Meet my neurologist at the Cleveland Clinic>

Erik P. Pioro, MD, PhD, FRCPC, is Director of the Section of Amyotrophic Lateral Sclerosis and Related Disorders at Cleveland Clinic, Cleveland, Ohio, where he specializes in the care of patients with ALS

http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=1834

..............and other complex neurodegenerative motor neuron disorders and runs clinical trials to find effective treatments for these diseases. His primary research focus is using magnetic resonance imaging to identify and monitor the progression of motor neuron degeneration in the brains of patients with ALS and related conditions, and the correlation of imaging changes with human and mouse ALS brain tissue.
Dr. Pioro received his medical degree from the University of Calgary in Alberta, Canada, which was followed by a doctorate in philosophy (PhD) at the University of Oxford in England as a Rhodes Scholar. He completed his neurology residency at the Montreal Neurologic Institute at McGill University in Montreal, Canada, where he also completed a fellowship in magnetic resonance spectroscopy. He also trained as a clinical and research fellow in electromyography/neuromuscular diseases at Cleveland Clinic, where he remained on staff.
Dr. Pioro is the recipient of several awards well as grants from the National Institutes of Health, the ALS Association and the Packard Center for ALS Research at Johns Hopkins University. He is a member of several professional associations, including the American Academy of Neurology, Society for Neurosciences, American Association of Neuromuscular and Electrodiagnostic Medicine and World Federation of Neurology. He serves on the scientific committee for the international ALS CARE Database. He holds the Barry Winovich Chair for ALS Research at the Lerner Research Institute of Cleveland Clinic.
Dr Pioro has published numerous journal articles, book chapters and abstracts on clinical and basic-science topics related to neuromuscular function and disease, particularly in relation to ALS and related disorders. He also serves on the Editorial Board of the journal Neuroscience Imaging, and he serves as an ad hoc reviewer for several journals, including ALS and Motor Neuron Disorders, Annals of Neurology, Brain, Muscle and Nerve, Journal of Neurochemistry, Journal of Neuroimmunology, Journal of Neuroscience, Molecular Neurobiology, and Neurology.

Professional Highlights

• Barry Winovich Chair in ALS Research

Education & Fellowships

Fellowship - Cleveland Clinic

EMG/Neuromuscular Disease
Cleveland, OH USA
1995

Fellowship - Montreal Neurological Institute and Hospital

Magnetic Resonance Spectrosco
Montreal, Quebec Canada
1993

Residency - Montreal Neurological Institute and Hospital

Neurology
Montreal, Quebec Canada
1992

Residency - Mayo Clinic

Anatomic Pathology
Rochester, MN USA
1986

Residency - University of Calgary

Neurology
Alberta Canada
1985

Internship - University of Western Ontario

Medicine
London, Ontario Canada
1984

Doctorate - Oxford University Medical School

Oxford United Kingdom
1983

Medical School - The University of Calgary Faculty of Medicine

Calgary, Alberta Canada
1981

Undergraduate - University of Saskatchewan

Anatomy
Saskatoon, Saskatche Canada
1977

Certifications

• Neurology
• Neurology- Clinical Neurophysiology

Specialty Interests

Neuromuscular diseases, Motor neuron diseases, including ALS, ALS with frontotemporal dementia,PLS, Kennedy's disease, Neurodegenerative conditions causing pseudobulbar affect (PBA), Clinical Trials, EMG, Neuroimaging (MRI).

Awards & Honors

Rhodes Scholarship

Memberships

• American Academy of Neurology
• American Association of Electrodiagnostic Medicine
• Canadian Neurological Society
• Royal College of Physicians and Surgeons (Canada)
• Society for Neuroscience

Treatment & Services

• Electromyography
• Neuroimaging (mri, Pet, Spect, Meg Scans)

Specialty in Diseases and Conditions

• ALS with Frontotemporal Dementia
• Amyotrophic Lateral Sclerosis (ALS)
• Bulbar Palsy
• Hereditary Spastic Paraparesis
• Kennedy's Disease
• Motor Neuron Disease
• Multiple System Atrophy
• Neuromuscular Disease
• Post-polio Syndrome
• Primary Lateral Sclerosis
• Progressive Spinal Muscular Atrophy
• Pseudobulbar Palsy
• Spinal Muscular Atrophy

and, he speaks both English and Russian .

http://www.nlm.nih.gov/medlineplus/tutorials/amyotrophiclateralsclerosis/htm/_no_50_no_0.htm

X-Plain Patient Education from MEDLINE Plus

A helpful interactive tool that explains ALS...

