Progress

As I sit here in front of the computer the thoughts and words are just flowing freely. Now if we step back to the Benefit and put a micrphone in my hand, well lets just say, I will say only what is needed and get it turned off as soon as possible. So here I sit comfortably in front of my computer saying what I wish I had shared with many of you at the benefit.

Gary's last appointment about two weeks ago was great. All his test came out with better results than 6 months ago. We praise the Lord that He has created us wonderfully. Praise Him for leading us to doctors, websites, treatments and truth. Better test results is not how it is suppose to be for a ALS patient or even a PLS patient. 

We can not wait to see how things are going to be once they complete the dental work that is needed.Last monday they pulled all his upper teeth. I predict that there will be more improvement. Thats the only thing that can happen, only positive, because he is getting the siver ( mercury ) fillings out of his mouth and removing the cause of  infection in both his upper and lower jaw. This monday he is getting the bottom teeth pulled. We are looking forward to seeing how this will help with his over all health.

We were able to purchase humidifiers to put in the home which helps his breathing and of course we all have noticed a big change in the home because of the humidifiers. We would highly recomend them to anyone it is great.

The stress taken off our shoulders for getting the windows covered in plastic. Having the extra quilted clothing to help keep his body warm, also helps with our stress. Having a fresh stockpile of his supplements ready for this month, which is so nice. Getting our utilities and monthly bills caught up adds to the feeling of less stress to both of us. It is amazing how heavy the burden is when you can not see a plan before you. Not knowing how everything is going to work out. We try so hard to put that plan together but yet another situation comes up to cause the load to become even more impossible to manage.

 I guess that is what I needed to learn more about what is Faith, a deeper meaning of faith, a deeper faith, its like hanging from the cliff and you hear this voice that wispers quietly to let go...and everything in your mind, in your gut, in your heart tells you to not let go and that you have to keep on fighting to hold on...in your ehaustion you know you have to find the strength to not only hold on but to pull yourself back up to saftey and that all you have is you. Well then you realize it is The Lord who is wispering to you...let go...just let go do you trust me...do you have the faith...so you do and then guess what you drop 2 feet to solid ground. Having faith...praticing faith...wow that is a adrenaline rush. Thank you Lord for teaching me yet another lesson of faith. "Lord I cried out to you for our needs to be meet, that we had no other means of anyway all these could be met, and you provided through many, oh so many, more than we ever thought or hoped for, more than the finacial was the love that was shown. I was so unaware of my own need to just see the love poured out to our family at this time. Thank you for loving me through so many family and friends."

We all enjoyed a wonderful Christmas with friends and family. Hope you are all enjoying your Holidays with loved ones.

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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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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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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. 

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

From the begining....

Last December my wife had errands to run and I  needed to go to yet another doctor appointment trying to figure out what was going on...thinking it was some lower back issue...never in my wildest dreams would I have thought I would receive a terminal diagnoses. I go back to that day offten remembering it hitting me like a semi truck. The doc says, "well it looks like you have ALS, Lou Gehrigs Disease you know what that is, Right ?" Well I told him, " I think I have heard of it before..." He then goes on to say it is a neurological disease, it is terminal most live 2 to 5 years and some just a few months, you better go home and get your stuff in order. Not even being prepared for something like this I had gone to my appointment alone. I mean I was just having some problems here and there concerning my legs. Anyway just hearing this news I imediately tried to call my wife, no answer...she was in a appointment herself...it was going to be a little while...I went home and jumped on the computer for a search on ALS. Can you imagine coming across the information I shared on my opening blog, unbelievable...I finally was able to get in touch with Sonja and began to share with her the news...I could not get many of the words out without starting to cry like a baby...we decided it best to continue talking when she came home. Well needless to say there was not a lot of talking going on we just held on to each other and cried. We decided not to tell the kids yet because we were not really sure what it was and what exactly we were dealing with...Suck it up the kids are coming...really hard to gain your composure but we tried to pull it off. My sons and I REALLY enjoy hunting and of course Lance and I had plans to check out the woods later that day...we would still head to the woods but I forgot what I also loved about hunting... is time alone in the woods to think...this I did not need on that day...

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Welcome to Gary's ALS Blog

Welcome to Gary's blog about his fight with Amyotrophic Lateral Sclerosis (ALS, Lou Gehrigs Disease).

