You said that you have improvement in your HD recently - what specific things are you noticing improvements in and what are you doing differently to cause the improvement - Good for you - I am always looking for new ideas - as long as its not anything weird like Laser Treatments

AR

'Carpe Diem'

Are you now calling your laser treatments wierd Andy??? lol You are so funny. Actually Andy, when i was diagnosed 5 years ago, i was just staring into space, was so confused, and couldn't even follow a conversation with my husband. My love for quilting went by the wayside, because i couldnt figure it out any more. Two years ago i started on memantine, and within 3 weeks my head just didnt feel all foggy, and i began doing my quilting again. I'm actually working on a real special quilt project right now, it's been a goal of mine to be able to do this, it will be a wallhanging quilt, a gift for my hd clinic, and soon i will have it finished and show everyone. My symptoms are not all gone to say the least, but my improvement my doctor told me a couple months ago is astounding. Others have tried memantine, some with good results, and some with not so good. Here is a link for you Andy:

[www.stanford.edu]



Edited 1 time(s). Last edit at 01/05/2009 06:37PM by Barb.

Barb,

Can I take this one for you? I can explain a couple of things you do that has helped you?

Teressa

Oh yes Teressa, i like hearing what others see. Maybe that i'm a fighter and that helps? I don't know. I also have a low CAG which maybe helps, i know having friends helps. What do you see Teressa?

Barb,

I just sent you 2 PMs.

Teressa

Barb,

I am sure you are doing more than I have observed, for as I've said before, I've been in and out of site for awhile. If I am wrong on anything, please let met know.


First and foremost you stay as active as possible--physically and mentally.

As soon as you were able, you went back to doing something you love--quilting. I think you feel even better when you finish a quilt and give it to someone.

You stay on top of what is happening re: medicines, supplements, treatments, etc.

You have developed different kinds of relationships with different people. I think this has made your brain work harder which in turn has made it stronger so that you have the cognitive ability to talk to people other than just your friends and loved ones who have grown accustomed to your speech patterns and usual vocabulary.

Being able to get out of the house and be around other people lifts your spirits which in turn makes you feel better physically.

You have taken on more responsibilities than you had when you were in a fog. When you see the results of your work and/or someone tells you how good you are or how you have helped them, it makes you feel needed, important, and useful.

You have gone from talking in the chat room and asking questions regarding your own condition to posting on almost every topic on the board. This has improved your brain skills because you have had to remember the different situations and people involved.

You have your own groupies; they go to you for advice before they do anyone else. This forces you to concentrate more on helping them than on how you feel.



I hope I'm not too far off and that I have not offended you. I'm sorry I did not get this posted last night. I had a string of phone calls and quite a few prayer requests. I felt they took precedence.

Teressa

P.S. AR I hope this helps answer your question.

Is Mematine something you need a prescription for - I am not familiar with that drug

AR

'Carpe Diem'

Memantine is an Alzheimer's drug currently in clinical trials for HD. It is neuroprotective in the HD mice. Since it's available, a number of neurologists are prescribing this drug for their HD patients and reporting good results with some patients. Memantine is a glutamate stabilizer. Glutamate blockers have been unsuccessful in past clinical trials and that may be because glutamate is such an important neurotransmitter. Memantine regulates glutamate rather than blocking it and that may be a better way to deal with excitotoxicity.

Oh thanks for answering for me Marsha, i've been sick in bed for few days. Yes Andy, it is by prescription, i went to my HD clinic, and asked my hd psychiatrist if i could try it, and he agreed.

Teressa, that was very kind, to think the things you see and notice about me, that made me really happy. I remember i used to be terrified in the chatroom, and you're right Teressa, in the beginning, it was about my needs, like everyone i'm sure when hd first comes into their life, and then i'm able to make things about others now too. I guess i've come a long way baby lol

Andy, there is more i can tell you and others about me and hd. I was going to do it on the other thread i started, but i think i will do it here instead.

