks,
Melissa

One change i made was not having to navigate several pots cooking on stove at same time, i mostly cook one-pot meals now, and always use the timer.

Here's an example. Tonight this will be my dinner. Gonna put some brown rice in a pot, brown rice takes 45 mins, but i will set the timer for 15 mins, cus in 15 mins i want to add some carrots, when the carrots are in, i reset the timer for 30 mins. Then when the timer goes, im going to add some frozen corn, and some fresh chopped up oranges. Then salt and pepper, lots of mrs dash, love mrs dash lol, then drizzle with olive oil, and it will be very yummy lol

Hi all-

If you are interested in the cognitive changes that take place in HD, you may also be interested in one of the ways researchers are trying to get at those issues:

"What do sheep brains have to do with HD?"
[en.hdbuzz.net]

Regards,

Robi

Robi Blumenstein
CHDI Management/CHDI Foundation
robi.blumenstein@chdifoundation.org
www.chdifoundation.org

Mmmm, Barb, I wish you were my cook. That sounds good. What do you have with it?

I think for all the 13 years so far of my HD symptoms, I've been adapting to each symptom as it comes up. I feel grateful for the parts of my brain which seem so healthy and eager to come up with solutions to get around the parts which are dying off. Gradually I know I am becoming less able to do all I want, but still I'm thankful for my ability to adapt and so keep on with a fairly rewarding life so far.

Alice, had a glass of milk it lol, if i had some kale i would have thrown that in too. I only eat meat about once or twice a week now, but i like my one pot rice dishes the best, sometimes i throw california dressing on the rice, and that's really yummy. When my husband was alive, he didnt like Any foods mixed together, so he did most of the cooking, so now im kind of in "one pot" heaven lol

Thanks everyone!!
Melissa

Barb,
That rice recipe with the oranges sounds delicious and healthy. It also sounds like it would feed you for a couple of days. I never thought of putting oranges in rice.

Paula

I don't know if you are still working, but I am starting to make step-by-step directions for my job. I am an accountant and use Excel files for most of my work.

I have a private file for my notes, and the plan is to make sure I don't forget steps.

I don't know if this is an early HD symptom for me or not, but yes, I make lists for everything, and I love using my Outlook Calendar at work. Everything from birthdays, with yearly reminders, to all the tasks that I want to get done in the day. For the daily tasks, it gives me reminders, and I can hit snooze for varying periods of time.

Oh, and if I need to remember to do something when I get home from work, I leave myself a message on our home answering machine.

Or if I need to remember to take something with me, that I cannot physically leave by my purse/keys (too big, or something in the fridge), I'll either make myself note, or if I'm afraid the note might get lost/moved/missed, I leave something representative/symbolic by my purse instead. Like if I need to remember my lunch, I'll put a big bright empty tupperware container next to my purse.

And for super-short-term things, I sometimes write on my hand.



Edited 1 time(s). Last edit at 03/10/2011 02:51PM by smiling sara.

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Edited 1 time(s). Last edit at 03/10/2011 02:49PM by smiling sara.

My husband sets reminder alarms for himself on his cell phone. He keeps track of appointments, to do's etc. I initially set an alarm on my phone to remind him of his evening meds, but he eventually got into the habit and consistently takes them at 8pm, no more alarm needed for that.

I think that many people with HD seek a schedule just for that reason. By doing things in the same order at the same time each day, they are less likely to forget a task.

Works here.

Thanks everyone!!
Melissa

Anyone who uses windows and has Microsoft outlook should seriously consider the calendar feature. It has pop up reminders that can be set up for any time or day, snooze button, etc. At work the first thing I see on my machine is pop up reminders of what needs to be done that day.

This would be particularly good for hd folks who are spending a lot of time on the computer. Set up a reminder not to spend too much time on the computer.

Pete



Edited 1 time(s). Last edit at 03/11/2011 07:55PM by lauraandpete.

I have a huge chalk board on a landing half way between my downstairs kitchen/breakfastroom and upstairs lounge....on here i write a shopping list as i run out of things.... also important things in bold like doc appts and kids trips etc..... i then rub out when things pass and it makes room for the next items... i have different coloured chalks to highlight different items....

I also use a diary/ my mobile phone calander/ and post-its everywhere...

I would like to point out the fact that my partner (Denis) loses his phone and keys more often than me... he forgets the shopping list loses bits of paper etc and blames everyone else!! So its not just HDers cos he is an average DNA human!!

I also run my Mums affairs by probate, look after 2 kids and all their needs, run and organise 2 houses (mine and mums rented out) and 1 shop, 1 car, 1 ill mother, 1 a large allotment and a garden full of flowers and plants I reckon everynow and then if i forget something I can let myself off!!

When i was in my computer programming job what i did find was i would look at a hex string of data (for example) 0fdd1067eab123
read it then go to type it in somewhere else on a different screen and i just could not remember it ( years ago i could remember huge strings of data... and also i can no longer speak French/Spanish when im on holiday... ive lost the languagy bit of my brain ... i was never that good but used to build on my languages when on holiday..

It is difficult to know what to blame on HD and what would have happened anyway to a brain in its late 40s thats drunk too much Vodka at too many hippy festivals for the last 25 years!!!

I believe in "use it or lose it" so im constantly setting myself challanges and seeing if i can handle them... if its tough i think "good" if it aint tough it aint worth doing.

We may be losing neurons much faster than everyone else but we need train the remaining ones to have big muscles and cope with more work.

L x

The way I found out was was "normal" for people my age and where things were slipping for me was by having a "Neuropsychological Tests" done. I use to could do many things without frustration the tide is turning the other direction. Sometimes I say I can't deal with this down it makes my brain hurt, not literally some of you may know what I mean. Still finding ways of making things easier does help.
Thanks,
Melissa

Oh yeah, Lorraine said use it or lose it. I do try to challenge/test myself sometimes too. Even though I've made a grocery list, I'll try to remember everything on it, and just check the list before I check out at the store.

I also try to intentionally take on challenges where I have to multi-task (in a somewhat forgiving setting like church or a social event). As long as I can delegate and organize/make lists, even if I'm not perfect, I think it helps my brain to do as well as I can. As long as I can avoid an EXTREME amount of stress....

I have a church fund-raiser this coming weekend, cooking for 200 people + in charge of 20 volunteers. Well, I know I'm going to be nervous enough about the cooking part so I delegated my husband to be in charge of "front-of-house" and I've tried to make it so everyone knows their roles ahead of time and won't have to bug me too much. Should be interesting!

I'm taking notes of all these helpful hints! Great ideas here!

Carla

PS Barb, I too love one pot dinners. Today I made Southwest Chicken and rice with black beans, tomatoes and japelenos, and chopped onion. So yummy.