Friday, July 13, 2012

Options?

I find myself amazed at the fact that ALS was first diagnosed over 150 years ago and today we still have no cure, no treatment, and very little knowledge about a cause.  How is this possible with today's knowledge, scientific and medical advancements, and the technologies available?  What is known is that there seems to be no rhyme or reason to who gets it.  They do know there is a genetic predisposition to ALS in some families (familial ALS) but others, like myself, have the sporadic condition.  People from all cultures and regions around the world have been diagnosed with ALS.  Both men and women are diagnosed with ALS.  While most people are over 50 years old when diagnosed with ALS, there are people in their 30s and 40s (I am 42) and some as young as early 20s (Stephen Hawking was diagnosed at 21). 

There are people who claim to have found treatments and/or cures for ALS using alternative methods but there seems to be no consistency to the claims.  One person found help with this treatment, another with that, and yet someone else swears by this and that combined.  I am not at all opposed to alternative medicine but there seems to be no supporting data to say "this actually works".  For example, I recently saw a holistic medical doctor who put together a plan for treatment that included a number of different methodologies.  One is an IV protocol created and administered by a doctor in the northeast.  It involves IV treatment two times a week for 12 weeks and costs $10,000 or more.  The doctor in the northeast claims that 75% of her ALS patients have delayed onset of symptoms with the treatment.  On the other hand, one of her former patients wrote that while the treatment may have offered some delay to their symptoms, they wished they had spent the $18,000 on doing things with their family while they were feeling well enough to do so.  This kind of information leaves me feeling conflicted. 

On one side, the medical community has no cure for ALS and no proven treatment to drastically delay symptoms.  One of the reasons for this seems to be that each person with ALS has a different timeline and progression pattern.  While there are similarities that can be followed and documented, patients are different and experience ALS in their own way.  On the other side, alternative treatments differ greatly and include (but are not limited to) IV protocols, detoxification of harmful toxins in the body including removing filings from teeth, changes in diet and hormones, taking specific supplements and vitamins, hypnosis, acupuncture, reducing exposure to EMF (electro magnetic field), prayer, and other metaphysical healing methods too complicated to explain.  So, what does one do?

With a disease like cancer, there are proven medical treatments and relief for symptoms of both the disease and the side effects of the treatments.  They are not 100% effective and often, I understand, the treatment makes patients feel worse than the disease on its own.  However, the thing I am most envious of is the hope.  Over the years, the medical treatments and survival rates for cancer patients have greatly improved through research, trials, practice, and whatever else it takes to get that kind of progress.  With ALS, after 150 years, there is still only one drug available to slow the disease progression and that only works for some people and the delay is generally only measured in months rather than years or decades. 

I want to believe there is something out there that can help me and the thousands of others suffering from ALS.  How do I do that when there is no hope offered by the medical community?  Do I try the alternative invasive therapies that have no proven success?  Do I try one or more of the noninvasive ones?  Do I just go for broke and try them all, proof or not?  The truth is that I find myself inclined to not try anything outside my experience because it can all be so overwhelming.  Also, at the moment, I feel relatively good and I do not want to do anything that will change that in a negative way.  Quality of life is extremely important to me and right now life is good!

There is just so much to consider when looking at all the options and it is so difficult to know what the best decision is.  While I weigh the treatment options available, I believe the best medicine for me is living life the best I can every day, smiling and laughing every day, staying active every day, loving and being loved every day, looking forward to the future every day, and sharing a glass of champagne with my husband every night to toast the day that has passed. 

4 comments:

  1. Listen to the One who is speaking to your heart. Trust your instincts. You will know what to do and when you need to do it. Just know that LOVE conquers all.

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  2. There is no hope through the medical community - Jesus is the only one who can give true hope - those of you who don't believe will laugh or make fun and that is totally fine - I understand. However, to those of you who do you know that Jesus is the way, truth and life. God created us - he has our life planned out for us - he has the answers and he can share them with us if we listen. However he gave us his son Jesus who died for us - this is the way to have eternal life and this is where our hope lies. Speaking to you a few times about this and knowing you don't believe I think the best thing for you is to do what you are doing - still researching, spending the best quality time with your family and friends and having the best attitude ever. You've always had a good attitude towards things I love that about you. Keep fighting the fight. However I would still not give up on Jesus. I love you more than you know. xoxo

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  3. Chrystie, Wow! What a challenge this damed ALS thing is! And what insight and strength and determination you have.
    I love! love! love! that you toast and celebrate each day with Dan. That is so inspiring! This is a quote from a book I am reading so I guess since the same message keeps coming to me I should really take notice...

    "Surely to live with a heightened sense that today isn't just any other day would greatly enlarge our appreciation for bread and breath, as well as all the other blessings that daily come our way. Or as Mary Oliver puts it with poetic vividness:

    "of course for each of us, there is the daily life. Let us live it, gesture by gesture. When we cut the ripe melon, should we not give it thanks? And should we not thank the knife also? We do not live in a simple world."

    From The Grateful Heart by Wilkie and Noreen Au.

    Keep toasting!

    Steph

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  4. This is why it is called a medical practice! They practice on us until they get it right. Love to you and the family.

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