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Huntington's Disease - Need prayers and advice immediately

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Huntington's Disease - Need prayers and advice immediately

Posted by KMD on January 09, 2000 at 13:11:39:

Walt,
Over the holidays, my Mom became very ill and my brother and I have been scrambling to obtain a diagnosis and possible treatment for her. She was referred to the University Hospital in Salt Lake after a local neurologist could not give a diagnosis (although he did say it looked like possible Alzheimer's or Huntington's). She was seen in Salt Lake, and the neurologist there said he's 75% sure this is Huntington's and he ordered the genetic test, the results of which we will receive back tomorrow. We are so frightened, overwhelmed, and devastated.

I am barely making it through each day right now. I feel sick to my stomach every day, and have lost 8 pounds in one month. When I am not crying, I am numb. For those of you who don't know, Huntington's is a neurological degenerative disease of the worst kind, takes away all of your physical and mental abilities a little at a time over a period of about 15 years and then you die. It is carried on a dominant gene, so an affected parent has a 50-50 chance of passing it on to their children.

Dr. Stoll, I am having a hard time holding on to hope right now. If Mom's positive, then I know she won't be getting any better, only worse and worse. My brother and I will both want to be tested, and I am barely handling this overwhelmingly stressful situation. If I am positive, then I have 2 children who I may have passed it on to. I am already 32, and this disease can start in your 30's when passed on from your Mother. I don't know how to comprehend the devastation I am feeling or what to do. I can't stop myself from realizing that my life may be practically over, if worse comes to worse. My entire dreams for the future shattered.

Please, do you know of any effective ways to combat this, or new treatments, genetic experiments, possible cures through animal trials, anything?? Please give me your best recommendations.

To everyone who reads this between now and noon Monday, PLEASE pray for us. This is so hard.



Re: Huntington's Disease - Need prayers and advice immediately

Posted by
Kyra on January 09, 2000 at 14:03:08:

In Reply to: Huntington's Disease - Need prayers and advice immediately posted by KMD on January 09, 2000 at 13:11:39:


Dear KMD,

Lots of love and prayers to your mother, you, and your family. Keep us all posted as to what happens.

Love, Kyra



Re: Huntington's Disease - Need prayers and advice immediately

Posted by Walt Stoll on January 10, 2000 at 16:29:46:

In Reply to: Huntington's Disease - Need prayers and advice immediately posted by KMD on January 09, 2000 at 13:11:39:

Hi, KMD.

The advances in the world medical literature of what can be done to slow down and prevent degenerative neurological conditions has been astounding in the past 2 years. Huntington's Chorea people are genetically susceptible persons who have to do a lot of that prevention stuff (certainly more than an average person) and they STILL may have this happen at a much later date. Even with what is known right now, there is little doubt that the condition could be delayed for 20 years beyond when it happens "naturally" in those genetically susceptible people.

EVERYONE in the family needs to be tested if your mother's test is positive since the earlier the preventive stuff is started the more effective it will be.

If her test is positive, let us know so I can point you in the direction of where the information is located. Even if your mother's test is negative, it STILL is in the catagory of degenerative neurological diseases and she would still benefit from that information.

Walt



Test result is positive - WALT WALT WALT WALT WALT WALT

Posted by KMD on January 10, 2000 at 19:45:59:

In Reply to: Re: Huntington's Disease - Need prayers and advice immediately posted by Walt Stoll on January 10, 2000 at 16:29:46:

I am in shock. Just found out. Please tell me what to do. I need some direction, some hope, something.



Re: Test result is positive - WALT WALT WALT WALT WALT WALT

Posted by Straw on January 10, 2000 at 22:31:29:

In Reply to: Test result is positive - WALT WALT WALT WALT WALT WALT posted by KMD on January 10, 2000 at 19:45:59:

You and your family are in my prayers and if anyone can help you, it is this fine physician here. You may or may not have read my posts, but Dr. Stoll has helped my child improve (dramatically in 4 days & then a little better each suceeding day since then). He helped me and did what 3 pediatric neurologists, 1 psychiatrist, 3 developmental pediatricians, 1 regular pediatrician, 1 nutritionist, 1 psychologist (I think that's all the specialists we've gone to) and 25 to 35 books on the subject (diagnosed with severe ADHD & possible other things, we are not sure of).

Just wanted to give you support, love & prayers.