Be sure to turn your speakers on for this.

This is a great resource to help explain to others about ALS.

http://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000065.htm

This page from MEDLINE Plus  is where I am directed to via OSU .
I have suffered from a variety of the issues listed and some were of the earlier symptoms that presented themselves giving me a clue that 'something was wrong' scenario about two years prior to my ALS diagnoses.

Swallowing problems

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Some people have a hard time swallowing foods or liquids. This is called dysphagia.
Symptoms of swallowing problems are:

• Coughing or choking, either during or after eating
• Gurgling sounds from the throat during or after eating
• Throat clearing after drinking or swallowing
• Slow chewing or eating
• Coughing food back up after eating
• Hiccups after swallowing
• Chest discomfort during or after swallowing
• Unexplained weight loss

Symptoms may be mild or severe.

Home Care

Most people with dysphagia should have a medical evaluation, but these general tips may help with swallowing problems:

• Keep mealtime relaxed.
• Sit up as straight as possible when you eat.
• Take small bites, less than 1 teaspoon of food per bite. Chew well and swallow your food before taking another bite.
• If one side of your face or mouth is weaker, chew food on the stronger side of your mouth.
• Do not mix solid foods with liquids in the same bite.
• Do not try to wash down solids with sips of liquids, unless your speech or swallowing therapist told you it is OK to.
• You may need someone to remind you to finish swallowing.
• Do not talk and swallow at the same time.
• Sit upright for 30 - 45 minutes after eating.

Do not drink thin liquids without checking with your doctor or therapist first. It may help to ask caregivers and family members not to talk to you when you are eating or drinking.

When to Call the Doctor

Call your doctor if:

• You cough or have fever or shortness of breath.
• You are losing weight.
• Your swallowing problems are getting worse.

Alternate Names

Dysphagia - self-care

References

Dysphagia. Rockville, MD. National Institute on Deafness and Other Communications Disorders. October 2010. NIH publications 10-4307.

Massage and ALS............

Massaging Mary part 1 &2

http://www.youtube.com/watch?v=3S9z9zPYkBA

and

http://www.youtube.com/watch?v=X4Yqphgs6nQ

This of course, you realize rather quickly is hands-on massage rather than mechanical massage (such as with the Thumper Mini Pro 2  electronic hand-held percussion massager).

The massage that Mary is receiving in the videos, I conclude is for relaxation and peace of mind with some actual physical benefits....mainly for Mary.....however...
I think it provides some sort of relaxation therapy on an emotional level for those giving her the massage especially for her family and friends who may be participating.....sharing the love...they have for each other.   THAT  is a good thing!

I have found a number of interesting and informational videos on the youtube pages.
I suggest that you check them out....

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Here is an article>
http://www.massagetoday.com/archives/2005/07/15.html

July, 2005, Vol. 05, Issue 07

Amyotrophic Lateral Sclerosis: Part 1 of 2

By Ruth Werner, LMP, NCTMB, Massage Therapy Foundation President

excerpt:  "Dear Readers:

In my last article I put out a call for massage therapists who work with Amyotrophic Lateral Sclerosis (ALS) patients to get in touch with me. I hoped to share some of their stories withMassage Today readers. Well, the response was amazing. I have lots of information to share, both on the development and latest research into this disease (part 1), and on what therapists are doing to help improve the quality of life of their clients who have it (part 2)."

AND  Part 2:

"Massage? We'll get into specific ideas about massage techniques for clients with ALS in part 2. In the meantime, bear in mind that this is a disease that involves the degeneration of motor neurons but not sensory ones, and the client is fully aware of the changes occurring in his or her body. This combination of factors makes massage a great choice for many ALS clients because sensation is intact and the client can communicate (until he or she is very advanced) about how the massage feels and what is needed. Massage therapists who work with a client who has ALS are probably going to be working with someone in the process of dying. What a gift and privilege to be invited into this holy process."

Until then, many thanks, and many blessings,

Ruth Werner, LMP, NCTMB

THEN:  (go to Part 2  http://www.massagetoday.com/archives/2005/09/11.html )

excerpt:

"Dear Readers:

I love my job! I put out the call for you to share your experiences with all Massage Todayreaders about working with clients who have ALS.