Gary was diagnosed with ALS on
December 3rd, 2009



We came across this video on Youtube and felt it describes some of the emotions we have been processing for the last 10 months.




http://www.youtube.com/watch?v=teMElxrV-iw&NR=1&feature=fvwp

Definition

Amyotrophic lateral sclerosis (ALS) is a serious neurological disease that causes muscle weakness, disability and eventually death. ALS is often called Lou Gehrig's disease, after the famous baseball player who died of it in 1941.
Worldwide, ALS occurs in one to three people per 100,000. An inherited form of the disease occurs in 5 to 10 percent of the cases. But in the vast majority of cases, doctors don't yet know why ALS occurs in some people and not in others.
ALS often begins with muscle twitching and weakness in an arm or leg, or with slurring of speech. Eventually, ALS affects your ability to control the muscles needed to move, speak, eat and breathe.

Symptoms

Early signs and symptoms of ALS include:

• Difficulty lifting the front part of your foot and toes (footdrop)
• Weakness in your leg, feet or ankles
• Hand weakness or clumsiness
• Slurring of speech or trouble swallowing
• Muscle cramps and twitching in your arms, shoulders and tongue

The disease frequently begins in your hands, feet or limbs, and then spreads to other parts of your body. As the disease advances, your muscles become progressively weaker until they're paralyzed. It eventually affects chewing, swallowing, speaking and breathing.

Causes

In ALS, the nerve cells that control the movement of your muscles gradually die, so your muscles progressively weaken and begin to waste away. Up to one in 10 cases of ALS is inherited. But the remainder appears to occur randomly.
Researchers are studying several possible causes of ALS, including:

• Free radicals. The inherited form of ALS often involves a mutation in a gene responsible for producing a strong antioxidant enzyme that protects your cells from damage caused by free radicals — the byproducts of oxygen metabolism.
• Glutamate. People who have ALS typically have higher than normal levels of glutamate, a chemical messenger in the brain, in their spinal fluid. Too much glutamate is known to be toxic to some nerve cells.
• Autoimmune responses. Sometimes, a person's immune system begins attacking some of his or her body's own normal cells, and scientists have speculated that such antibodies may trigger the process that results in ALS.

Risk factors

ALS risk factors may include:

• Heredity. Up to 10 percent of the people who have ALS inherited it from their parents. If you have this type of ALS, your children have a 50-50 chance of developing the disease.
• Age. ALS most commonly occurs in people between the ages of 40 and 60.
• Sex. Before the age of 65, more men than women develop ALS. This sex difference disappears after age 70.
• Geography. People living in Guam, West New Guinea and parts of Japan have an increased risk of developing ALS. Dietary factors may be to blame.
• Military service. Recent studies indicate that people who have served in the military are at higher risk of ALS.

Complications

As the disease progresses, people with ALS experience one or more of the following complications:
Breathing problems
ALS eventually paralyzes the muscles needed to breathe. Some devices to assist your breathing are worn only at night and are similar to devices used by people who have sleep apnea. In the latter stages of ALS, some people choose to have a tracheostomy and use the full-time help of a respirator that inflates and deflates their lungs.
The most common cause of death for people with ALS is respiratory failure, usually within three to five years after symptoms begin.
Eating problems
When the muscles that control swallowing are affected, people with ALS can develop malnutrition and dehydration. They are also at higher risk of aspirating food, liquids or secretions into the lungs, which can cause pneumonia. A feeding tube can reduce these risks.
Dementia
People with ALS are at higher risk of developing:

• Frontotemporal dementia
• Alzheimer's disease

Preparing for your appointment

If you're having some of the early signs and symptoms of a neuromuscular disease such as ALS, you might first consult your family doctor, who will listen to your description of symptoms and do an initial physical examination. Then your doctor will probably refer you to a neurologist for further evaluation.
What you can do
Once you're under the care of a neurologist, it may still take time to establish the diagnosis. If you've been referred to an academic medical center, your evaluation may involve a team of neurologists and other doctors specializing in different aspects of motor neuron disease.
While a thorough workup usually means you're getting top-notch care, the process can be stressful and frustrating unless your medical team keeps you informed. These strategies may give you a greater sense of control.

• Keep a symptom diary. Before you see a neurologist, start using a calendar or notebook to jot down the time and circumstances each time you notice problems with walking, hand coordination, speech, swallowing or involuntary muscle movements. Your observations may reveal a pattern pointing to a specific diagnosis.
• Find one 'go-to' neurologist or neurology nurse specialist. If you see more than one doctor and visit more than one department, you need a coordinator who's familiar with your overall situation, willing to answer your questions and prepared to make your concerns known to the other people involved in your care. Your family doctor or the neurologist who orders your tests and subspecialty consultations may be the best candidate, but in some institutions, care coordination is the responsibility of a nurse, social worker or case manager.

