Mixed feelings on husband starting Deanna Protocol

[Megan Dontain]

Happy New Year everyone,

As some of you know my husband was diagnosed with ALS 3/2014 and given the standard 2-5 years to live. It is still unbelievable now even after 9 months. He is 32 years old. Now, not that this horrible disease has a specific mold, race, type, age or look...I would just like to give you a little perspective on my own personal journey through this. As I said before my husband is only 32 and grew up in southern California. If any of you are familiar with dirt bikes and motor cross, there is this riding group called the Metal Mulisha. They are extremely talented on their dirt bikes doing incredible stunts, they are also covered in tattoos. My husband looks like that. He has tattoos from his neck down to his ankles! And I love them. He rode BMX as young teen and then got a degree in automotive and diesel engines, but eventually became a self-employed commercial contractor. He always been very motivated.
When we got the diagnosis he was resistant to any treatment, not even wanting to follow up with his doctor. He has really started to decline recently and has just now started the Deanna Protocol. He seems hopeful. I've noticed a lot of mixed reviews on here about it and was just wanting some advice. Please help me, thank you....
Megan

 

[MaxEidswick]

>has just now started the Deanna Protocol. He seems hopeful. I've noticed a lot of mixed reviews on here about it and was just wanting some advice. Please help me, thank you....

start w/ alsuntangled and then search here ...

>given the standard 2-5 years to live. It is still unbelievable now even after 9 months. He is 32 years old

that is total bs. there is no 'standard'.

Try to go with the flow, expect fear, anger, bitterness, and a new awareness of life. I have found that being active here on these forums has helped me in way I cannot explain, but you will see.

before trying miracle cures, etc., ask here, go to alsuntangled dot com.

Lastly, anxiety can be debilitating so beware.



Max - Sunday, January 04, 2015 12:14:52 PM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[GregK]

Listen to what Max said.

In addition to als untangled there are first hand reports (for DP and most everything) on Live better, together! | PatientsLikeMe. It's also a great place to track progression.

 

[Barbie]

Megan--is he also seeing a doctor or clinic? or did he just decide to do the Deanna protocol on his own? I don't think the protocol will hurt anything but your pocket book, and I think it may have some benefit, but do not expect cures or miracles...we have all been down that road.

If he wants to try it and not see a doctor, then set a time limit on his experiment and then get in with a good clinic. he will need their help down the road and being an established patient is easier than starting from scratch and already needing equipment.

He is trying to control his life, and you have to give him kudos for that...ALS takes away so much control. try to stay positive for him and be his helpmate while he figures things out. in the mean time, be gentle and loving with your own self.

 

[SMP51]

the only thing it is going to effect is your bank account, so if that is healthy then it wont hurt a thing.
but there are other expensive things your husband is going to need to keep h handle on his quality of life so if your budget is tight .....

other than that I have found this is my husband battle and I am but the support system, cheerleader. He never misses taking a huge spoonful coconut oil 2xs a day and a dropper full of B12. does it help, who knows. Does he feel better cause he is trying to do something....yup.

 

[MaxEidswick]

>other than that I have found this is my husband battle and I am but the support system, cheerleader. He never misses taking a huge spoonful coconut oil 2xs a day and a dropper full of B12. does it help, who knows.

also remember the basic PALS rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins

ALS is about living, not dying!
-----
ok well, we take what we get and be glad for what we have
------

 

[Megan Dontain]

Thank you all for your input. I've never heard of alsuntangled before, I'm interested in what they have have to say. To answer Barbie's question....yes, my husband does agree to see his ALS specialist at Loma Linda University Medical Center every three months or so. His last visit was at the beginning of Dec and he told the Dr he was interested in this Deanna Protocol. His Dr said it was fine if he wanted to try it, that it wouldn't hurt him. He looked at me and said to hope for the best, but be realistic with our time together. The Dr is really pushing for my husband to do the wheelchair evaluation, but I can't get him to do it. He says he doesn't need a wheelchair. I'm really confused on what my next step is supposed to be....

 

[GregK]

Megan,
Encourage him to get active in this forum. Educating himself will yield great benefit.

As to motorcycles: BigMark1954 and myself are Harley owners, so you can toss that out there too.