Straw



Re: Huntington's Disease - Need prayers and advice immediately

Posted by KMD on January 11, 2000 at 12:48:04:

In Reply to: Re: Huntington's Disease - Need prayers and advice immediately posted by Walt Stoll on January 10, 2000 at 16:29:46:

What if I think I already have symptoms? Then would it be too late for me to turn things around? I want to be tested but I am so scared to hear the results. I need to find out how I can participate in a genetics experiment for a cure if I test positive. I know they are doing a lot with mice and fruit flies with this disease, and learning about how to stop or dissolve the Huntingtin protein, or how they can alter the genes themselves. What can I do to speed this process up? If humans in desparation want to be guinea pigs, then can't scientists allow them? As far as my Mom goes, it is only downhill from here for her unless a miracle comes along. I am sitting here wondering if I am going to get to watch my 2 boys grow up, or ever be a grandmother myself. If I have this, and it is already onsetting, how do I stop myself from resigning that my life is over?? I might try your health coaching service so I can call and talk to you on the phone...



Re: Test result is positive - WALT WALT WALT WALT WALT WALT

Posted by Walt Stoll on January 11, 2000 at 13:09:07:

In Reply to: Re: Test result is positive - WALT WALT WALT WALT WALT WALT posted by Straw on January 10, 2000 at 22:31:29:

Thanks, Straw, for the kind words.

This is not rocket science (I hope RocketHealer Jim will allow me.) The problem is that we physicians are not taught to think like this. It takes being willing to step outside the trees so we can see the forest---and be willing to risk losing our licence for thinking this way---to do what some people consider miraculous.

Namaste`

Walt



Re: Test result is positive - WALT WALT WALT WALT WALT WALT

Posted by Walt Stoll on January 11, 2000 at 13:22:04:

In Reply to: Test result is positive - WALT WALT WALT WALT WALT WALT posted by KMD on January 10, 2000 at 19:45:59:

Hi, KMD.

This is bad news, indeed. It is not hopeless. It IS hopeless if only the simplistic allopathic paradigm is utilized.

First, you need to get every member of the family tested!

While you are doing that, contact David Perlmutter, MD in Naples, FL at (941) 649-7400. He is one of the most advanced physicians in the field and can at least point you to where you can learn about the most things that everyone positive can do to delay the onset of this terrible problem.

Finally, contact Functional Medicine Update and ask them for all of the 12 tapes for 1999, along with their accompanying printed material. Some of this is pretty technical stuff but it will give you a lot to think about and to ask of any advanced physician anyone might see. It will cost you about $300 but will be WELL worth the investment. You very well may decide to subscribe for a few years since the advancement in this area has been accelerating every month for the past 2 years.

Let us know what you learn.

Walt



Re: Test result is positive - WALT WALT WALT WALT WALT WALT

Posted by Walt Stoll on January 11, 2000 at 13:45:50:

In Reply to: Re: Test result is positive - WALT WALT WALT WALT WALT WALT posted by Walt Stoll on January 11, 2000 at 13:22:04:

Sorry!

I forgot to give you the phone # of FMU. It is (800)843-9660. They also have a website but your best bet for this would be to call. It is www.healthcomm.com

Walt



Re: Test result is positive - WALT WALT WALT WALT WALT WALT

Posted by Straw on January 12, 2000 at 13:15:43:

In Reply to: Re: Test result is positive - WALT WALT WALT WALT WALT WALT posted by Walt Stoll on January 11, 2000 at 13:09:07:

Oh, and I forgot one, a Pediatric Gastroenterologist.

To be fair, she did spend nearly 40 minutes answering my questions about how & when food was digested & how long it took through which part of the body. So, that one was at least somewhat of an education. And, if she hadn't prescribed flagyl, I never would have done a search on flagyl & found this site! :D

Straw



Re: Huntington's Disease - Need prayers and advice immediately

Posted by Walt Stoll on January 12, 2000 at 17:19:09:

In Reply to: Re: Huntington's Disease - Need prayers and advice immediately posted by KMD on January 11, 2000 at 12:48:04:

Hi, KMD.

Health Coaching might not be a bad idea with the kinds of questions you have here.

First of all, if your house is afire, you had better know it if you expect to DO anything about it.

You will suffer a lot more wondering, and waiting for the other shoe to drop, than if you know. Terror of the unknown is ALWAYS worse that the real thing. The earlier you know the earlier you can start doing something about it!

ONLY if there were NOTHING you could DO about it might it be rational to consider not knowing! Since there is a lot you can do, AND the sooner you start the more you can help yourself, it only makes sense for you to know ASAP. Even your mother would be helped, at this late stage, IF you can get her to do what will help. This is NOT a magic pill but a major lifestyle and paradigm shift she (or you) would need.

GET EVERYONE TESTED!

Next, you need to look at it this way: no matter what, it will certainly help you to improve the fertility garden in which your brain grows as much as you can. Even for Huntington's, this is the first line of defence.

How old are you? Have you read about when this problem normally occurs? How old was your mother when she started showing symptoms?

