Tuesday, October 16, 2012

Some follow up.

So often when I blog I am blessed with a great amount of emails in response.  Sometimes I am able to respond & others I get overwhelmed & forget.  So I wanted to write a quick blog with some follow up on some of the questions I've been asked a lot.

For starters I'm glad I'm doing this because one of the main things is I want to share some of the things we've tried with Steve to help him.  It's so important when facing a disease with no cure or treatment to take matters into your own hands & find things that can help improve your quality of life---in all realms.  Our outlook on it has been if it won't make Steve worse we NEED to try it.  I also appreciate hearing from others things they have tried that have worked or not worked for them.  We are all in this together & if we remember that & start working together (which I will refrain from getting on my soap box about that) we could discover something on our own that is what all pALS need.  *For those outside of the ALS community pALS is people with w/ ALS, cALS is caregivers of ALS.*  

So I want to start with sharing more details on what we've tried with Steve, what we have seen helps, & what hasn't worked for him.  It's important to remember that with anything everyone is going to have a different response, so just because something hasn't worked for us doesn't mean it won't for you.  It's so important to try anything (within limits) that will help.  Steve & I & our families are big believers in natural remedies along with medicine.  Medicine is made for a reason but sometimes you can take care of certain things naturally, so we try both.  

So I'm going to list the things we've tried & then I will go into what has helped & what hasn't.  Let it be known out of all of these thankfully none of them made him worse to our knowledge.  A lot of times people only try things based on research, or scientific facts; which in most circumstances I can understand but when facing a terminal disease like ALS we try more than facts---we go through trial & error.  Honestly I will say this 100 times probably in this blog, but if it won't hurt Steve---we WILL try it.  

-Coconut oil, AAKG, NADA, NADH, GABA, Acetyl L-Carnitine, Magnesium Chloride, Astaxanthin, Milk Thistle, Zicam (any sign of a cold), Emergen-C (any side of a cold), Vitamin E, Potassium, Vitamin B12, Vitamin D,Mucinex, Baclofen, Zoloft, Wellbutrin, St. John's Wort, Tea with honey, Normast, neurolast cream, Cough assist, C pap, neck brace, physical therapy, Epsom salt, Boost, Protein shakes, anti-nausea medicine, cranberry juice. 

For starters Coconut Oil is amazing in every form!  We do pill form, melt it & rub on skin & melt & he will drink, & it's also an ingredient in neurolast the cream my in laws developed & yes I will go into further details about that as well because a lot of people have asked.  Coconut oil has so many articles written on it & specifically about ALS also, I will share a few for those interested. Health Impact---Coconut Oil  ALS forum & coconut oil  With Steve personally Coconut oil helps his throat a lot when he swallows it.  He will gargle it also which also shows some significant improvement.  When rubbing it on him it helps relax his muscles, since starting to use neurolast we don't use coconut oil alone anymore as we've seen more results from neurolast than coconut oil alone.  

While on that subject I will explain Neurolastcream.com as it includes a lot of the things above that Steve takes orally as well.  & Yes he takes these ingredients orally & we use the cream, because we've seen improvement with these ingredients we use them as much as POSSIBLE.  I've mentioned this cream before (& please I'm not trying to sale you on any of this I am simply sharing what has helped Steve).  About 2 months after Steve's diagnoses Steve's mom & dad immediately started to reach out to ALS doctors, researchers, organizations, etc to find any cure/treatment/help.  Through several conversations they realized that there wasn't many options available but there were some promising things.  Steve's mother created a contact with a doctor in Florida who's daughter also has ALS.  Together they began to discover some of these vitamins & enzymes listed above showing great results.  We immediately started giving Steve these orally, however his mother didn't think that was enough.  After months of research & trial & error she developed neurolast cream.  I'm going to include the ingredients & what they do here so everyone can see if it's something that interests them:  Neurolast is a combination of enzymes, ketone bodies, amnnio acids,and medium chain triglycerdics. All of these ingredients have been studied and used for various motor neuron diseases with published success in improving fasculations, tremors, pain, mobility and in improving muscle tone.There is also significant evidence that we can stop nerve cells from dying by supplying them with an alterna
tive source of energy.
AAKG (arginine alpha ketoglutoric acid): This ingredient has been used extensively by body builders, strength experts and others to improve muscle tone and strength. These benefits have been widely researched and validated. GABBA (gamma-Aminobutyric acid): This ingredient has shown to break down Glutamate which accumalates at the junction between nerve and muscle which experts agree is one of the causes of nerve cell death. It plays a role in regulating neuronal excitability throughout the nervous system. In humans, GABA is also directly responsible for the regulation of muscle tone. Coconut Oil (medium chain trigleride): Coconut is broken down in the body as Ketones. These Ketones (KB) supply energy to nerve cells which is believed to slow the process of nerve cell death. MSM (Methyl-sufonyl-methane): MSM is a biological sulfur which is necessary for the synthesis of collagen, immunoglobulin and enzymes. This maintains cell membrane flexibilty which provides the body with raw materials needed to create new cell, to reparir and replace damage tissues and treat disorders such as arthritis, muscle pain as well as increasing circulation and promoting connective tissue health.

