Wednesday, January 28, 2009

Getting back to the story...

So, I already sorta bagged on the whole "nutritionist" thing and I should probably qualify some of my rants. These are in the context of whether or not they helped with H's symptoms of ALS. I'm not bagging on "nutritionists" in general, I'm sure that what they do can help lots of people and that there are conditions that can benefit greatly by proper food, avoiding some foods and by supplements.

Now that I've qualified it, I will add that there are lots of people out there that either "think" or "are sure" that they can help you, and I do recommend that you seriously consider whether you want to go down this road for serious illnesses. Another thing to consider is that some of the supplements that are available to us are actually very strong medicine, regardless of whether they are purchased at the local health food store or via the web. These medicines can cause harm if they are not used correctly and carefully, so do your own research and make sure you understand what you are putting in your system, how it might react with other things including your prescription meds and be careful of over-doing it just because it is not a controlled med.

When someone receives a diagnosis of ALS, Cancer or some other deadly disease, everyone wants to help. It seems like everyone knows someone that can too. There's rife machines, there's light machines, there's "body work", there's Reiki (energy work,) there's magic stones, there's clinics that practice homeopathy or osteopathy or some other pathy. It is mind boggling how many alternatives there are in alternative medicine. It seemed like every day someone knew someone that could help fix our problem in one way or another. Now, of course all of these people are genuinely trying to help us and if you are reading this and you recommended one thing or another to us, I don't mean to sound negative about it. I actually thank you for your thoughts or referral. This is a desperate situation and everyone is reaching for straws, especially us. So we follow down these paths and Lord knows I wish even one of them worked for us. None of them did.

All that being said, there is something also to be said for hope. Every little thing you do gives you hope that it will work and from the time you hear about it to the time you have finished "doing" it, hope remains alive.

The downside of course is that when something doesn't work, there is a let down and a sadness period. This disease seems to be marked by this roller coaster that I have referred to. Major ups and downs, hope and mourning. At some level maybe it is the natural course of things...sort of a slow process of numbing, so that your own sanity is not as wildly affected by each new hope that is dashed on the rocks of failure of the treatment once it is over.

In any case, especially with this disease, you can't just 'give up' because that is a death sentence. You can't really accept it either, because that is a death sentence as well. The problem is the only things you can do to fight are things that are on the fringe. Nothing that "Western Medicine" has to do for ALS really fights the disease, they just sort of try to manage the slow progression in a way that causes the least physical discomfort or prolongs "quality" of life.

So, on we fight, looking for something that will help. Here's an extreme example...someone said that they heard that someone with ALS was cured by getting struck by lightening. Should we have H head to a golf course and hold a metal rod in the air this summer? Maybe so, maybe not. Depends on your perspective of whether or not you have anything left to lose. Think about that one for a minute.

Whatever we do, she probably should not hold a 1 Iron up. I think Chi Chi Rodriguez said.."not even God can hit a 1 Iron." (creds to Bob.)

Out for now. Gonna go play the Disney version of "Scene it" and get my butt kicked by a bunch of kids. Keeps ya humble.


I received this via email today and thought it was pretty amazing.
It did not have an author credit on it, so if anyone knows who wrote it, please let me know so I can credit the author.

Dancing With God
When I meditated on the word Guidance,
I kept seeing "dance" at the end of the word.
I remember reading that doing God's will is a lot like dancing.
When two people try to lead, nothing feels right.
The movement doesn't flow with the music,
and everything is quite uncomfortable and jerky.
When one person realizes that, and lets the other lead,
both bodies begin to flow with the music.
One gives gentle cues, perhaps with a nudge to the back
or by pressing Lightly in one direction or another.
It's as if two become one body, moving beautifully.
The dance takes surrender, willingness,
and attentiveness from one person
and gentle guidance and skill from the other.
My eyes drew back to the word Guidance.
When I saw "G": I thought of God, followed by "u" and "i".
"God, "u" and "i" dance."
God, you, and I dance.
As I lowered my head, I became willing to trust
that I would get guidance about my life.
Once again, I became willing to let God lead.
My prayer for you today is that God's blessings
and mercies are upon you on this day and everyday.
May you abide in God, as God abides in you.
Dance together with God, trusting God to lead
and to guide you through each season of your life.
If God has done anything for you in your life,
please share this message with someone else.
There is no cost but a lot of rewards;
so let's continue to pray for one another.
And I Hope You Dance Through 2009!
====== end snip=====

My take on this is that it is about Faith. Faith to let God lead and trust that there is something else beyond what we know and that someday all of this will make perfect sense, even though right now it seems like pure insanity. Honestly, it is this faith that I have that keeps me sane right now. I'm thankful for that.

Tuesday, January 27, 2009

Some interesting stats...

Since part of this blog is meant to help other people with their struggles, and part of it is meant to help me (by getting it out of my head), I thought you might be interested to know it is having its intended effect. Now, of course it helps me to write it down (though a lot of this continues to rattle around in my head.) But you might be interested to know that as of yesterday, over 700 people from 35 States and 9 other countries have visited the blog and I have received supportive notes from scores of them letting me know that it is helping them in some way. Some of the messages come via facebook, on the blog notes, phone calls and some via email, but i'm amazed that in only a couple weeks of posting that so many people have found the blog and in it, a message that resonates with them in some positive way. It makes me feel good to be able to help others, and some days feeling good is not so easy, so I really appreciate hearing about it. Hopefully it is a small reflection of all the help we have received from friends and family as we go through this.

