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My grandfather was diagnosed today with ALS (Lou Gehrig's Disease).

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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 07:50 PM
Original message
My grandfather was diagnosed today with ALS (Lou Gehrig's Disease).
For the past year or so my granddad has been losing weight and feeling very lethargic, so it was quite a relief when he had to go into the hospital for quadruple bypass surgery in October. In our medical naivete we assumed that a major operation would be the end of our worries and that hopefully his condition would improve. But after seeing him at Thanksgiving and noticing certain odd behaviors - difficulty buttoning his shirt, stumbling, weakness - we collectively began to worry that something else was afoot. My father convinced his mother to take granddad to have some diagnostic tests run in Houston, and on Wednesday he and my grandmother drove to Houston to do just that.

By early today the test results had come back. My dad emailed me to tell me that granddad had been diagnosed with ALS. That certainly wasn't what any of us expected.

Granddad is technically my step-grandfather, but I love him more than my biological grandfather. A former Union Oil worker, granddad is the best Democrat I've known in my life. He and my grandmother are both evangelical Christians and not by any stretch of the imagination are either of them very intellectual or high-brow. In essence, they are stereotypical red-state people. But they are both the hardest of hard-core Democrats. Perhaps it's the union man in my grandfather or the admiration they both have for the Kennedys and the Clintons. But whatever it is, it makes them cling to the New Deal ideas of the Democratic Party while the rest of the Southern working class goes Republican.

This is going to be tough for everyone in my family. If you know anything about the disease, you know what sort of slow death it produces. It pains me to think that granddad's last years will be spent in a state of gradual paralysis. Such a decent, honest, good man deserves so much better than that. But I know that he knows that when the Lord calls you, you've got to go, no matter how rough the road is.
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asthmaticeog Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 07:52 PM
Response to Original message
1. God, Fen, I'm really sorry to hear that.
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 07:54 PM
Response to Reply #1
3. Thanks, man.
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greatauntoftriplets Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 07:52 PM
Response to Original message
2. I am so sorry to hear about your grandfather, Fenris....
My best to you and your family, there is not much more anyone can say....

How old is your grandfather?
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 07:54 PM
Response to Reply #2
4. He is 76
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NC_Nurse Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 07:55 PM
Response to Original message
5. I'm so sorry, Fenris...
Edited on Fri Dec-10-04 07:55 PM by NC_Nurse
I hope the progression is veeerrryy slow. He will know that those who love him are there for him and that means so much. I pray for strength for him and those who will be supporting him.
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DeposeTheBoyKing Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 07:57 PM
Response to Reply #5
8. I'm sorry to hear this news
That is a devastating diagnosis. My prayers and thoughts are with you and your family.
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:00 PM
Response to Reply #8
14. Thank you, DeposeTheBoyKing
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 07:59 PM
Response to Reply #5
13. Thank you, NC_Nurse
I hope it is slow as well.
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MadAsHellNewYorker Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 07:56 PM
Response to Original message
6. My grandfather had it as well...
I never got to meet him, but I'm named after him. Im really sorry you got such bad news.

my thoughts are with you and your family.
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:00 PM
Response to Reply #6
15. Thanks, MadAsHellNewYorker
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candy Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 07:56 PM
Response to Original message
7. Lord,that's tough. Prayers for your grandfather.
Edited on Fri Dec-10-04 07:57 PM by candy
Curt Schilling of the Boston Red Sox is very active in ALS research fundraising.
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:01 PM
Response to Reply #7
17. Thank you, candy
Schilling is mentioned on the ALSA homepage.

http://www.alsa.org/
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qanda Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 07:57 PM
Response to Original message
9. So sorry
I'll keep your granddad in my thoughts and prayers.
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:02 PM
Response to Reply #9
18. Thank you, qanda.
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Lady Effingbroke Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 07:58 PM
Response to Original message
10. I am sorry to hear that, Fenris.
Prayers and :hug: for you and your family. It sounds like your grandfather is a wonderful man.
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:02 PM
Response to Reply #10
19. Thank you, Lady Effingbroke.
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KlatooBNikto Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 07:58 PM
Response to Original message
11. I am very sorry to hear about your granddad.My best friend died
after a long fight with this disease about ten years ago.He was in his mid fifties.All I could see was the progressive detrioration of one function after another in his body except his mind.For someone who was so active throughout his life the loss of muscle function was a blow.

I understand that Merck has applied for approval for a drug to arrest the ravages of this disease.If you can connect with the right people there, you may be able to get your gradpa into a reserach program for this drug.Good luck to you all. And God bless your granddad.
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:03 PM
Response to Reply #11
20. Thank you, KlatooBNikto
I'm sorry you had to go through that with a friend, especially that young.
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AllyCat Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 07:59 PM
Response to Original message
12. I'm so sorry to hear that.
Has his doctor been able to offer much help as to how to manage it? I'm not familiar with the current research on this disease.

