C. Grant Grimshaw
Elementary School

Rt 20, LaFayette, NY 13084,
315/677-3152

Mrs. Dona McIntyre, Grimshaw Principal

Home Page

C. Grant Grimshaw was born in Jefferson County, New York, in 1904 and taught in a one-room school in Lorraine before graduating from Syracuse University. He then worked for 33 years in the Lafayette Central School District (of which he was one of the founders) and subsequently had C. Grant Grimshaw Elementary School named after him. He was apparently one of the descendants of Joseph Grimshaw, immigrant to New York from Yorkshire, and one of his two wives, Elizabeth Jane Mitchell Booth Hadden. Joseph and his descendants are described in a companion webpage.

Webpage Credits

C. Grant Grimshaw Elementary School

Where is C Grant Grimshaw School?

Obituaries of C. Grant Grimshaw and His Wife, Mary

Where Was C. Grant Grimshaw From?

Which Grimshaw Line is C. Grant Grimshaw Descended From?


C. Grant Grimshaw and His Wife, Mary, Are Buried in LaFayette

David Grant Grimshaw, C. Grant Grimshaw’s Grandson and ALS Victim 

References

Additional Information on ALS

Webpage Credits

Thanks go to Paul Grimshaw for providing information and inspiration for this webpage. Thanks also to Alida Isham Milhan for providing ancestry information developed previously by Henry C Grimshaw.

C. Grant Grimshaw Elementary School

The elementary school that is named after C. Grant Grimshaw is in Lafayette, New York and has nearly 500 students. A photo from the school website is shown in Figure 1. Basic statistics on the student population are provided below the figure.

Figure 1. Photo of C. Grant Grimshaw Elementary School, from the school website at the address shown below the photo.

Source: http://www.lafayetteschools.org/grimshaw/grimshaw.htm

 

Statistics for C. Grant Grimshaw School:

 

 

School District :

 

La Fayette Csd

 

County:

 

Onondaga

 

Low Grade:

 

KG

 

High Grade:

 

06

 

Locale:

 

Urban Fringe of Mid-Size City

 

Charter:

 

No

 

Magnet:

 

 

Title 1 School:

 

Yes

 

Title 1 School Wide:

 

Yes

 

Number of Students:

 

495

 

Number of Teachers:

 

41

 

Student to Teacher Ratio:

 

12.222: 1

 

Male:

 

268

 

Female:

 

227

 

Native American:

 

97

 

Asian:

 

6

 

Black:

 

5

 

Hispanic:

 

2

 

White:

 

385

 

Students Receiving Free Lunch:

 

122

 

Students Receiving Reduced Lunch:

 

45

 

Migrant Students:

 

0

 

Source: http://www.schooltree.org/361641001447.html

Where is C. Grant Grimshaw School?

The elementary school is located in Lafayette in central New York state. Maps showing the school location are shown in Figure 2.

Figure 2. Maps showing the location of C. Grant Grimshaw School in central New York state, about 10 miles south of Syracuse. Location indicated by red stars.

Aerial View of C Grant Grimshaw School

Obituaries of C Grant Grimshaw and His Wife, Mary

Obituaries of C Grant Grimshaw and his wife are included in “America’s Obituaries & Death Notices and are shown below. They provide considerable information on C Grant and Mary A Grimshaw, including clues on the family origins of Mr. Grimshaw.

 

Post-Standard, The (Syracuse, NY) – August 19, 1997

Deceased Name: C. GRANT GRIMSHAW

C. Grant Grimshaw, 93, died Saturday at Myrtle Beach Manor, Myrtle Beach, S.C., where he had been recovering from a recent fall. [Website author’s note: the date of death was August 16, 1997. He would have been born in about 1904.]

Mr. Grimshaw was a retired superintendent of schools of the LaFayette Central School District and was one of the district’s founders in 1938. C. Grant Grimshaw Elementary School was named for him.

Mr. Grimshaw was born in Adams. After graduating from high school, he taught in a one-room schoolhouse in Lorraine in 1924. He later graduated from Syracuse University with a bachelor’s degree in history and philosophy.

During the silent film era, he worked as a pianist and organist at several area theaters, including RKO Keith in Syracuse, performing music to accompany the films.

Mr. Grimshaw worked in the LaFayette school district for 33 years. He retired from education in 1968.

Mr. Grimshaw frequently spoke at the Episcopal Church of the Good Shepherd on the Onondaga Nation.

He was a lay reader and guest preacher at St. Mark’s Episcopal Church in Jamesville for more than 20 years. He was most recently a communicant of the Church of the Saviour on James Street.

His wife of 53 years, the former Mary Alice Atkyns, died in 1987. Their only son, Richard, died in 1994.

Surviving are two grandsons, David G. of Black Rock, Conn., and Paul G. of Myrtle Beach, and a daughter-in-law, Betty Grimshaw, with whom he had been living for the past three years.

Memorial services are 11 a.m. Thursday in the Church of the Saviour, 437 James St. The family will receive friends in the parish hall after the service.

A private burial is in Maplewood Cemetery, LaFayette.

Contributions may be made to the Church of the Saviour or the American Red Cross.

Greenleaf Funeral Home has arrangements.

