Diagnosis Date

Diagnosed December 3rd 2009





















Tuesday, November 23, 2010

We praise you and are thankful to you Lord for...

  • How this diagnosis has caused us to slow down and sometimes stop and take in the wonderful relationship that you have given Gary and I
  • Thank you Lord for the times you directed us to people programs and memories to heal past wounds that would have kept us bitter and resentful
  • for the trials of daily living so that we can appreciate the simplest kind act that another would do, with no hidden agenda.
  • the care and concern that others have shown with even just a brief hesitation of their own tasks to ask is everything OK.
  • being able to see a side of our kids that we would not have seen to this depth... their care, love and sensitivity along with maturity to step up to the plate to help out.
  • understanding that every minute counts and every breath is a gift
  • to be able to see you Lord in friends and even in strangers that have spoken words of concern
  • the time Gary and I have together to be more willing to understand each other and not to be in a rush to get to our own agenda
  • thank you lord for your direction on your treatment plans that have shown hope and restoration rather than treating the symptom Lord you are working on our whole foundation emotionally, physically, mentally, Spiritually.
  • Lord thank you for how you are moving in friends and strangers hearts alike. It is very humbling to have to really rely on our daily needs to be met by you working through others. I feel before I knew how it was to trust in you. But I can see now it is easier to trust and rest in you when I still had some control of the wheel. You have taken that wheel from us totally. We have no choice but to rely on you our hands have been tied. And through the answered prayers you are showing us once again in a larger way how to find rest in YOU. Lord thank you that you love us so much that you would still care enough to refine our hearts even greater. I pray for your strength and your rest.

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Monday, November 22, 2010

Hi I am Ashley,and I am 18 my dad calls me, Beaner


Dad took me to many of my baseball games this summer I was hitting home runs


I like shooting pool with Mom and Dad



This is me and Dad on my sweet sixteenth golf cart I am driving pretty good


It sure was hot out on this day


Dad was watching me on the bumper cars at the fair I love driving



Going fishing on the pier with dad and my brother


This is just a really BIG chair whew!!



I would just like to share what has been going on with my dad. He is really brave about all this, sometimes he just falls when he is walking and I check on him to see if he is alright, he says yes he is ok so I can just help him up.
Dad has also been walking real slow and he talks kinda quiet and slow I just have to listen better to hear him...but he is still dad...He helps me with my laundry when mom is away working and I help my dad with the dishes after supper...he is so funny. I am sad that dad is not feeling well but we know he is doing all the right stuff so he can feel better and walk fast again. He likes to take rides on my golf cart with me but he knows I have to drive :). It was sad seeing dads truck after he wrecked it. I was really scared to see him. But when I did see him I just needed a real big HUG to know he was alright. Dad likes to see me outside listening to my music and dancing in the backyard because he knows that makes me happy. I wish dad could dance in the backyard with me too, to help him feel better. I do love my dad, he is the best dad ever. He loves me too we have a lot of good times together. Dad, I can not wait until you get better. Just know I am always here for you just say, " Beaner can you help?"

 Love you Dad
Beaner

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Saturday, November 20, 2010

Question: Are we close to finding a drug to cure ALS? This illness has been around for so long. Why is it so difficult to find treatments?