Monday, January 26, 2009

PIcking up in late 2007, day to day battle with ALS

As I've mentioned we always suspected that there was something wrong with the blood that H received in her massive amounts of transfusions related to the story that started this blog, and we think, started this whole mess. Thus far I've talked about our early research and subsequent treatments for Lyme disease and other co-infections in those early days.

During this whole period, there were other things we were trying, but we found out about a Doc in Colorado Springs that at "cured" himself after being diagnosed with ALS and being wheelchair bound because he suspected he had, and treated himself for, Lyme disease and it's co-infections with IV antibiotics. By the time we heard about this, he was not accepting any new patients and within a couple of weeks he closed down a clinic he had opened to treat others with MND (Motor Neuron Disease). We didn't know how many people he treated or how much success he had with those treatments, but any single positive case was a hopeful one as far as we were concerned, so as fast as the roller coaster went up when we heard about him, it came down when we found out he'd closed for "business." We heard that his PA was going to open a clinic and treat people as he did, but she was not yet ready to accept any patients. This was in the fall of 07. I'll re-visit this whole story later.

At this point, H was having trouble walking and needed support, so I would walk backwards in front of her and she would hold on to my arms and we could go short distances of 50 feet or less. We were starting to wonder how we were going to deal with the stairs in our house, as we were taking one step at a time and it was getting scary for her. I knew the time was near that she would not be able to manage the stairs so I had been working out and carrying 90lbs of dumbbells up and down the stairs every time I went up and down. Every once in a while, we I would carry her up if she were tired and managed that ok. There's definitely a difference between dumbbells with nice handles and H with no handles and a slight weight differential, but it was fine. We managed.

We had a huge Thanksgiving dinner that year with lots of family in town and a big dinner at Mom and Jack's place. It was sort of melancholy. We gave thanks for a lot of things, of course, but in that situation there's sort of this "elephant in the room" where even while you are giving thanks for the good things in your life, you wonder why you are holding some of the cards you have been dealt.

It is around this time that we decided as a family to pull the girls out of school in January and go to Hawaii for a couple of months to spend time as a family and enjoy some life experiences together outside of our little microcosm in HR. Part of the hope too was that the stress of everyday life and our situation was contributing to H's condition and that we could take that away while we searched for alternative cures or treatments.

It was about this time that some people had taken up Lithium as a treatment for ALS, largely based on some anecdotal success stories coming out of Europe, so we secured for her a prescription for that and she started taking it shortly before we left for our trip. There was this amazing video of a guy in Finland (I think) that had been wheelchair bound (supposedly) that obviously had fairly advanced bulbar onset of ALS or some MND (meaning he had a hard time talking and swallowing) and he was riding his bike and running 30 yards or so on YouTube. This little demonstration gave us hope that Lithium was the answer (once again) and the roller coaster went up. This hope, combined with the planning of our big trip had us in a phase of relative euphoria and happiness as we busied ourselves with the details of the trip.

Everything seemed to come together perfectly as we planned our stay. I won't go into detail about that as I blogged often on that trip here: and here: but we were there for a tremendous adventure from January 20th to March 25th of 2008. I'm thankful that I'm in the Internet business and a company owner, which afforded me the freedom to do that. I'm also thankful to the whole team at Thunderbolt Group ( that helped run the business during my absence and dealt with me being 4 hours behind them and "out of pocket" much of the time.

The Lithium trial was really a non-scientific clinical trial that was being "self managed" online by a group on I believe about 200 people had enlisted to take the drug and report their progress or lack thereof on the website. It was very well organized and really an amazing effort. The departure for us was that we had not gone down the path of "treating ALS" before as we were not accepting that as a diagnosis because of the blood issues. But we felt that it was worth it to pursue this path because Lithium is a known drug, has been used for a long time and is relatively safe as long as your liver function is monitored with regularity.

One of the downsides of the Lithium was that it caused GI issues for H and with her declining mobility, well, getting around quickly was becoming a problem and caused its share of stressful situations on our trip. In the end, we did not see any efficacy as a result of the Lithium, so H discontinued use of it after about 2.5 months of use. Later, it was found in the study that it really didn't help anyone, or so it seemed....Another bottom of the roller coaster for us.

During and before the Hawaii trip, Heidi was on a number of other supplements, the combination of which seemed to upset her digestive system, so there were also a number of supplements to try and counteract those issues. She was literally taking full handfulls of pills every day and had them organized into am/noon/pm doses in a huge plastic sectioned box. It was unbelieveable. I can't even begin to describe all the supplements, but again, none of them seemed to help, so it doesn't really seem to be worth the effort to go through that whole "rigamarole."

She had done a long "consult" with a nutritionist in the Bay Area for about $275.00 that ordered a bunch of blood tests (which probably cost $1500) and got all her other labs and therefore went on many of these supplements. This seemed to be a complete waste of time and a lot of money as well as huge boxes of these supplements showed up in the mail every week, not to mention the difficulty in managing these doses and different volumes of pills, liquids, droppers and powders.

Maybe I'll get motivated to give more detail on all that stuff. If anyone reads this and wants details...let me know via a comment on the blog. All it really seemed to do was create havoc in H's digestive tract.