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! 

Wednesday, October 10, 2012

Let's take a road trip ;)

Okay so I wanted to share a little adventure Steve & I are planning with you all.

When Steve & I got married we discussed wanting to do something very special for our year anniversary because of our circumstances.  Steve's original idea was we go to Italy, well at this point in our life that's not possible for a multitude of reasons---main one being financial.  So with our anniversary coming & the fact that the whole month of September we didn't leave the house much more than maybe 4 days of the month; between Steve getting sick/saving money/preparing for stem cell we were cooped up in the house.  So much so that going to the grocery store was as exciting to me as dressing up & having a night on the town.  Thankfully Steve has been feeling a lot better & has had a lot more energy so we are able to get out & about now, but we need a trip.

We have both talked so often about wanting to go out west & because we were donated an amazing handicapped accessible van we have decided to make a road trip to California & back.  Yes you read that right.  & before you stop reading I really want to explain why this trip is so important to Steve & I.

Besides everything I mentioned above about wanting to take a trip on our anniversary & us having cabin fever there are several other things that motivate this trip.  For starters, our whole mission (for lack of better words) since Steve's been diagnosed is to remind people to live their lives to the fullest.  A long time ago, when I was about 7 my mom's second husband Chuck one day said to us, okay let's pack up & drive out west.  I don't remember much from him but I remember him saying, 'all my life I've wanted to make a trip out west, but have always let life get in the way.'  For some reason that of all things has always resonated with me.  If you have an opportunity take it---want to do something (within limits obviously)---do it.  That trip we took was my first memory of traveling & from what little I can remember from it that's when I sorta became obsessed with wanting to see everything outside of our small town Pennsylvania.  Take a cross country road trip out west has been on my bucket list forever & as it turns out it's on Steve's also.  So because we want to live by example we decided to make it happen.  We have the time now with me being home & with this van & the lots of loved ones we have scattered across the country we can do this on a budget.

We also plan to make this a little spread some amazing awareness road trip as well! We are going to be making it a point along this trip to spread awareness to any & everyone we come in contact with.  We have some tricks up our sleeve as to how---but you'll have to stay tuned for that. :)

I will be documenting the whole trip.  Going to do videos & photos.  For the sake of everyone who will be worried or just curious I will be updating where we are probably each day on our Hopeforsteve facebook page, so if y'all haven't liked us yet---may be time. ;)  I plan to compile all the video into a little Hope for Steve documentary after the trip. I will be blogging throughout but most of it will be a big long blog at the end.  I will keep a journal like I did when we went to Belize & took our Florida road trip.  It's nice on those days we are stuck in the house to look back at photos & videos & read the journals to reminisce.

So we have MOST of the trip mapped out but not all of it.  Main thing is we aren't wanting to put a set schedule on it.  For 2 reasons really---if we see something awesome along the drive I want to be able to stop & see it & also if Steve is feeling tired or not well we will make sure to allow time for him to get rest.  I'll let y'all know some of our for sure plans we have, but first I want to address all the worried on lookers.  For starters, Steve & I have been planning this for a month & a half & still have the rest of this month to continue to plan.  With the help of Steve's dad we have done a lot of maintenance on the van to assure it is in top condition for the trip.  I have road side assistance with my insurance, so if we happen to have any random car problems we can't figure out all I have to do is make a call.  I am already a walking pharmacist so if we need any medication we will have that---I also already started packing a hefty first aid kit.  Something else that will make everyone feel better is the amount of people we plan to meet up with. (total side note if you are in any of the areas I mention & Steve & I haven't talked to you---message me and after sassing me for not contacting you yet please tell me if you'll be around the month of November).  In all but 1 state we have someone to meet up/stay with which adds even more excitement to the trip!!   We plan to enjoy the trip to the fullest & explore as much as we can but we've also learned this year for Steve not to push himself.  When he needs rest---we rest.

So the plans which will continue to become more 'solid' are as follows.  For the most part we do have people we will be staying with & the remainder of the time we plan to 'camp' out in our van. :) We will have a few nights of getting a hotel but few & far between.  Remember this isn't just a road trip, this is time of our lives, new adventure, awareness bringing, wanderlust living, ON A BUDGET road trip.  So this is why we have been planning this out so much---to make it cheap :)  So far the route is (subject to change): Biloxi, New Orleans, Austin, Albuquerque, Grand Canyon, Drive all through Cali, Big Sur---coastal highway, Yosemite, Redwood, Tahoe, then head to Salt Lake, & the mother load of people to visit in Colorado Vail & Denver, gonna go through Kansas & hit up Chicago, through Kentucky & stop to see my Nashville bff, & back home.  To those this exhausts don't worry about me, I've always had a little gypsy in me so it doesn't sound exhausting intimidating anything negative---it just sounds amazing!!

