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Just started Aricept - Any news for a new cure?
July 25, 2001
5:57 am
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hihope
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My wife (47yrs old) has just been diagnosed with an early stage familial AD. She just started Aricept treatment which is already showing very encouraging signs. Knowing, however that this is only a temporary treatment, we need to be on the lookout for any new cure. We saw many doctors: As aresult we have many different options:(1-possibly not AD but could be any other neuro-degenerative disorder,2-early AD but Aricept will continue to help for a long time,3-will only work for two moths to two years but a vaccine will become available in two years time,4-there is a possibility for enrolling in a vaccine trial now...etc.)Being desperate I am willing to go for the option of trying the vaccine right away. Can anybody help me with information regarding the availability of AD vaccine centers any where in the world, and how to go about enrolling in one before it is too late?

If you have any views or opinions regarding this matter please feel free to write. Any contribution will be highly appreciated.

Thank you all.

hihope

July 26, 2001
12:14 am
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Alena
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I'm sorry, I really know nothing of any AD centers but I did want you to know your plea was heard. My only suggestion is that you just search the Net using AD centers as your search. Surely you can inquire with your wife's doctors. And another thing, you may find a number of support groups for AD also on the Net. I can only offer you my prayers and good wishes for you and your wife and family. My heart goes out to you. Maybe someone else will have more to offer, if I hear of anything or find anything for you, I'll let you know.
Good Luck.

July 26, 2001
10:30 am
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Alena
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hihope, I found these sites this morning, perhaps they will be of some help.

http://www.ohioalzcenter.org
This is from University Hospital in Cleveland, Ohio, a major research center.

http://www.alzheimers.org

and

http://www.alz.co.uk/
this is an international site

I don't know where you are located, but maybe one of these will help.

I still believe your best bet would be to talk to one or all of the doctors your wife has seen. Is the option of the experimental drug still an option if the diagnosis is not AD for sure? Would more tests help solve the problem? It sounds as if you need to see a reputable neurologist (I'm sure you have!) and go with his line of tests. But the websites may help you, as the caregiver, they may direct you where and how to get to an answer.

Keep us posted, good luck, hugs to you and your wife..

July 29, 2001
4:54 am
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hihope
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July 29, 2001
5:00 am
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hihope
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July 29, 2001
5:36 am
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hihope
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Alena,I apologise for not responding immediatly,but I was not able to get to the computer the last few days.

I am so touched that there are still people good like you around. I have never talked about this subject to anybody except the doctors. Not even to my children. They started to notice, I told them that it is due to the high blood pressure. I do not want to make their life mesirable because of the familial connection, especially since ther is no known cure.I do not know if I am doing the right thing?

As for talking to the doctors,I did of course,and I did went with whom I thought made the most thourough investigations. This same doctor was the one who offered to try to enroll my wife in the vaccine trial, but he did worn me that there are priorities.Due to this uncertainty I wanted to be ahead of the game and look for an alternative.

Thank you very much the internet sites information, I will look them all up.

Please keep in touch it is very heeling.

July 29, 2001
5:37 am
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hihope
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Alena,I apologise for not responding immediatly,but I was not able to get to the computer the last few days.

I am so touched that there are still good people like you around. I have never talked about this subject to anybody except the doctors. Not even to my children. They started to notice, I told them that it is due to the high blood pressure. I do not want to make their life mesirable because of the familial connection, especially since ther is no known cure.I do not know if I am doing the right thing?

As for talking to the doctors,I did of course,and I did went with whom I thought made the most thourough investigations. This same doctor was the one who offered to try to enroll my wife in the vaccine trial, but he did worn me that there are priorities.Due to this uncertainty I wanted to be ahead of the game and look for an alternative.

Thank you very much the internet sites information, I will look them all up.

Please keep in touch it is very heeling.

July 29, 2001
10:52 am
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Alena
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hihope, how old are your children?