My biggest improvement symptoms wise came 3 years into my hd, because of the memantine. But most don't know the struggles i had before that, with depression and anxiety, and trouble sleeping. Much worse than i am saying. Many times over the years, i have struggled with winter depression, long before hd. And many times i went to the doc for meds, always to be unhappy with the side effects, and facing a stubborn doctor that would not listen to me. So, with hd, came along much worse depression and anxiety. I went to my hd clinic one day and broke down crying, and at this time i was not on any meds. I told the hd psychiatrist i was terrified of maybe needing meds, because then i would no longer be in control, but he would be in control. In my tears he was really nice to me, he said nobody would ever force anything on me, and if and when i was ready for some meds to come see him. I know that he knew i needed them then, but he gave me that freedom of choice that i needed. I have a real fear of not being in control of my hd, and not being in control of my mind. The reason i'm sharing this, is because i wonder if others have these same fears, and so i hope i am helping someone by saying this. For the next few months, i struggled even more, and then it was too much for me. So went to my gp, and we tried yet another anti-depressant, this time an ssri, it threw me right over the edge of insanity. So i made an emergecy appt with the hd psychiatrist. He told me how glad he was to see me, that this was a day he had been waiting for lol He said because the ssri effected me so bad, i am most likely borderline manic depressive. He took me off it right away, and started me on seroquel. I could not believe the difference. I started sleeping like a baby. No more racing thoughts, no more nightmares. Nightmares are something i never had in my life til hd came along. I was finally getting some good sleep. I was feeling happy, not just cus of the med, but because this was the hardest thing i had ever had to give in to, and it was overcoming one of my biggest fears, and i felt i had conquered my fear. I began to feel i was doing something good for me and my hd. When i went back to the hd clinic a couple weeks later, i said i noticed my balance is better, and im not choking on water any more. The hd psychiatrist told me it's because seroquel actually is good for hd, it is one of several medications that actually effect dopamine in a positive way for hd. He said it improves muscle function too, and that was why my balance was better and i wasnt choking on water. For me the biggest relief is the relief of racing thoughts, and i can just be happy and relax. The next thing that was added was effexor, it is an anti depressant. Effexor gives me the get-up-and-go of an ssri, but has anti-anxiety stuff in it, and it works really well with me. Over the years, so many dif meds were tried on me for winter depression, and it wasn't til i went to the best of the best, and was willing to give it a try, that the right meds were found for me, and this has truly given me back quality of life. I hope this helps someone, because i have never spoken of my anti-depressant and mood stabilizer meds til now. It is always noticeable on the forum, if i'm going through a dose change, which happens sometimes, and others that know me good can tell when i'm not well, and when i am well. A year after starting the psychiatric meds, i began the memantine

Barb, Thank you for sharing that info on your anti-depressants, that was very helpful! I will keep that info for future conderations when phd hubby and I go to the Neuro in March. Hubby is not currently on any anti-depressants as wasn't ever depressed but since stopping working and driving...sitting inside all winter as left him down. We didn't want meds that weren't necessary just because...
I'm scared for him to be put on more meds and end up on a med adjustment rollercoaster!

Barb - that for sharing all the details -I know this must have been a very difficult time for you and your obviously doing much better - congrats

AR

'Carpe Diem'

Lizzie, i'm glad my post was helpful to you, and i do understand the fears of starting medications. But for me, getting over my fear, and finding the right meds for me, didn't just "contain" my hd, but have given me a much better quality of life.

Thank you Andy, yes it was a very difficult time that i would not have gotten through without this forum and friends here. I still go through hard times sometimes. A few weeks ago winter depression set in, and my doses always get upped in the winter, and lowered a bit in the summer. I remember a few weeks ago posting, and just saying, is anyone here! And people responded to my need right away, and i also upped my med right away, and within a few days was myself again. My hd doc says i am bi polar 3, which he says means i react to things like ssri's, and med changes, and chemicals, he says bi polar 3 is chemical induced, sensitivity to dif things in my environment. Andy, it was real hard for me to write this and talk about this too, because i have kept this private. But i finally decided that if i've had a fear of meds, and overcoming that has helped me, maybe others would be helped too.