Walt



Jan. 12 - Answering your questions - please read Walt

Posted by KMD on January 12, 2000 at 22:46:54:

In Reply to: Re: Huntington's Disease - Need prayers and advice immediately posted by Walt Stoll on January 12, 2000 at 17:19:09:

Hi, thanks for responding...AGAIN. My Mom is 56 years old, and looking back I would say she had some onset as far back as 9 years ago. Her own mother also went through this, with severe symptoms beginning in her 50's, and the doctor's not knowing what it was (they called it paranoid schizophrenia, and then Alzheimer's, but it wasn't!)

I am 32 years old, and according to my research, IF I test positive for HD, and SINCE it would be coming from my mother, onset is expected anytime between the ages of 30-45 (NOT good news).

You may or may not know, that they will not test minors under the age of 18 years old... My 2 sons are 9 and 3 (almost 4, this is the one with autism). So when you say to get the whole family tested, that really just means myself and my brother (my only sibling). He is going to be tested this month (difficult situation, resides in Singapore but is currently in the states with my Mom, trying to get her situated with the care she needs, trying to get to Salt Lake and back twice for his own testing).

As for me, my husband is in the military and so I have to start at the bottom of the chain with an appointment in Primary Care (made one, soonest I can get in is the 21st), and that's when I will request a referral to the Mayo Clinic here for the testing process. I agree with you, not knowing is the worst stress of all.

I have contacted the local chapter of the Huntington's Society of America and will be attending a meeting on Saturday. I have also tried to get an appointment with a psychologist (they didn't call back). I am not thriving emotionally or physically at all, I am crying off and on about 10 times a day and often feel extremely depressed, nausea too, can't hardly stomach any food, and have dropped 10 pounds since this all started at the beginning of Dec.

I would like to take you up on the health coaching. Please tell me what I need to do and an estimate of the cost. Thank you for spending the time to help me. I want you to know that I ordered your book in November, and have been reading it a second time and taking notes. I was impressed and pleased to see that it is autographed, and I was wondering if you have autographed all your books (or am I special??)

As far as my Mom, I will offer her the wellness information but I honestly don't see it happening with her. She smokes a pack a day at least and has never in her life exercised, nor does she eat well or have any interest in meditation... unfortunately I don't know if she would be open to any of this.

What a painful experience this is, I need all the help I can get right now.



Re: Jan. 12 - Answering your questions - please read Walt (Archive under Brain.)

Posted by Walt Stoll on January 13, 2000 at 13:28:49:

In Reply to: Jan. 12 - Answering your questions - please read Walt posted by KMD on January 12, 2000 at 22:46:54:

Hi, KMD.

I am astounded at the short sightedness of any rule avoiding testing children. Of course, a few years ago, when there was nothing anyone knew to do, I guess it would make a kind of sense. Now-a-days, when a lot can be done to delay this problem, waiting to practice CNS wellness till the person is 18 is UNCONSCIONABLE. The earlier things are changed the more can be done.

We have not known what to do (and still have a lot to learn, is MY guess) to know how long we can delay the onset---even prevent it altogether---until large numbers of people have done it for 30 years. All we know for sure is that it is effective and cannot hurt anyone; while improving the quality of life while it is being done no matter what the diagnosis.

However, until the medical profession comes to their senses, wellness cannot hurt and actually will help anyone whether they have the Huntington's gene or not. Until children are old enough to make their own decisions, wellness is what should be taught, and practiced, at home.

There is no reason why you cannot start this even before you know your own results! You have nothing to lose and everything to gain. At least you will not feel so helpless. It has taken me 40 years to learn what I know about this. no matter how hard you study, you will still be learning how to help yourself 10 years from now.

As you learn, ask any questions on this BB so others can learn at the same time.

By the way, smoking is one thing that has been known (for many years) to bring Huntington's on about 10% faster than it would have come on anyhow. With your family history, you probably have at least 10 years yet to do something to delay it further--unless you worry yourself into it! Worry, at the level you are describing, is a well known aging agent----EXACTLY the opposite if what you want to do!

I wonder if your mother, had she known of her diagnosis, would have foregone smoking all these years?

As you describe your mother's attitude, there is likely nothing that can be done for her. Actually pushing her about it would likely cause more stress than benefit. She is deciding how she will live and, now, how she will die. Everyone has a right to do that. Unfortunately, many times the family is also penalized for those unhealthy choices.

Just love her as she is. You have a lot more to gain by doing this than she would at this late date anyhow. Put your efforts into yourself and your example will do more to change those around you than anything else could. This will be a lot less painful for you if you can let your mom go with this at least until you get yourself in hand. THEN, you would have more energy for her anyhow. By then, your obvious health will be impressing everyone around you. If your mom has any awareness of her surroundings it may even stimulate her to do what you did. Hope springs eternal!

I have autographed all of my books but most are autographed differently.

Go to the link to Health Coaching on many of these pages. All of the information you are asking for is in that protocol.

Hope this helps.

Walt




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