The response was overwhelming. I received letters that touched me to the core. What does this tell us? That massage therapists are active and involved with this population, and they are generous and invested in getting the word out about the value of their work.

I have compiled a collection of some of the responses you sent. If you wrote to me and I didn't use your piece, it's just because space is limited - please don't feel slighted. I will post all the responses I received (from people who gave permission to use them) on my Web site (www.ruthwerner.com). Click on "Massage Today Replies" to read them.

Before we look at a few of the responses from massage therapists in the field, here is a brief overview of amyotrophic lateral sclerosis, also known as Lou Gehrig's disease.

Amyotrophic lateral sclerosis (ALS) is a chronic, progressive central nervous system disease involving the atrophy and eventual destruction of upper and lower motor neurons. This leads to muscular atrophy and ultimately to paralysis. It is considered an idiopathic disease, but as research reveals new information about neurotransmitter dysfunction and synaptic damage, we might eventually find ways to interrupt this process. For the time being, however, ALS has a poor prognosis: Most patients die within two to 10 years of diagnosis, usually from respiratory failure.

ALS often starts in the extremities and progresses toward the core. As the motor nerves degenerate, symptoms include fasciculations (uncontrolled shaking) and spasm. Although the disease does not attack sensory neurons, ALS can be painful as the structure of the body collapses. This disease does not affect cognitive function at all.

Currently, about 20,000 people in the U.S. live with ALS, and based on the amount of feedback I received, it seems a lot of them are receiving massage! The techniques described varied greatly. Some therapists have found that deep, specific work helped to improve and maintain function. Others have found their clients especially loved being stretched and mobilized. As clients neared death, of course, the bodywork they received became gentler. One recurring theme: Some ALS clients can't speak clearly, or at all. This makes it especially important to be sensitive to nonverbal communications about what feels good and what doesn't.

With that said, read on and benefit from what your colleagues have learned:"

*******************************************************************************

http://www.massagetoday.com/archives/2005/09/11.html

^^^ PLEASE go to the page to read the results submitted by readers.

One quote that tells it like it is,  from >  Cassandra Curley, LMT

"For those considering taking on this task, I suggest that you learn about the disease, and be prepared to witness incredible pain and suffering. The benefits to the client, however, are greatly worth the effort."

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from >

  http://www.pacificcollege.edu/component/content/a

rticle/113-massage-publications/849-.html

"Research has shown that regular massage and touch is beneficial in helping both mental and physical symptoms of many degenerative and deliberating diseases, including Lou Gehrig’s disease.  Because having a serious illness is very stressful, massage therapy can also help lower anxiety as it significantly lowers the quantity of Cortisol, the body’s stress hormone.

Should a patient’s muscle tissues be too atrophied to work on, then a simple hand, foot and scalp massage can also be highly beneficial. Even reflexology techniques can cause some pain relief for patients. So regardless of the severity of the condition, massage therapy can help. "

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NOTE:    Keeping in mind the needs of the care givers as well as that of the ALS patient.....

the massage therapy would be a great way to relieve the mental, emotional and physical stress of the caregiver too !!!!!!!!!!!!!!!!!!!!    :)

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Mucus/Phlegm and coughing issues Part 1

I found this today while perusing the internet for information concerning care for ALS patients.

http://youtu.be/gwtHH02pdqg

The subject of this video is REM X  < and I translated that as Remedial Exercise for ALS patients with the assistance of therapists......
This particular video does not really apply itself to what I received via the Post Office yesterday, a >
THUMPER  MINI PRO 2   electric massage unit.
but, has to do with some massage techniques, and  that IS related to the THUMPER in that it is a relief mechanism such as for the following>

I have intermittent issues with mucus/phlegm that accumulate in my chest and in my throat that is difficult to dislodge and because of the weakness I have in relationship to the muscles in my chest, causes ISSUES with my BREATHING....
THAT is a big problem for me!

In my research on the subject of  chest congestion relief, I came across a number of articles pointing to relief achieved by PERCUSSION MASSAGE on the chest / back area of the body which assist in controlling bronchitis and even possibly avoiding pneumonia.  The 'thumping' helps to loosen and dislodge the mucus/phlegm.  This can be helped even further with massage that helps to 'drain' the lobes of the lungs....

The percussion massage technique can be applied by hand.  
There are many times, especially at night, that I ask my spouse to 'thump' on my back and chest to loosen up the mucus/phlegm so that I may expel it by coughing...eventually.

