Hi Everyone,

its been a while since my last post. I know HD surfaces in many ways but when does it become obvious to the person that something is wrong and not going away ? or more subtle ?

I am at risk and have chosen not to test for the time being. I have been experiencing some balance issues which come and go. Not to the point of falling over or bumping into things but just an general uneasiness on my feet a times which comes and goes a week here or there on and off for the last several months.

Can symptoms come and go or once they start do they stay and progress ?

I went to the doctor and mentioned the light headedness with no mention of my at risk status to see if somehting else was going on but the tests were negative, catscan, neurological visit etc etc.

thanks,
>>Lp

In my particular case, the symptoms have stayed, but have progressed very little.

I have balance issues - but have largely learned to compensate by watching where I step. Especially going down stairs.

But I think I'm atypical.

My Mom started maybe 10 years ago not feeling comfortable walking on smooth surfaces , walking on carpet she felt more secure . I understand her feelings , there have been times I get a funny feeling walking on smooth surfaces . It is just my own theory but I think that the carpet gives more force on the nerve ending in the foot and that feeling gets transferred to the brain easier because of that . ( I didn't say it was a great theory , just mine ) But I do believe I remember someone posting symptoms , can come and go . Did I just dream that ? db

thanks Guys... I like the theories

I'll keep on plugging away until it get clears or gets worse...

cheers,

>>Lp

In our case, some symptoms did come and go.

Driving, for example, a few years ago my husband's driving was terrible! He was all over the road! This was before his diagnosis and one of the things that indicated that something was wrong.

After going through the testing process,and being diagnosed, we realized that he was at the crossroads....being able to continue working or not...we decided that work was becoming one of his biggest stressors, and that going on to a disability support pension was an option we could now take. I expected this to be a monumental hurdle for him because he had such a strong work ethic...but to my surprise, he went without a whimper. He was well aware that he couldn't cope with work any longer and was relieved to give it up.

With this major stress eliminated from his life, his symptoms subsided back to a level where he could pursue his major passion...surfing.
He became a beach bum! And loved it. We call it his hydrotherapy.
(We would all probably respond well to having stress removed from our lives, eh?)

As time has progressed (3 yrs now since his diagnosis) so have his symptoms. He is finding everything very difficult now. His body is not co operating with what he wants to do and he is getting very frustrated.

But he can still drive...he has a restricted license, and can still drive to the beach and watch the others surf even if he can't manage it himself on the day. The testing authority says he is ok to be on the road, so as long as that stands, he will be at least a bit independent.

My symptoms have progressed slowly, and I noticed that one year I fell down a few times, but then I got more careful and this symptom went away. I haven't fallen in 2 or 3 years, not to say I won't in the future. I also had trouble reading aloud to the children I work with, but as I did it more, my brain seemed to adapt in other places or something and now I'm good at reading aloud. So I think maybe you get symptoms and your body adapts and works in another way to make you improve again. That's my theory anyway...

welcom JJ,

glad your here jj, glad your husband is having a gentler life right now, and ofcourse i am sorry that your husband has had to live this.
i hope with all my heart that the help we need will come soon, two years, that sounds good.

hope you and your husband visit here often, look forward to talking to you further.



oh how did your husband get a limited license, could you tell me more about that?

I'm about to do some more updates on BDNF (always on the Lighthouse hit parade) and something occurred to me. Is it any wonder that people at risk who later turn out not to have the gene nevertheless thought they were showing symptoms? Stress lowers BDNF and so does HD.

Marsha- again you have such a great point!

As foolish as I feel to sit here and admit that though I could have hd (I haven't tested)- I believe what I spend most of my year thinking to be hd- was indeed stress.

I feel like it is my calling to try to warn other at-riskers not to jump to conclusions so they don't ruin time obsessing about it like I have.

skmf...thanks for the welcome.

I'm from Downunder. We have restricted licenses here in Australia. My husband has a restriction of 100km from home provided he is declared medically fit by the doc. As his illness progresses he may well be restricted even further. They are also talking about introducing a "Local License" for older drivers. This allows them to drive 10 km from home dependent on a medical from the doc.

