I posted this comment on the "In Need of Advice" thread, but thought it might be better to start a new thread instead.



Just a thought, but at the beginning of our HD journey (not long ago) I created a spread sheet to document the information I read on all the different medications. My husband doesn't currently take any, but I figured when he started I'd have a bunch of info on what to take and not take, what doesn't mix with what, the range of dosages that people take, at what stage was it is most effective, side effects to watch for, sources to purchase them, where they are in the FDA approval process.......and on and on.

What if there was some kind of simple data base that those with experience could contribute their experience to. It might end up being full of valuable information for doctors as well since there may be a limited amount of shared information about the discoveries that families make. Disclaimers might be in order even though none of us can really self-prescribe anything.

Does something like this already exist? If not, I'll keep working on my very incomplete and somewhat confusing spreadsheet, but some computer minded person might have a better system that could benefit all of us.

Hi Laura...this is something a little diferent to what you are talking about but an amazing resource

This website has a huge amount of info and resources in relation to treatments for hd...it has links which looks at different medical and natural treatements for hd and links for sections which may be helpful for docters to read

[www.squidoo.com]

It also provides links to other sites, books etc

Dr Goodmans site, which is refered to, is amazing...

[hddrugworks.org]

Hi Laura

Your spreadsheet sounds wonderful! Family experiences have been THE most valuablel input in helping others living with HD whether its on medication, therapy, social support, etc. etc.!

A few years back the HD CoE at UC Davis tried to help HD families by starting the below resource where families could post their experiences on medications, OTC products, therapies, etc. As you can see, not a lot of people responded and there haven't been any posts since 2005.......however the site is still ACTIVE and hopefully will become more helpful if members of this group will take a few minutes to post their experiences!

Love
Jean


Your Experience With Treatments For HD

This list was started by a physician with the HD Team at the University of California Davis Medical Center to hopefully address the questions people always have on the various medications prescribed to "treat" some symptoms seen in HD. Those living with HD know what has been effective and what hasn't in helping a loved one with HD and this doctor felt this could be a place where you share your experience with medications, over-the-counter products, therapies, etc. with other HD families.

Prescription Medications
[hdteam.org]

Over The Counter Products
[hdteam.org]

Physical Therapies [no inputs]
[hdteam.org]

Other Therapies
[hdteam.org]

Jean E. Miller
HD Patient Outreach
HDSA HD CoE at USF~Tampa, FL.
Email: jemiller@tampabay.rr.com
HD Links: [get-me.to]

OOOPS, I'm sorry. Apparently UC Davis took down those threads because when I went to add something new on cough syrups, the link wouldn't work!

It WAS a good idea, just didn't get the support they thought they would get. However you can still read some of the older posts on medications.

I'd like to see something like this available on the internet again!

Love
Jean

Hi Laura.
I think it's a great idea. I shall put Rikki's meds & our experiences with them, together soon, so maybe someone could add them to yours & freds idea.
It would be great if there was just one place to go, maybe a link from here & other HD forums. Where it would be easy to find the information on meds & peoples experiences with them. How they work. What works. What doesn't. What coctails to avoid. All in an easy to understand language for the less brainy of us.

Thats a shame Jean, that the site didn't get the support. I hope that there can be a way to do this. It could save so much suffering.
I found this on the jhd section here........
Duration of illness in Huntington's disease is not related to age at onset. J Neurol Neurosurg Psychiatry 1993 Jan;56(1):98-100 This study is for the Netherlands. In other countries the duration of illness may be shorter, perhaps because of over medication.
The over medication bit is scary that it happens & scary to see when it does happen.

Best wishes
Myrna

When looking up information on Reglan I found this site:

Medications.com
Your online medication discussion resource
[www.medications.com]

Not HD specific, but might be a good source to find out what anyone taking any drug has experiences!

Laura,

Perhaps I can help out some. I will PM you. If you have a list started or compiled, I would be happy to review it and add/comment.