I should point out, that one of the other issues of ALS  is the difficulty in coughing efficiently in order to accomplish what a cough is supposed to do>
 WHY DO I COUGH? 
Because there is excess mucus or other irritant matter from external sources – dirt, smoke, household cleaners – lying on the surface of the respiratory tract, and your body is trying to expel them by propelling it violently upwards.

I have had a continuous decrease of coughing capabilities....it seems to me, for the past two years (early symptom of ALS?) or more....
I get,  what used to seem, as  seasonal congestion....for many years in the past and that lead to bronchial issues (and last November pneumonia).
I would get a 'tickle' in my throat that would cause uncontrolled coughing without any plausible reason...
As a result, that coughing would lead to a lot pain in my body.

But, back to the mucus/phlegm.  Eventually, I will be using a suction machine and a cough assist machine to help evacuate the mucus/phlegm as I won't be able to do it myself. 

In the meantime, I am using other methods to treat this issue and I have been reading that the electronic percussion type massage tools can assist in loosening the mucus/phlegm so that it may be expelled easier than just trying to cough it up and out on my own. It would make it easier on my husband to apply the percussion Thumper rather than manually 'beating' my back/chest.

I will give my evaluation of this machine/ tool in a consequent post.

ALSO>>>

I will continue to research the usefulness of the percussion method of relief to the congestion issue, and will post accordingly.
So, stay tuned :)

ACUPUNCTURE anyone.......?

When looking for resources to help relieve (heal?)


symptoms that come with my condition of ALS.

.....
I see that my insurance company covers some/part

 of 

the treatment for ACUPUNCTURE.

.........
I am going to request an appointment.


Anyone out there ever have acupuncture?????? 

And...????

I have mentioned to people, the number of similarities between MS/Multiple Sclerosis and ALS/Amyotrphic Lateral Sclerosis/Lou Gehrig's and this article on the about.com site, discusses at some length some of those similarities, as well as the differences between the two neurological diseases.

There was a time, early on when we were trying to pin down the diagnoses to my health issues.....that I was not to the point of thinking much about having ALS,,,,,and thought seriously, that perhaps my problems were centered around MS........or Myasthenia Gravis perhaps.

I hated that thought....thinking that not much could be worse than either the MS or MG until the final diagnoses by two separate medical centers (OSU & Cleveland Clinic) who both confirmed the ALS....
then, 
I was sorry it was not a diagnoses of MS or MG  instead..... 

http://ms.about.com/od/signssymptoms/a/Als-And-Ms-Symptoms.htm

...and since the diagnoses of the ALS, upon further reading of  neurological diseases in general  and more specifically about MS for which there is more information about such as on the about.com site.....
I still see a large number of similar symptoms that gives me reason to read and contemplate the shared information about those symptoms for support in dealing with these issues...............
this thought may be helpful to others of you out there in the same situation.

the speech................................

"Fans, for the past two weeks you have been reading

 about the bad break I got. Yet today I consider

 myself the luckiest man on the face of this earth.

 I have been in ballparks for 17 years and have never 

received anything but kindness and encouragement 

from you fans.

Look at these grand men. Which of you wouldn't 

consider it the highlight of his career just to associate

 with them for even one day? Sure, I'm lucky. Who 

wouldn't consider it an honor to have known Jacob 

Ruppert? Also, the builder of baseball's greatest 

empire, Ed Barrow? To have spent six years with that 

wonderful little fellow, Miller Huggins? Then to have 

spent the next nine years with that outstanding 

leader, that smart student of psychology, the best

 manager in baseball today, Joe McCarthy? Sure, I'm 

lucky.

When the New York Giants, a team you would give 

your right arm to beat, and vice versa, sends you a

 gift - that's something. When everybody down to the

 groundskeepers and those boys in white coats

 remember you with trophies - that's something.

 When you have a wonderful mother-in-law who takes

 sides with you in squabbles with her own daughter - 

that's something. When you have a father and a 

mother who work all their lives so you can have an 

education and build your body - it's a blessing. When 

you have a wife who has been a tower of strength 

and 

shown more courage than you dreamed existed - 

that's the finest I know.

So I close in saying that I may have had a tough 

break, but I have an awful lot to live for."

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

Lou Gehrig died less than two years later, on June 2,

 1941, at age 37.

http://www.youtube.com/watch?v=_SKyfGK9brs

The content of this slide show> "ENERGY BOOSTING FOODS for COPD", 
I think is great for restrictive breathing / lung issues that accompany ALS...........

http://www.webmd.com/lung/copd/ss/slideshow-energy-boosting-foods

see if you agree.