ALS is a very complicated disease, and researchers have not yet figured out its root cause. That makes therapy development very difficult, as we do not have a genetic flaw to aim at fixing. In fact, there is no clear target at all, although researchers have a lot of possibilities. 
The underlying problems in ALS are in the brain and spinal cord. One of the biggest challenges in identifying the root cause of and targets for therapy development for ALS is the fact that it is very difficult to study the workings of the brain and spinal cord while someone is still alive. Whatever is causing motor neuron degeneration in ALS occurs at a chemical or molecular level, and we do not have tools to study these mechanisms in living people — even sophisticated tests such as MRIs can’t really tell us what is going on at a chemical level. Ideally, we would be able to study the brain or spinal cord in the laboratory, but we can’t take out pieces of the brain or spinal cord from a living person without causing severe injury such as a stroke or paraplegia. Therefore, we must rely on information gleaned from animal models of ALS, which are not perfect models for the disease, and from studying the brain and spinal cords of individuals who have died from ALS.   
But, despite these challenges, researchers have made a lot of progress, and there are some promising potential therapeutics under development. Unfortunately, most of these will not “cure” the disease, but even treatments that reduce or delay its effects will be very welcome. 
The most advanced treatment is, of course, riluzole, which is on the market for ALS, and increases survival a little. Knopp Neurosciences has been developing a drug, dexpramipexole, which was shown to be safe in a Phase II trial, and showed the potential for benefit (the trial was too small to be conclusive). This drug was designed simply to protect nerves from death — but the results look positive enough that Biogen Idec (a big pharmaceutical company) has licensed the drug and will start a much bigger trial in early 2011 to see how much of an effect the drug has on ALS progression. Trophos Pharmaceuticals also has a neuron-protecting drug in trials that has shown some promise. 
Other companies have drugs that affect specific aspects of ALS pathology. For example, arimoclomol, which is currently in a Phase II trial, is a drug designed to reduce aggregation (reducing the size of the clumps of protein typically seen in ALS spinal cords). Cytokinetics and Acceleron Pharma both have drugs that increase strength, which may improve quality of life. Cytokinetics’ drug has been shown to be safe in Phase I studies, and the company intends to test its efficacy in larger trials soon. Acceleron’s drug is currently in a trial for Duchenne muscular dystrophy, but the company suggests that it will be tested in those with ALS next. Isis Pharmaceuticals is developing a compound (developed by MDA grantee Tim Miller at Washington University) that aims to reduce the amount of toxic SOD1, the protein responsible for some forms of familial ALS.  
Stem cell therapies for ALS have been widely publicized. Currently, the most advanced stem cell treatment for ALS that is going through the FDA approval process is in a very early stage safety trial run by Neuralstem. This study is designed to find out if injecting the stem cells into the spinal cord is safe. No stem cell treatment has been in an efficacy trial for ALS, so no such treatment has been shown to work or be safe.
There are a lot of possible treatments in development at this time — we have only looked at the most advanced possibilities here. Unfortunately, the drug development process is fairly slow, as we need to be certain that a drug is both safe and effective before it should be prescribed to patients. If the most advanced therapies in development work, it still will be at least two years before they are available to patients outside of clinical trials. Nonetheless, there is hope on the horizon!
We do not want to give the impression that the above list includes the only possibilities of importance — there are actually any number of other possibilities out there that might work, and every day we learn of new possibilities. For example, someone in the MDA community pointed out that we left ceftriaxone (a compound currently in a Phase III trial) out of the above information. This was simply because we only mentioned one drug that acted through each mechanism, in each case the most advanced. The hypothesis is that ceftriaxone may reduce levels of glutamate (thought to be toxic to nerve cells), which is similar to how riluzole is thought to work. In no way did we mean to suggest that this Phase III trial was unimportant! In fact, we think the results will be very valuable, and the drug is as promising as any out there. In a short response like this, we couldn’t possibly mention every possibility (isn’t that a great place to be)! Clinical trials are an extremely important part of the therapy development process. But, before participating in any clinical trial, we suggest that you understand the pros and cons of a particular trial and what the researchers hope to learn from the trial. Make certain that all of your questions are answered before consenting to participate. For more about participation in clinical trials, see the Quest magazine article Being a Co-Adventurer

Wednesday, November 17, 2010

Current Treatments:I am mostly working on foundational health issues

Dr Erik Pierce  We have seen a difference in range of motion, less dizziness, and I feel better as a whole and have been told I look very good. It has only been two months since I started the treatment.
January 10, 2011
Changes are still happening for the good. Had a check up appointment with the ALS doctors and all my test were better than 6 months ago. Thank you Lord for your direction and giving knowledge to many of my docs like Dr Erik Pierce. You do not have to be terminal to benefit from this doc, be proactive.

Dr Milan Packovich
Bio-Identical Hormone Replacement Therapy
 This is a doctor in Dover, Ohio whom has been working on checking and balancing all my hormones. I have now seen him for 1 year. It has helped me to feel better and more energy also I am not seeing any muscle loss at this time. I truly feel better than I did at thirty if it were not for the ALS.

Eric is winning This is a Blog of another ALS patient which has inspired us the most. Vibration Plate is one item we started using after reading Eric's blog. He also has monthly updates which is just nice to see how things are going.

UPDATE January 10, 2011
Metro Health Dr Mathew Kirlough: Thank you Dr Mathew Kirlough... Recently all Gary's teeth have been pulled to help with on going infection issues due to advanced stages of gingivitus. Also many teeth had silver fillings with mercury.Here is a link for more information about fillings that helped us to see the possible issues. http://www.evenbetterhealth.com/als-amalgams.asp Gary is def looking and feeling better since the extractions.


