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

Email this page to a friend  Bookmark & Share Printer-friendly version

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....

()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()

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."

()()()()()()()()()()()()()()())()()()()())()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()

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. "

////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////

()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()

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 !!!!!!!!!!!!!!!!!!!!    :)

()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()()

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.