I can't say that I totally understand how you feel, because I don't have a spouse with AD, but I can only imagine how earthshaking that diagnosis can be. In my case, my children are adults and I would tell them. I think even if they were much younger, I would tell them. It isn't something you can hide, and you need to be able to work with this disease in an open fashion, not hiding, not being constricted in any way. It has to be much healthier for all involved to face it and work together in helping wife and and whole family deal with this and it's treatments. Do you think? That's how I see it. Unless you have very young children, that's a different story. You have enough to bear, wouldn't it be better to let everyone deal with it in their own way? Again, just my thoughts, just how I'm pretty sure I would do it. I know from everything I've read, the stress on caretakers is overwhelming. My father in law cared for his darling wife with Parkinson's at home, till the day she passed, and then he passed away 2 years later. This was a long time ago, before all the breakthroughs, but he was under enormous stress, emotionally hanging on by a thread. He needed all of us to pitch in, and not only that, someone to talk to for him.

My guess is, it would help you and your wife if you could talk to a close family member, friend, clergy, counselor...??.......you shouldn't try to deal with it all by yourself.
I hope the sites have something good for you.

Keep up posted when you can, somebody is usually here, different time zones and all, being here in the east, I'm usually one of the first ones up!

Take good care...hugs...

July 29, 2001
5:33 pm
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hihope
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Alena, the eldest is 23 and the youngest is 7.

Knowing how loving and sensetive my children are I still believe that telling them will affect their studies and will cause them an immotional scar too early.I want them to enjoy life and not live worring about their futre possibilities.I made a good effort letting them know that their mother needs special care and that she is having problems with her brain due to the high blood pressure, and I made it clear to the older ones that the desease is degenerative but medication can arrest or reduce the decline untill research comes up with something.So this way,I feel, they know about the problem with reasonable details without the burden of knowing its relation to them genetically,especially since there is nothing at hand now that can be done.Therefore I still strongly feel that there is no point in telling them.

Researchers are uncovering many of the misteries of this desease and from what I read more effective treatment and/or a cure could become available in the near futre.

We need your prayers.
Thank you

July 29, 2001
7:25 pm
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Alena
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Hihope, I absolutely agree with you. I'm glad to hear you're okay with the kids, and it sounds as though you've done the right thing for your family.

From what I've heard lately, there are some new meds that look promising?

What exactly are the "priorities" in trying to get into a research program?

July 30, 2001
5:25 am
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hihope
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Alena,I am glad you agree with my approach.

My priority is to get her into a vaccine programe, because vaccine treatment is in an advance stage - beyond research.All the reports I`ve read and heard about it so far indicate that vaccine will be affective and safe for human.I would like to enroll her in a final trial program. Approval by the FDA may take too long.

The good news,for now, is that my wife is responding wondarfully to Aricept. The kids and I can see that the most beautiful person in the world is coming back to us. You can not immagine how wonderful to see her doing things around the house and remembering her appointments and medecine like she used to.

Thanking you for being so gentle and understanding I remain.

Please keep in touch.

July 30, 2001
7:20 pm
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Alena
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Hihope, I am so happy to hear your good news!! After a very long day here, yours was the first post I went to and lo and behold, you made me feel pretty good!! It's so wonderful to read the joy in your words about your "most beautiful person"... I think you must be a very beautiful person too, hihope.

You know, you've actually motivated me to go see what I can read and learn about his disease.

And, may I say, just the name you picked, "hihope" speaks volumes about you and your dear family.

Take care, hugs,

July 30, 2001
10:26 pm
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Alena
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In browsing through the AD sites, I came upon this page which lists the research sites nationally and internationally...hope it helps.

http://www.ohioalzcenter.org/l......html#ADRC

July 31, 2001
5:44 am
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hihope
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Hi Alena,
What a coincidant yesterday I was brousing through the same site ! but again maybe not a coincident because you did mention this site to me before that`s why I went to it. The timing, however, could be interesting.

I did find a lot of information but the kids wanted to go to the beach so I bookmarked it. I will go back to it as soon as I send this message. Having looked at so many similar sites I am sort of saturated and the information is becoming sort of repetative with new stuff coming very slowly. Researching the mystery of this disease must be a very slow process.

I will also lookup "www.alz.co.uk" hoping for some information regatding vaccine enrollment centers.

Thank you again for your kind efforts and sympathy.

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