November 19, 2010Gary is currently taking the following once daily unless otherwise noted: 
Vitamin C - 1000mg
Vitamin D3 - 2000IU
Vitamin E - 400 IU
Vitamin B-12 with Methylcobalamin - 5000mcg ( Neurologically Active Form
Omega EPA & DHA Fish Oil - 1000mg
Alpha Lipoic Acid - 100mg
Selenium - 200mcg
Flaxseed Oil - 1000mg
ImmPower - 500mg - 2 X Daily
Super Enzymes Supports healthy digestion - optimizes nutrient uptake
_______________________________________________________
Vitamin B-100 Complex which includes the following:
B1 - 100mg
B2 - 100mg
Niacin - 100mg
B6 - 100mg
B12 - 100mcg
Biotin - 100mcg
Folic Acid - 400mcg
Panothenic Acid - 100mg
Choline Bitartrate - 100mg
Inositol - 100mg
PABA - 10mg
_______________________________________________________
Dr Milan Packovich 330-339-9000
Bioidentical Hormone Replacement Therapy
DHEA - 25 mg
Testosterone - 100mg 2 X daily
Pregnenolone - 25mg
_______________________________________________________
Mangosteen Juice - 3 ounces 3 X daily
Creatine - 1 X Daily
Spirutein - 3 X Daily
D-Ribose - 3 X Daily
_______________________________________________________
Baclofen - 60mg - daily
_______________________________________________________
Stretching - Exercise - Massage - Hot Tub - Changing Diet - Chiropractic Care - OT - PT - Speech - Dental Care
 
 
 
 
 
 
 
 

Grandpa Mitchell - Sometimes pictures just say it better than words...

Kyli and Grandpa just hangin out




Alissa gets grandpa's full attention !


Why are we so serious ? Hmmm...


Happy Birthday to my granddaughters :)
Alissa (1) Piper (4) Kyli (6)


Time out for snacks woohoo!


Not sure which one of us needs nap time most :)

Granpa is just so funny !!!!


Piper, Grandpa says "CHEESE"

Kyli and Piper are so ready to hit the fair can grandpa keep up !

Oh yea grandma just had to get in the picture lol
Love you girls from Grandpa Mitchell

Dad read when you get to the hospital before you walk in... Letter from son Lance before confirmed diagnoses of ALS Dec '09











I Understand...<3

Perhaps we'll never understand each other
Loving doesn't mean that we agree.
If that were so, then I would say, why bother?
But there are things I know I will never see.
I'm sure your heart knows what I don't yet know:
The pain of loving a reluctant son;
The anger, coming fast and building slow,
Of being helpless to control someone.
You want only that I grow up right,
But you know what right is, and I still don't.
I have to learn to wield my inner light,
And if I follow yours, well, then I won't.
I'm sorry for the anger in the air;
Though we fight, my love is always there.

I Mean it Dad! = )

"The greatest gift I ever had
Came from God, and I call him Dad !"

Dad, I wrote this poem and found this quote,because I thought you needed to hear this! I know what is going on right now is tough and life changing but it doesn't amount to the influence you have and will have in the future of my life! I could never ask for another Dad.God gave us each other, and in my opinion we're the perfect pair ! <3 If the doctor is right or even if he's wrong I want the rest of the time we have together to be the best we've ever had ! I know when you do pass away your not leaving us you'll always be there in my heart and the spirit of the family, and especially in our fun & loving memories. To me the best way you can help me is to just be Dad and have a " cup is half full attitude" through it all I have no reason to be sad, cause I know God always allows stuff to happen for a reason. You'll be in the greatest place ever ! I want you to know no matter how bad this thing can get I'll always be there for you and we'll still sit down as a family and have some of the best BBQ in the world, even if you may not be able to talk or interact I know that you can see me and hear me and I know you well enough that we'll both make the best of things. I want you to promise me one thing ! OK... here it is please promise me that even in the last hour you won't give up, and don't ever ever feel ashamed when we have to bath you or dress you...I'm seventeen but I can understand what may happen down the road I accept that with a smile I have a promise to you that I will always have a smile on my face around you, not because I feel that I have to but because I won't be able to not smile! Hey all that I know is that the worst case we still have plenty of time to make more great memories and I plan to do so! So jump on board and we'll have the time of our lives.

P.S. Don't even fret about Ashley me and my brother a while back already promised to do all we can so she can have a great life and enjoy every minute of it.

Also, I know it will be rough on mom as it will on so many others but remember the saying, "What hurts a person and doesn't kill them only makes them stronger" I believe that I me and DJ, and all of Moms friends will give her great support. So basically I'm saying Live life to the fullest and everything will work out. After we do get the news from the doctor today, the worst thing you can do is fret over the past....I know not everything I may have said makes total sense but I'm guessing you get the picture love you dad and when you get home tonight you better walk through the door with the biggest smile in the world no matter what! I'll be waiting at the door with a hug! =) I LOVE YOU LIKE A FAT KID LOVES CAKE! I mean it!


ALS Benefit Walk 2010 for Wayne and Holmes County


"TEAM HOLLYWOOD "


The Mitchell Family


September 2010