I am like Dr. Jekyll and Mr. Hyde when it comes to spending my time researching and then putting to use what I have learned from my research.  I run hot then cold would be another way to put it....

Sometimes, when I am feeling better....I just wish to put my medical issues in a shoe box and then place that shoe box on a shelf out of sight in the back of a closet...thinking that the BAD is just a nightmare that I am slowly waking up from that BAD and all will be BETTER....
that the disease will just disappear and go away....IF I hide it all away in the closet etc.

or, that maybe we live in dimensions of good/bad  and I just need to find the key to the good dimension and stay there and lock the door.....
and during those times, I avoid the research...

though
sometimes when I am feeling better....that is a good time to do a little more in depth research that I DO/WILL put to use in a timely fashion  with the realization that I am not having a BAD dream...that my life as I know it now IS reality and I must move forward with it in a POSITIVE manner not only for my benefit but also for the benefit of others near to me.....
AND
for people like you who, may share the disease of ALS <> or <> something similar..... 
and that you may share these same issues that I do....
that maybe,  you will be LOOKING at my posts and the info I have....
AND
that the way I put it forth to you helps you...

OR
helps others who are not themselves afflicted with actual disease BUT are affected by the disease either as a caregiver or medical professional, friend/relative etc.. 

and that THAT will be a positive for YOU....
and, thus in turn, that makes it more of a positive for me....
and keeps me motivated and in feeling that I have a reason for being...existing until the end whenever that is.
and, so I will CARRY ON!  :)

AND, the same goes for when I am feeling worse....having a BAD day be it physically, mentally (cognitively) or emotionally (being an EMO as my boys would say) or any combination of those things. 

On the BAD days, of course....I cannot HIDE from the disease as easily and be it out of fear....guilt....boredom etc.,  
there are moments I feel I must pursue the answers to the many questions of WHY....
to things that I am feeling 
as, it points to the fact that I cannot stop the ticking of the clock and that my time of doing my research will...
run out.
I do NOT want to have regrets later,   
when
I can still THINK...
about the research I should have done....while I was still able to do it!!

After-all, how difficult is it to sit here, and become 'one' with my laptop....sitting here in my recliner, tv w/ remote, pillows, snacks, phone, BiPap, nebulizer,  the pup-dogs, etc. in an air conditioned room...?!?

Granted, going back to do a lot of retyping of text due to the clumsiness of my hands and fingers these days...may seem annoying to me now (you would not know, as I feel it a necessity to correct the mistakes I am aware of...and I don't catch them all)
BUT,  I  could neither live nor die with that hanging over my head. ;)

I have written all of this ^^
in this post...
in relation to my research.

I collectively put together what I 'glean' from various websites and printed material I pick up when I am out and about as well as all the knowledge I gain from my contacts with the medical community at my appointments.
I mentally sort it and prioritize it.
I CAREFULLY look for  untruths and shams from person like the 'snake oil' salesmand as not to get caught up in them....
&
I will try to point them out to you when I come across them to protect you when you may be desperate for cures etc.   

THINGS and knowledge of those things that I feel is important or helpful, I will try to pass along as I have already been doing.

MY DISCLAIMOR:  Sources, when I can, I will give kudos to....BUT, that is not my priority to endorse people OR products...but rather to help others with the found info,,,,,and I think that would be a priority to those persons also.   My neglect of giving credits to sources is not intentional. 
As I pointed out, I tend to collectively combine info to put out to others.

and lastly....
I will share as best I can my own personal experiences.  Some things are quite personal...and possibly a little embarrassing (though, after having 3 kids and a few hospital stays in my life...I should be  beyond the embarrassment at this point)  and some a little more difficult to come to terms with and thus, it will take a lot of thought on my part as to what I can share and how I will share certain things.  

So, this brings me to the end of this post................
finally <> you say.

I HOPE that what I post on my blog  ALS/JournalLKC and elsewhere, is helpful to you and your plight.

It is certainly a therapeutic outlet for me.   
:)

THANK YOU   for letting me imbibe.