With all that--any suggestions are always welcomed as well as anyone have anything handy that will make the trip more awesome we can borrow let us know.  For starters---#1 need futon mattress & uh well that's all I think we don't already have---BUT if you think there are some MUST have items we make sure we have---let me know!

I would also like to say a big thank you to everyone who encouraged us to go on with this idea & who support us in our good times & our bad.  Thanks for everyone reminding us that since we've been trying to encourage everyone to enjoy life that we need to as well!

Tuesday, October 9, 2012

Enough slacking

Hi all. I know I've been owing y'all an update---I've had the best intentions to blog many times but between Steve being sick/recovering/etc & him finally feeling like leaving the house I've been slacking.

So for starters a big thank you again to everyone that helped us rally & get stem cell---friends, family, & even strangers all rallied around us & really helped make this opportunity to come true.  We took Steve to an amazing doctor to get an incredible stem cell procedure.  People have a lot of skepticism with stem cell for multiple reasons.  There are a lot of people out there that are thriving on people's desperation & are complete scams but thanks to some very knowledgeable people we were able to determine that the doctor we found is legit.  Another reason people are hesitant is the fear of the unknown, it's not truly known with 100% why stem cell works, if it's going to work on everyone, etc.  The cost was $15,000 & yes that is a lot of money (which is why I continue to thank everyone who made it possible) however when put in this situation I would give anything, any penny/possession/etc to say we tried everything we could to help Steve fight this.  Seeing how much hope there is in stem cell that $15,000 wasn't going to stop us from trying everything we could to raise the money.  Thankfully we are blessed with amazing people in our life that truly understand the importance of trying everything we can.  I can't even begin to thank everyone individually because there were so many people who supported us.  The donations, prayers, warm thoughts, well wishes, spreading the word, helping us research, etc.  Without all of you it wouldn't be possible.  Also a special thanks to Steve's parents for helping financially with the trip to get the procedure done & coming with me to help take care of Steve afterwards.  I would have been a basket case without them & am so grateful they were able to be there with us.  I don't feel like I could explain the procedure anywhere near as well as the doctor, so for anyone interested in this please feel free to contact me, I will give you the doctors information for you all to call & see if it something suitable for you or your loved one. SO...the thing y'all have been waiting for, did it work?

For those that follow me on Facebook or twitter have seen my updates.  It is working!! :)  The doctor was upfront & open the entire time & told us that the results will be different in each person & gave us an idea of what we could expect, however Steve is going above those expectations.  4 hours after the procedure Steve was in some pain (of course) & said "Oh my God."  I immediately jump up to see what's wrong & he said, "I took the first deep breath I have been able to in over 6 months."  I immediately tear up & begin to thank God & spread word.  Steve has continued to see slow progress.  His breathing is still improving, he has some significant less choking, his voice is getting stronger, & since the pain has subsided we started physical therapy again & our amazing physical therapist even noted that his movement has increased some.  He is able to roll over in bed with a little more ease & is able to move a little more in his chair.  We are so thankful for these improvements & are extremely hopeful for more to come.  Thanks for all the prayers & I ask that we continue to pray for Steve to show more significant improvements & also for us to have continued guidance with what steps we should take next.

Steve & I sometimes feel like we can't be great friends, like we aren't even the best of people that deserve all this love but the amount of people that helped & donated was unbelievable & continues to overwhelm Steve & I with how quick everyone stepped up to support us.  To everyone that has never given up on us, never veered from supporting us, who understands our sometimes mood swings, who constantly is there standing behind us, supporting us, cheering us on, pumping us up---please know it is because of you that we are still so determined to fight this.  It's easy to get discouraged in life even without extreme trials & there will always be those people working against you, but because of all of you that have never left us we continue to go on----we truly thank you.  I know people say a lot that we are inspirational (which that is what we aim to do), but you all that rally around us are also.  Each of you that has stuck through us even when the times got really hard, you are the ones that inspire us to keep going.

Steve & I continue to grow as people through this & continue to learn new lessons.  Without a lot of the trials we have faced we wouldn't be half the people we are.

There have been so many other things I've wanted to blog about---but for now I will leave it at that update & share a few things coming up.

Few things coming up:
*Steve & my anniversary October 15th!  What a year it's been & I'm so grateful that we were able to take this journey together.  Will be updating with anniversary plans in the future :)
*The HOPEforSteve golf tournament  is on October 20th, even if you aren't a golfer there will still be activities for you!
*Steve's 30th bday pub crawl For Steve's birthday we decided to put together a pub crawl October 26th, the details are still being worked out but wanted to make the invite so people would save the date.  If I left anyone off the invite on facebook, forgive me, & please pass it along.
*The ALS guardian angels, whom have helped Steve & I a great deal are doing skydiving fundraising event the 27th.  I am actively fundraising for them as they've helped us so much, Steve's been having nightmares about me jumping so I may not jump, but still want to fundraise.  If you are interested in donating click here

Again, thanks for all the love & support.  Y'all/Yinz are amazing!! :)))