^For those of you that are like me & that's too much medical mumbo jumbo don't worry it is for me too for the most part, but all I can say is that comparing when we rub the cream on Steve vs when we don't there is a significant difference.  I've also become a little addicted to it as well for any aches & pains I get with helping lift & move Steve.  
What we do with Steve is rub it all over him at least once a day & then multiple times a day we rub it on his throat & chest as well as his arms & hands.  These are the areas that have bothered Steve the most & he reports that each time he has any discomfort & we rub the cream on it eases some of the discomfort/tightness/spasms.  

Like I said at this point we want things to not only help him last longer but also increase his quality of life.  

While on the subject of spasms, Steve is prescribed Baclofen which he takes 2-3 times daily & we also included potassium.  The Baclofen does work for the most part but he was having some cramping in the areas he experienced the most spasms & that's when we started adding potassium.  Since that he has had significant less spasms or cramps.  

Now the antidepressants.  Being a therapist I am much more on board with these than maybe most, but I also know that sometimes they make things worse instead of better.  I also know that ALS is the most devastating diagnoses one can ever get, so of course it's going to make you depressed.  While facing ANY battle let alone the biggest one probably ever it's important to try to have a positive mindset.  Your mind is VERY powerful.  For those that don't buy into that, talk to Steve about how different he feels on days he's feeling negative down or depressed vs days he is feeling positive or happy---& I don't mean how he feels emotionally I mean physically.  I encourage every person with ALS to experiment to find the right medication that helps.  Steve was taking zoloft alone initially but then he began to experience some anger spells (again totally normal & expected) so we put him on wellbutrin as well.  These medications did help him in the beginning a great deal.  However, as he continued to take them he started noticing he began to lose control of his emotions more even well after having somewhat peace (as much as you can) with the diagnoses.  With a lot of thought Steve recently stopped taking both his zoloft & wellbutrin.  The first day he felt sad and tearful but still reported he didn't want to take them as he truly felt like these were causing him to be more erratic.  By the third day Steve had his mostly happy disposition back & reported he felt more in control of his emotions and moods.  Like I said this has all been a trial & error process the whole time & it's important to really listen to your body with all of these.  I'm so proud of Steve for having the courage to try to stop taking these as it's a huge thing when facing this to stop taking a medication that is said to make you feel more happy.  It's been close to a month now that he hasn't taken an antidepressant & other than the typical moody period his extreme shifts in moods has stopped!  I would like to add that on some days if he felt a little sad I would give him a St John's Wart & reported that it would help a little.  So that is something that is always an option.  

Flem stinks!  For this we use cough medicine, mucinex, the cough assist, & suction machine.  We typically start each day with the cough assist & suction then give 1-2 mucinex a day.  This routine has helped Steve not have too much difficulty with flem.  

Nausea for us has been a recurring issue with Steve & from what I gather from doctors & other ALS caregivers is this can occur with the excess flem.  So our doctor prescribed Steve an anti nausea as PRN to take as he needs---def beats him getting sick. 

Cranberry juice---as I've recently learned a lot of pALS will experience problems with urinary infections we've begun including cranberry juice in his diet to help keep those at bay.  

In regards to Pain & discomfort most all ALS patients will experience pain or discomfort that none of us will truly be able to understand.  Steve is on pain medication but we also use a lot of other things to help ease this.  Physical therapy & stretching has shown him so much relief.  We also utilize the neurolast cream for the pain as well, other than our normal routine if he is experiencing any additional pain we will rub the cream wherever the pain is.  As recommended by our physical therapist we also use Kinesiology tape (the tape you saw all the olympians wear).  We will typically put 2 pieces on his back & shoulders which help a lot to reduce pain.  

ALS not only is the worst disease ever I think it might also be the most expensive, between gadgets, equipment, special drinks, medications, vitamins, etc.  So with that I have learned to search for these medications, vitamins, enzymes, etc online.  I've been able to find most of these on amazon for a portion of the cost that you would get in a health food store.  Any way to save money is always appreciated!  

I hope this helps & any other questions or suggestions are always welcomed! 


3 comments:

  1. I don't know if he can take this but when I was having bouts with depression after having my son and losing my grandmother 9 months later , my obgyn recommended taking a b vitamin complex. It has really helped me and it is 3 years later. Just thought I would share. Prayers for you and Steve

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  2. Wow, you guys are such an encouragement and such fighters! :)
    Prayers to you!

    http://andlovewillfindyou.blogspot.com/2012/10/even-when-i-am-faithless.html

    x

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  3. Hope, you have such an amazing spirit and light about you. The world needs more beautiful people like you.

    ReplyDelete