Lindsey

Sources of information via the internet concerning ALS >>

Below is a selection of interesting and reputable health-related web sites as listed at the alsa.org website>

The ALS Association – www.alsa.org

WebMD – www.webmd.com

Healthfinder – www.healthfinder.gov

MayoClinic.com – www.mayoclinic.com

Prevention.com – www.prevention.com

These are sources that I have used and have found them to be both informative as well as interesting.

I post on a facebook page about my hometown.....

this is what I posted today>
>>>>>

I enjoy posting on this page....it is something that I can still do safely and with out too much effort esp. when I can't sleep at night...
and it is perhaps a small but positive way for me to share a sort of legacy of interest in a subject that I and others who visit this page enjoys. As each day gets more difficult for me, I still will try to contribute to all my Delaware friends....some of you whom I have met in person and to those of you I never have or never will....
I saw the line that follows about cancer on the news today, and it just struck me as interesting that cancer has a LOT of advocates.....which is great....
but I felt I need to be an advocate for my cause...there are so few of us with ALS, that when I go in to the emergency room, the staff is a little bit stymied at what they can do for me to treat my symptoms that brought me in to see them.....
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

....and so they said on the news blurb, "1.63 million persons in the USA will be diagnosed with some form of cancer in 2013."

....and, I say:
Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.

I am in sort of an elite group LOL....ALS / Amyotrophic Lateral Sclerosis(Lou Gehrig's Disease) a neurological disorder....not to be confused with but has some similarities of MS (Multiple Sclerosis).

So, let me help to educate you my friends.....

Facts You Should Know>

ALS is not contagious.

It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually.

Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.

Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more. More than half of all patients live more than three years after diagnosis.

About twenty percent of people with ALS live five years or more and up to ten percent will survive more than ten years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.

ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.

ALS can strike anyone.

The onset of ALS is insidious with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.

There can be significant costs for medical care, equipment and home health caregiving later in the disease. It is important to be knowledgeable about your health plan coverage and other programs for which your may be eligible, including SSA, Medicare, Medical and Veteran Affairs benefits.

Riluzole, the first treatment to alter the course of ALS, was approved by the FDA in late 1995. This antiglutamate drug was shown scientifically to prolong the life of persons with ALS by at least a few months. More recent studies suggest Riluzole slows the progress of ALS, allowing the patient more time in the higher functioning states when their function is less affected by ALS. Click here for more information on the drug. Many private health plans cover the cost of Riluzole. Further information on Riluzole coverage through Medicare Prescription Drug Benefit can be found in the Advocacy pages of this website.

Reports from three separate patient databases described long range experience with Riluzole. All three reports suggest a trend of increasing survival with Riluzole over time. More studies that are double blind and controlled are needed to confirm these database observations. The trend appears to indicate that longer periods of time than those used in the Riluzole clinical trials may be needed to see the long-term survival advantage of the drug. An interesting observation was that despite the fact that the Irish government provides Riluzole free of charge to people in Ireland with ALS, only two-thirds of the patients registered in the Ireland national ALS database reported taking Riluzole.

I WILL KEEP GOING and LIVING FOR AS LONG AS I CAN!!!

sincerely,
Lindsey

t on a facebook page about my hometown.....

this is what I posted today>

for persons who desire information about ALS........

this is a great place to start gathering information......

PLEASE SHARE>

http://www.alsa.org/about-als/what-is-als.html

I go to Cleveland Clinic at the end of the week to see the ALS nurse for a checkup.

Before I go to my appointments at the clinic, I fill out a questionnaire online to update the people at the clinic with any changes in my condition from my last visit.
One of the questions, is> Have you fallen  at all in the past two months???
I completed the questionnaire last night and I was able to answer NO.
I should have waited until this evening to complete it....
I opened the blinds in one of the bedroom windows to let the setting sunlight into the window to better see my computer keyboard, and, when I turn away from the window,  my right foot did not make the turn and I ended up falling with my foot going into & through  the box fan that was sitting on the floor....
Once I began the fall, I could not stop myself.....

I stayed on the floor where I landed to see if I had done anything major to myself....
and waited with Reuben the brown Lab who 'comforted' me the best he could by staying close until my husband Brent came in and found me.

I seem to be OK....though, I know already that I pulled some muscles..I can feel that.
I was lucky the floor was soft with the carpeting.
I was afraid that I had injured the ankle, but that seems ok.

I noted in my recent post Dexterity Part 1 that I had been noticing some physical changes, recently and this was further verified tonight.....

I have so much to look forward to.................................NOT!!!!!!!!!!!!!!!!!