Do they not have this in the US?

jj,

heck no, they dont have anything as cool as that. alot of people may not like that idea, but it sure would be nice for some people to keep their dignity and freedom as long as possible.
oh and by the way, i've almost made it to australia three times, and i ended up going to london instead... but i hope to get there soon.

if i do get there, you'll have to give me the scoop on all the best australian wines k?





Edited 1 time(s). Last edit at 10/07/2007 01:06PM by skmf.

Hi skmf,

I can't believe anyone would choose the UK over OZ!

Australia is the ultimate destination!

We have everything here....the best beaches, great snowfields, deserts that go on forever with a big rock in the middle. (Ularu) Some may not find that too appealing but OZ is a whole bunch of desert in the middle, and it's a big middle! But round the edges it's awesome!

This place is so big, it leaves Texas in the shade! And we only have 20 or so million people (who also mostly live around the edges)
WE also have some of the world's most deadly creatures, but we don't encounter them much....they don't like humans much and mostly stay away from us if we stay away from them.

I have an American nephew who, when he came to live here, couldn't believe that there were such beautiful beaches with hardly anyone on them! And no high rise buildings either! (Outside the cities that is.)

And wine...some of the best wines come from OZ. We have so many wineries that you can have a holiday here just touring them. And there is so much distance between the states that you have a wonderful time checking out the scenery on the way.

Should I get a job with the tourism authority?

And as for the driving...I figure that if there is a test that certifies someone to drive, then that's ok with me. My husband will be tested every 12 months and certified medically every year as well.
I'm surprised that America doesn't have a similar system. It sure helps those who have disabilities to stay independent for longer and their carers don't have to be the taxi service sooner than is necessary.

Anything that lessens the impact of this disease on both the pHD and the carer has to be a good thing.

See you in OZ one day maybe?

JJ

oh JJ,

i so wanted to go to australia, i cant tell you how much.
the reason i ended up in london every time, is because, i fly standby...
if i paid for a ticket i'ld never afford to go. but i work for an airline, so i travel on standby status. three different years i tried to go, and the planes were weight restricted each time, and i didnt get to australia...
after those three years i just gave it up. but i know many many people who go to australia regularly, and all they can do is gush about how fantastic it is. and money goes a long way there i hear.
yes i will try it again someday... although the thought of a 14 hour flight isnt really appealing.

but i think you would make a fantastic travel expert... now i am all fired up and ready to go...

oh and p.s.

about those deadly animals...

Skmf...Ask your friends who've been to Oz if they ever saw any of our 'deadly's'.
Like the kangaroos, they aren't exactly running down the main street!
We have snakes and spiders and other 'nasties', but we don't see them very often. They are mostly in the 'bush'...outside the cities.

So 'come on down' under!

It's good to know you didn't actually chooses to go to the UK instead of Oz...it was taken out of your hands.
And the 14hr flight is a bit of a put off. I thought it took longer actually....

Anyhow, it's good to have a diversion from the hum drum of life, isn't it? We all need to take some time out and stop and smell the roses from time to time

Happy travelling....JJ

My sym are better or worse at different times. I would say (Totally a guess) as the neurons are dying maybe they come and go like a loose connection in a TV?
Melissa B

I am also at risk and I asked a question recently about going to the neurologist.

Each person with hd that went to a neurolgist that answered promptly told me that that they failed some of their tests or the neurologist at least noticed issues. I have not heard yet of anyone going to the neurolgist after they noticed that were having issues and getting a clean bill of health- whether they even knew to tell about hd or not. If I am not mistaken, I believe there are some neurological indicators that would give away the fact that you were having a neurological issue that needed looking into. Perhaps your balance is just a sinus or ear problem? My not at risk husband has a balance issue that comes and goes.


If your scans and tests are fine- you are probably fine also don't you think? Just wondering if you are symptom hunting? It seems we are all guilty of it?



Edited 1 time(s). Last edit at 10/10/2007 01:35AM by TracieT.

Tracie,
Of coarse I am sym hunting. But I know myself and the changes that have happened throughout the last year and I know that it is HD. At John Hopkins they said that they can't "clinically" tell me that what I going through is HD but they also said they could not say it wasn't.
Melissa B

Johns Hopkins excels at not seeing HD symptoms.

Marsha,
That explains alot! Now I get it! One thing is I think they don't diagnose HD unless there are pretty visible movements, mine are all inside for now.
Melissa B