Cryopreservation

Status
Not open for further replies.

jethro

Distinguished member
Joined
Nov 2, 2017
Messages
234
Reason
PALS
Diagnosis
09/2017
Country
HR
State
Croatia
desperate, just like everyone on this forum, i'm trying, trying... bureaucracy, science, time... everything is against us. what knocked me down is one scientist's sentence: "it is terrible to see patients dying faster then mice".
time is crucial thing.
my body is a weaker on a daily basis.
so, no cure/treatment by now, let's exchange cards! let
TIME to be target!
as everyone read, nurown wont be available for most members in this forum.
if i really don't have nothing to lose except my cheap life, i have money, but nothing can sell me health, searching through web i found possibility for criopreservation for a terminally ill people. there are three locations on earth where it can be done. in two, as you can guess, they accept only US citizens; michigan, arizona and one is russia. i have money, crazy ideas, one big, fat mouse to experiment and that's all i have. just contacted russia site. no answer until monday. or i should die first 'cause they don't accept living patients?
*i knew there is a catch. first, you must die before that, cause they dont do that with living "patients"
BUT
you can do it in switzerland, legaly, with DIGNITAS, but you have to pay additional and combine dignitas and CRYO. as soon as i find details, i'll put it here.
anybody thought about this chance after no chances?
 

TIANDB

Active member
Joined
Jul 5, 2018
Messages
40
Reason
PALS
Diagnosis
06/2018
Country
Uni
State
Derbyshire
Hi Jethro.
The organizing would be interesting at least the two places are on the same continent. The cost would be high but as you say wealth is not much use if you cannot use it while deteriorating. One thing to consider any ALS help from medication at the current time does not improve your muscle wastage. So if you come back it would be at the level you are or will be. Also you would have to research the drugs used in Switzerland would they be compatible with CYRO ? Would it be allowable ?
I wish you well brother, I accepty my demise but am still hoping .. Take care TIANDB
 

jethro

Distinguished member
Joined
Nov 2, 2017
Messages
234
Reason
PALS
Diagnosis
09/2017
Country
HR
State
Croatia
@tiandb r.bedlack says that he count 24 reversals. depending on number of all pals in the world, it seems that reversals occure 1:7000-20000. still more often then it actually occurs (2:100 000). i'm writing about average. all of us here hope. including me. just like you are running through mine field. automatically you run with closed eyes and hands over your ears.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,452
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Jethro, I feel your pain and totally appreciate and understand your quest to do whatever you can to beat this disease.

In the meantime, it would be a worthwhile use of your time to seek interventions and activities that conserve energy and enhance your quality of life. All the standard stuff we talk about on the forum —e.g. use of power wheelchair, BiPAP machine, feeding tube (when the time comes). Also, spending time with people that matter to you, going to places you like, finding activities you can still do that you might enjoy.

I wish you the best.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,592
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
As yet, not one person has been successfully revived from cryo, least of all someone with a progressive and fatal disease.

As yet, thousands of PALS have improved their lives with the interventions, boring as they are, that we talk about all the time, as Karen mentioned.

Your money, your life, your choice.
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
922
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
I have a book you need to find. The Timekeeper by Mitch Albom. The same guy who wrote Tuesdays with Morrie. Actually both books are considered must reads for people with ALS. The first book looks at things like cryo- preservation, the second deals directly with the author's friend with ALS. You may disagree with his opinions, but it will give you one perspective.
Vincent
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,399
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Jethro,

I like that you think out of the box. I just don't think cryo is advanced enough to even give us a chance.

Meanwhile, we all hope to find something that will slow our progression. I know people who have survived for 15 years without invasive ventilation. If you have enough money, you can afford invasive ventilation and caregivers.

I've been taking curcumin for two years with plans to keep taking the brand I'm taking and adding the brand Bedlack is using in the study. It's not a huge dose.

During the first year after my diagnosis, I scoured the Internet to find people who survived this disease long term. Most of them took a bunch of supplements, got lots of sun, stayed as active as possible....some even lifted weights and did hours of exercises every day. They ate clean and had a positive attitude. Who knows if they really had ALS or some mimic.

No matter what you decide, it has to be right for you. Hard choices for all of us.
 
Status
Not open for further replies.
Top