 

[Megan Dontain]

GregK- I've been trying to get him involved, but he just isn't feeling yet. He has been talking a lot lately of getting a Harley trike so he won't have to worry about balance. It's really cool to know that people with ALS can still get out and ride. That would put a huge smile on his face. Thank you!
Megan

 

[SMP51]

Megan
Steve fought every adaptation, he didn't need X Y or Z yet. it is an admission that there is progress. It is a hard balancing act for us CALS to prepare for future needs while also allowing them to be in charge of their own battle.
*for the bath remodel he said we just needed to get a step stool or something to help him over the tub ledge(OMG! NO!) I got my way saying he might not get worse but neither of us was getting any younger, so lets just do this.
*he has no desire to be on the forum but will read things I cut and email to him
* the wheelchair , hoyer lift and larger equiptment we didn't need yet, well I just had my ducks in a row so it didn't take much to make it happen when he finally gave in
*giving up driving was the hardest. The motorcycle he started having a difficult time shifting(lost his feet/legs first) when he put it on it's side in the drive way because his leg failed he decided to sell it. The car was harder to give up.
sopping wet from loading and unloading the wheelchair in a rain storm, I told him "we" may not "need" a wheelchair van yet but "I" WANT one!

copy and send Max's PALS basic rules and send them to him. they really are the golden rule of staying healthy and whole while living with ALS
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins

Peace
Meg

 

[Nuts]

Megan, Meg is very wise. I followed her advise and made some of the equipment acquisition about me, telling hubby that it would give me peace of mind to get it in place now and that he didn't even have to look at it if he didn't want to. In fact, I think we may be married to the same man because mine will read what I forward in email also but does not get on the forum himself. The chair is incredibly important. Stress the long lead time to get it ordered and received (since they are built to order). Between the evaluation, insurance approval, building and shipping it can take six weeks or longer. I think I've read about people waiting months. He'd probably hate being pushed around in a manual chair if he waits too long. Another approach is to point out some activity that he enjoys but cant do, or place he can't go, because he tires too easily. The chair restored great freedom to us and put a smile on my husband's face when he started racing around much faster than anyone else can move. If you have room to store things out of site (a spare room or corner of the garage) offer to cover it with a sheet . Above all, don't feel alone. We understand what you are going through. Hugs!

 

[Nikki J]

One of our members Hollister makes a great point that with a wheelchair no sooner you sit ( get and use one) the longer you will retain some ability to make transfers and at least stand. ( I looked for the exact quote could not find)
This translates to use a wheelchair sooner and you will be independent for the bathroom longer. I do not know a single PALS for whom this is not important.
Not to mention that falls will accelerate progression,hurt and even kill you. Seriously. One of my friends here died from a fall and it is not even that unusual.
I am sorry I know that scares you. I hope you can use it to scare him straight....

 

[Megan Dontain]

Nikki- you're not scaring me. I'm sorry that your family is affected by this disease. Thank you for your advice. My husband fell twice yesterday. I think it might be because of the cold. Since the weather change he has been having a difficult time keeping his legs warm as the circulation is not good due to so much atrophy. I bought him a heated blanket and we constantly have a fire going, but he just can't get warm enough. He will only use his cane if we are out in public, he says he doesn't need it in the house, but that's where almost all of his falls occur. I don't know if it's a pride thing or what? He gets so missed when I try and help him up after he's fallen too. He tells me "babe, I'm fine, chill out!" I hate this soo much.
Megan

 

[GregK]

Oh it's definitely a pride thing but the pride manifests as denial.

This disease breaks off chunks of ego and destroys them. You lose your feet then your legs; your hands then your arms; your voice; your ability to swallow; your ability to breathe. Each loss is a piece of your 'self', your identity.

Most come to grips with it, sooner or later. It usually involves some degree of pain: Tripping, falling, dropping coffee cups, choking.
Some don't come to grips with it and hasten their descent.

Tillie (affected) mentioned elsewhere the horrible falls that her PALS Chris had. Hopefully she'll chime in and repeat those stories. PALS don't recover well so that which is lost in a fall is seldom fully recovered. And I speak from experience here.

Please relay that to your husband. If (when!) he falls he'll be losing much more than pride.

 

[WMS10]

My wife tried pretty much everything to fight this disease. One of her ideas was to see a chiropractor (who sold us lots of expensive supplements!). But because of the fear of her falling, I used to leave work before her appointment, and sit in the parking lot of the chiropractor's office where she couldn't see me, to make sure she made it from her car to the front door, without falling.
She had a couple of falls in the middle of the night trying to get to the bathroom, then one big fall trying to get into the shower. I was downstairs making dinner for the kids and heard the THUD. Scared the hell out of all of us. Ran upstairs to find her laying on the shower floor, shaking and crying. Awful.
But she too resisited everything until she no longer could resist. Cane. Walker. Chair.