What to expect from your doctor
Your family doctor will carefully review your family's medical history and your signs and symptoms. Your neurologist and your family doctor may both check your neurological health by testing:

• Reflexes
• Muscle strength
• Muscle tone
• Senses of touch and sight
• Coordination
• Balance

Tests and diagnosis

Amyotrophic lateral sclerosis is difficult to diagnose early because it may appear similar to several other neurological diseases. Tests to rule out other conditions may include:

• Electromyogram. This test measures the tiny electrical discharges produced in muscles. A fine wire electrode is inserted into the muscles that your doctor wants to study. An instrument records the electrical activity in your muscle as you rest and contract the muscle. This test is mildly uncomfortable for most people.
• Nerve conduction study. For this test, electrodes are attached to your skin above the nerve or muscle to be studied. A small shock is passed through the nerve to measure the strength and speed of nerve signals.
• MRI. Using radio waves and a powerful magnetic field, MRI can produce detailed images of your brain and spinal cord. It involves lying on a movable bed that slides into a tube-shaped machine, which makes loud thumping and banging noises during operation. Some people feel uncomfortable in the confined space.
• Spinal tap (lumbar puncture). This test analyzes the fluid surrounding your brain and spinal cord (cerebrospinal fluid). You typically lie on your side with your knees drawn up to your chest. A local anesthetic is injected in an area over your lower spine to reduce any discomfort from the procedure. Then a needle is inserted into your spinal canal, and fluid is collected.
• Blood and urine tests. Analyzing samples of your blood and urine in the laboratory may help your doctor eliminate other possible causes of your signs and symptoms.
• Muscle biopsy. If your doctor believes you may have a muscle disease rather than ALS, you may undergo a muscle biopsy. In this procedure, a small portion of muscle is removed while you're under local anesthesia and is sent to a lab for analysis.

Treatments and drugs

Because there's no reversing the course of amyotrophic lateral sclerosis, treatments mainly involve efforts to slow the progression of symptoms and make you more comfortable and independent.
Medications
The drug riluzole (Rilutek) is the first and only medication approved by the Food and Drug Administration for slowing ALS. The drug appears to slow the disease's progression in some people, perhaps by reducing levels of glutamate — a chemical messenger in the brain.
Your doctor may also prescribe medications to provide relief from:

• Muscle cramps
• Constipation
• Fatigue
• Excessive salivation
• Excessive phlegm
• Pain
• Depression

Therapy

• Physical therapy. A physical therapist can recommend low-impact exercises to maintain your muscle strength and range of motion as long as possible, helping you preserve a sense of independence.
• Occupational therapy. An occupational therapist can help you become accustomed to a brace, walker or wheelchair and may be able to suggest devices such as ramps that make it easier for you to get around.
• Speech therapy. Because ALS affects the muscles you use to speak, communication becomes an issue as the disease progresses. A speech therapist can help teach techniques to make your speech more clearly understood. Later in the disease, a speech therapist can recommend devices such as speech synthesizers and computers that may help you communicate.

Coping and support

Learning you have amyotrophic lateral sclerosis can be devastating. The following tips may help you and your family cope:

• Take time to grieve. The news that you have a fatal condition that will rob you of your mobility and independence is often nothing less than shocking. If you are newly diagnosed, you and your family will likely experience a period of mourning and grief.
• Be hopeful. Some people with amyotrophic lateral sclerosis live much longer than the three to five years typically associated with this condition. Some live 10 years or more. Keeping hope alive is vital for people with ALS.
• Think beyond the physical changes. ALS doesn't typically affect the intellect or spirit. Many people with amyotrophic lateral sclerosis lead rich, rewarding lives. Try to think of ALS as only one part of your life, not your entire identity.
• Join a support group. You may find comfort in sharing your concerns in a support group with others who have ALS. Your family members and friends helping with your care also may benefit from a support group of others who care for people with amyotrophic lateral sclerosis. Find support groups in your area by talking to your doctor or by contacting the ALS Association.
• Make decisions now about your future medical care. Planning for the future allows you to be in control of decisions about your life and your care. With the help of your doctor or hospice nurse, you can decide whether or not you want certain life-extending procedures. And you can determine where you want to spend your final days. Talking about these issues isn't easy. But facing your anxieties about the future may help you better enjoy life today.

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