Your grandfather, you, and your family are in my thoughts and prayers.
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:04 PM
Response to Reply #12
21. Thank you, AllyCat
The details of his treatment are rather sketchy right now. I think they're just trying to get over the shock.
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latebloomer Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:01 PM
Response to Original message
16. That is so sad, Fenris
He sounds like a wonderful man.

Love and strength to you and the family-

:hug:
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:05 PM
Response to Reply #16
22. Thank you, latebloomer
:hug:
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lumberingbear Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:12 PM
Response to Original message
23. I'm sorry Fenris
It is so sad that people have to go through debilitating diseases.

(I had to redo my mother's buttons today and tie one shoe. I took her to the doctor today and she must of asked me 50 times where we were going. She has Alzheimers)

I really feel for you and your family, as well as your grandfather.

:cry:

:hug:
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 12:45 AM
Response to Reply #23
33. Sorry to hear that man.
ALS is like the reverse of Alzheimers. The mind stays sharp, but the body goes.

:hug:
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CBHagman Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:20 PM
Response to Original message
24. Fenris, I am so sorry.
Edited on Fri Dec-10-04 08:27 PM by CBHagman
Please tell your family we'll have them in our thoughts and prayers.

My uncle had ALS, but that was more than 30 years ago, when medicine was in a completely different stage. I certainly hope the doctors can do more now for your grandfather. My uncle had trouble speaking, but he did teach up until the end of his life (he was a college professor).

This is one disease I'd love to see a treatment for, but I don't know which organizations are reliable in terms of research. If any DUers have thoughts that way, let me know.


On edit: Just saw the website listed above and below.

www.alsa.org
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 12:47 AM
Response to Reply #24
34. Thank you, CBHagman
Amazing that your uncle was able to teach with it. Strange disease.
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AlCzervik Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:25 PM
Response to Original message
25. You and your Granpa will be in my thoughts
I'm so sorry to hear about this, and your Granpa sounds like a really wonderful person and and great influence on you. :hug: :hug: :hug:
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 12:48 AM
Response to Reply #25
36. Thank you chimpsrsmarter
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Sanity Claws Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:30 PM
Response to Original message
26. Sorry to hear about it
NPR had a report this morning about some experimental treatment for the disease in China. The disease is awful.

Was your grandfather very athletic in his younger days? There seems to be some link between high performing athletes and this disease. What an irony.
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 12:50 AM
Response to Reply #26
37. Thanks, in search of sanity
I'm not sure about his earlier years, but I'd imagine he was pretty athletic.
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Gothic Sponge Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:34 PM
Response to Original message
27. I'm so sorry, Fenris.
I lost both my grandparents to alzheimer's. I'm wishing the best for your Granddad.




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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 12:51 AM
Response to Reply #27
38. Thanks, Gothic Sponge.
Both Alzheimers and ALS have similar conditions, only in reverse I suppose.
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babylonsister Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:45 PM
Response to Original message
28. Fenris, that is bad news, and you have
my sympathies. There are many diseases out there, and this one is brutal. Cherish every moment together from here on out.
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 12:52 AM
Response to Reply #28
39. Thank you, babylonsister
I will cherish every minute with him.
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Pale Blue Dot Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:50 PM
Response to Original message
29. My heart's going out to you, Fenris.
He needs your love now more than ever. Stay strong, and don't forget to take care of yourself and your feelings, too.
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 12:52 AM
Response to Reply #29
40. Thank you, Finnfan.
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HysteryDiagnosis Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 08:51 PM
Response to Original message
30. Link
http://www.lef.org/protocols/prtcl-008.shtml

Whilst the medical community at large may not have a clue as to how to strengthen the body's own innate healing and protective systems... that doesn't mean that there aren't ways (very good ways) to improve the odds or slow the progression...

One ALS patient that I know of was flown to Texas to receive a regimen of glyconutrients to the tune of 8 tblspoons per day.. (cost prohibitive) and today he is symptom free. For loss of a way to give you such an amount of that particular product, I give you the above link....
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 12:53 AM
Response to Reply #30
42. Thank you for the info, 4MoronicYears.
I'll pass it along to my family.
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HysteryDiagnosis Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 08:03 AM
Response to Reply #42
50. I know that I may sound unjustifiably optimistic.... however I have done
extensive reading on this issue.... I met a man in Fort Pierce Florida who was down and out with ALS, he was up in years as well... and he was back on his feet. I feel that the chapter on ALS in this book was well written... the author is a board certified neurologist... and the co-author is an expert in the field of nutritional interventions for degenerative conditions. Please check it out....

http://www.amazon.com/exec/obidos/ASIN/1575662930/qid=1102769489/sr=2-1/ref=pd_ka_b_2_1/104-2713864-0948747
Reviewer: Robert Crayhon (Reno, NV United States) - See all my reviews
(REAL NAME)
Treating and preventing neurodegenerative diseases is difficult, but as a practicing clinician, I know that optimal nutrition can make an enormous positive difference in the course of the disease. This is an excellent book, and is must reading for anyone with ALS, MS, Alzheimer's or Parkinson's Disease. It is also an excellent book for those who want to maximize their brain wellness with optimal nutrition. Congratulations, Jay and Carl, on a superb contribution to the field! Robert Crayhon