;(

This is Cleveland Clinic week for me.

....
time to get a checkup with the ALS nurse in the

Neurological disease department.

It is a long trip.....with over a 3 hour ride one way.

We purchased an invertor for the car so that I am able

 to use the BiPap breathing machine while we travel.

 Not only do I use it while sleeping, but also, at 

various times throughout the day.
...
It is one of the MOST important tools I have for

 survival at this time..
..
that, AND, most importantly.....simply keeping 

healthy in the respiratory area of my bodily 

functions...

..
FLU SHOT is a priority....as is a pneumonia vaccine
.
I will become a recluse soon....as the weather starts 

to change....to avoid coming into contact with 

infected peoples ;(......................................

that saddens me a great deal.

SUBJECT:

Dexterity  Part 1

My husband has been pestering for days now for me to cut his hair....

I just cut my younger son's hair this morning.....

I had been putting off doing my husband's, as I have been noticing in recent weeks, how my hand and finger dexterity is diminishing.

I am not speaking of my left hand...that has been a problem for at least two years now (having been one of  my initial symptoms for the ALS.)

I am speaking, about the NOW noticeable beyond a shadow of a doubt......changes in my right hand.

Difficulty in opening things from boxes, jars to plastic baggies etc. and holding things.....

You cannot tell.....too much yet.....in reading my posts on this blog as I constantly am self-correcting my typing here on the computer.  That is frustrating.

I rarely do handwriting these days.....

I used to enjoy calligraphy and I took pride in my penmanship........

I learned needlework from my mother when I was a young child.....and had to  give that up....

Zipping, unzipping is something my husband helps me with.....just one thing of many things he helps me with.

Turning pages in books another problem....glad I have a NOOK/Kindle.

More problems include but are not limited to dressing/undressing,  turning keys and door knobs, gripping, picking up small objects, using utensils such as knives, hair brushing (&teeth) can hardly use tweezers etc. etc.

I even dread writing and signing checks these days....not only with all the money being spent....but...it is a lot of physical work.   Seems silly?  !

Like eating,,,,,, I switch back and forth between hands when using utensils etc..   <That along with chewing (my tongue does not co-operate) and all,,,,,,,,,,,it has become tiring.

Back to my hair-cutting skills.   I have cut hair for my husband and kids most of the time for the past 30 years, an ECONOMY related habit that continued....

  When the older son moved out 4 years ago, he started going to a 'salon' as it was just too inconvenient to make the drive to our home for that.   So, that is one less head of hair for me to coif....

The younger son was pleased with the results of today's cut.....

But, I was more than a little nervous doing it......the electric razor has seemingly gained a couple pounds of weight....and I do not have the control over its movements.....like I would like to have....:(   NO mishaps.....:O  this time.....but that was by shear luck.

I left the kit out on the counter.....will try to do my husband's hair tonight after he gets home from work.

IT IS SUMMER...........so I CAN just to a 'buzz' cut....and get away with it I think.

HE does not have that much hair now-a-days anyway/////////!

Then....there is the hair=care  for the 4 dogs. (They have their own razor kit).    I took a short grooming course a number of years back, and though the breeds (Labs & Gld. Ret) we have do not require a lot of fuss in coat maintenance, we trim whiskers, claws and on the Gldn. Ret. the hair in between her toes and hind legs and around the ears.  Mostly, it involves a lot of combing and brushing.  They all shed A LOT.

Cutting my HUMAN family members is not that enjoyable of a task......

On the other hand......

the dog grooming.............is rather therapeutic most times, for both the dogs and for me I think :)

A bonding moment.....especially when, I praise them for their co-operation (they aren't always in the mood...esp when there is nail trimming involved) AND even better for them when I pass out the doggy treats !

OH, in a post note:   My mother resides with us.  She has cut her own hair for years.  For awhile after breaking a wrist, she had difficulties with this task. She did not want to go to a salon....so, asked me to cut it for her.

I was reluctant, as I had not cut hair of the female gender since our daughter lived at home well over 20 years ago......

Mom convinced me to cut it.....which I did using mostly the electric razor..................

I will tell you, it ended up RATHER SHORT......

she has not ever asked me to cut it again.................:)

UPDATE 8/9/13     ---- My husband was happy with his haircut.
As to my mom, I mentioned checking locally to see if there is a hairstylist who would be willing to come out to the house to do her hair.....all she needs is a good cut.  That will last for many months, and would be cost effective I think.