Reviewer: eyal - newman (tel-aviv, israel) - See all my reviews
(TOP 1000 REVIEWER)
The generative diseases (in this case neurological diseases), from parkinson, to altzheimr, a.l.s, and others like c.f.s are coverd in that book with the latest medical, and the nutritional (plus supllements) views. The authors are both doctors. one of them is a neurologist and the other is a docter and a clinical nutritionist, that both with their simple yet complex explanations put a remarkable views of healling about the degenerative diseases and shows the benfit of the long term healling with nutrition and supllemnts. the roots of the diseases are discused very interstingly and it is a very informative book. i do have one comment about that book: that they givven amount of vitamin C in those specific diseases (degenerative neurological diseases), should be much higher, but beside of that it's the best natural book that dealing in one copy on the brain wellness plain against degenerative diseases. i know what i'm saying because i'm dealing with those diseases with my patients.

Reviewer: Dr Tedde M. Rinker (Burlingame, CA United States) - See all my reviews
(REAL NAME)
While this book may be a bit loaded with biochemistry for the tastes of the average reader, it is an excellent book if you want to understand how the brain works best and what kinds of supplements, vitamins and nutients will help keep it functioning well. It is a good review for anyone in the medical field too, especially those wanting to provide a balanced integrative health approach to their family or general practice.

The most important point is preventing degeneration of brain function over time, and while it will appear complex at first, attempting to understand and apply it could save your brain and keep you out of a long term care facility in the future.


Also.. the glyconutrients I mentioned, basically sugars... very special sugars used in the formation of glycoproteins that enable cell to cell communication... the benefits seen in FAS children... has been attributed to the body's own ability to recruit its own stem cells... apparrently (sp) enabled by the use of glyconutrients.

The Fisher Institute has papers on the use of glyconutrients in FAS children explaining the stem cell issue... you may want to take a look at that.... best wishes...

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flamingyouth Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 09:06 PM
Response to Original message
31. I am so sorry, Neil
Ever since you told me this news earlier today I've been thinking about you and your whole family. I know you've all had a really rough year.

I love you very much and will of course be keeping you all in my thoughts. I love you. :loveya:
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 12:54 AM
Response to Reply #31
43. Thank you, love.
:)
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GOPisEvil Donating Member (1000+ posts) Send PM | Profile | Ignore Fri Dec-10-04 09:08 PM
Response to Original message
32. Aw, damn...thoughts and best wishes to your family.
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 12:55 AM
Response to Reply #32
44. Thank, David.
:hi:
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Magrittes Pipe Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 12:48 AM
Response to Original message
35. Neil....
You a straight-up G. And I know any family that could produce the likes of you must kick much ass.

Honestly, brother, you and yours have got my best wishes. :hug:
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 12:55 AM
Response to Reply #35
45. Thanks, Vince.
:hug:
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ChavezSpeakstheTruth Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 12:53 AM
Response to Original message
41. Much love and prayers Fenris
I hope you have the comfort of the past to help you through the present.

- Peace

Josh
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 12:56 AM
Response to Reply #41
46. Thank you, Josh.
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dolo amber Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 12:58 AM
Response to Original message
47. Awww geez Fen..
:cry:

:hug: for you and your family... you know I'm always here for you if needed... :(
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Fenris Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 01:16 AM
Response to Reply #47
48. Thanks, D.
:hug:
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Valerie5555 Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 01:40 AM
Response to Original message
49. 1 x or ex captive in the Iran hostage drama had that or WILLIAM KEOUGH as
I recall, not sure how long he had that for but he since died in 1985.


Was sure Stephen Hawking who also has that is one of the lucky ones in terms of longevity and such.
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Donkeyboy75 Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 08:26 AM
Response to Original message
51. I'm very sorry to hear this.
My thoughts are with you and your family. :hug:
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Misunderestimator Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 08:37 AM
Response to Original message
52. So very sorry, Fenris...
Edited on Sat Dec-11-04 08:37 AM by Misunderestimator
That seems unusual for someone that age to be diagnosed with ALS. That's really awful news. Your grandfather seems wonderful ... how lucky for you to have had him in your life. My thoughts and prayers are with your family. :hug:
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Bunny Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 09:49 AM
Response to Original message
53. That's some tough news, Fenris.
I'm very sorry and I hope the rest of the journey for your Granddad is as peaceful as possible. My thoughts are with you and your family. :hug:
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jus_the_facts Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Dec-11-04 10:21 AM
Response to Original message
54. My thoughts are with ya'll......
....I know how hard it is to face this sort o'thing...my dad has been dealin' with leukemia for the last two years and it's so very difficult to watch him deteriorate....thought we'd lost him a few weeks ago but he pulled out of it once more and is still fightin' it...they'll be goin' to Baylor the week of Christmas to do testing for a bone marrow transplant. *fingerscrossed*

Take care m'man and I'm truly sorry for you and your family!!
:loveya:{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}:loveya:
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