Post-Standard, The (Syracuse, NY)

Date: August 19, 1997

Edition: Metro

Page: B4

Record Number: 9708190329

Copyright, 1997, The Herald Company

Source: http://infoweb.newsbank.com

 

Post-Standard, The (Syracuse, NY) – December 23, 1987
Deceased Name: MARY A. GRIMSHAW, 77, DIES

Mary A. Grimshaw, 77, of 2344 Clark Hollow Road, LaFayette, died Tuesday at Community-General Hospital. Mrs. Grimshaw was a native of Norwich. She taught in the Sherburne area and was a substitute teacher in the LaFayette Central School District. [Webpage author’s note: the date of death was 22 December 1987.] Mrs. Grimshaw was a graduate of Norwich Teacher Training School and attended Syracuse University. She was a member of the advisory board of the Syracuse Memorial Society. She was a nurse’s aide many years with the American Red Cross and was active in its blood progam. Mrs. Grimshaw also served as Onondaga County coordinator for the Herald-Tribune Fresh Air Fund. Surviving are her husband, C. Grant; a son, Richard; and two grandsons, Paul of DeWitt and David of Hoboken, N.J. Memorial services will be at 11 a.m. Saturday in the Church of the Saviour, the Rev. Andrew Barasda officiating. Burial will be in Maplewood Cemetery, LaFayette. There will be no calling hours. Contributions may be made to the auxiliary of the Church of the Good Shepherd on the Onondaga Indian Nation. Greenleaf Funeral Home has charge of arrangements.  Post-Standard, The (Syracuse, NY)
Date: December 23, 1987
Edition: All
Page: B2
Record Number: 8712230173
Copyright, 1987, The Herald Company 

 

Source: http://infoweb.newsbank.com

 

Where Was C. Grant Grimshaw From?

The obituary above notes that C. Grant Grimshaw was born in Adams and taught in a one room school in Lorraine in Jefferson County, New York. Figures 3 and 4 show maps of the location of Adams and Lorraine in relation to C. Grant Grimshaw Elementary School.

Figure 3. Map showing location of C. Grant Grimshaw’s birthplace. Adams is indicated by the red star in the middle of the map. Lorraine can be seen about five miles to the southeast. 

These communities are ; Adams can be seen on the middle map above.

Figure 4. Map showing location of Adams in relation to C. Grant Grimshaw Elementary School. Adams (red star) is located about 80 miles north of LaFayette (halfway between Syracuse and Tully), where the school is located.

Which Grimshaw Line is C. Grant Grimshaw Descended From?


C Grant Grimshaw (originally named Grant Charles Grimshaw) is descended from Joseph Grimshaw, Quaker immigrant from Yorkshire (see companion webpage), and his second wife, Elizabeth Jane Booth Mitchell-Hadden, who were his great-great-grandparents. The descendant chart for C Grant Grimshaw, shown below, is based on information developed by Henry C Grimshaw and provided by Alida Isham Milham.

 

|—-|—-|—-|—-Abraham Grimshaw (7 Nov 1731/1732 – 7 May 1786) & Ellen/Eleanor Whalley (1744 – 1801)

|—-|—-|—-|—-|—-Joseph Grimshaw* (5 Apr 1765 – 27 May 1841) & Elizabeth Jane Booth Mitchell-Hadden (1774 – 1851)

|—-|—-|—-|—-|—-|—-Joseph Grimshaw (5 Jul 1810 – 22 Mar 1880) & Mary Ann Adsit (27 Apr 1809, Steuben, New York – 17 Feb 1891, Lorraine, New York). Married 10 May 1832, Steuben, NY

|—-|—-|—-|—-|—-|—-|—-George Wooster Grimshaw

|—-|—-|—-|—-|—-|—-|—-Henry L Grimshaw 

|—-|—-|—-|—-|—-|—-|—-Benjamin Joseph Grimshaw

|—-|—-|—-|—-|—-|—-|—-Stephen A Grimshaw (16 Jun 1838, Lorraine, NY –11 Jan 1907, Lorraine, NY) & Salinda R Borden (25 Sep 1837, Panantine Brg, NY – 25 Jun 1934, Adams, NY). Married 27 Dec 1860. 

|—-|—-|—-|—-|—-|—-|—-|—-Minnie A Grimshaw

|—-|—-|—-|—-|—-|—-|—-|—-Charles B Grimshaw*(1 Aug 1865, Lorraine, NY – 27 Jul 1932, Adams, NY) & Emma Flaherty (20 Nov 1870, Worth, NY – 18 Sep 1894, Lorraine, NY)

|—-|—-|—-|—-|—-|—-|—-|—-|—-Hollis F Grimshaw

|—-|—-|—-|—-|—-|—-|—-|—-|—-Raymond Grimshaw

|—-|—-|—-|—-|—-|—-|—-|—-Charles B Grimshaw(1 Aug 1865, Lorraine, NY – 27 Jul 1932, Adams, NY) & Cora VanBrocklin (19 Apr 1867, Redwood, NY – 19 Jan 1960, Adams, NY)

|—-|—-|—-|—-|—-|—-|—-|—-|—-Ivan Grimshaw

|—-|—-|—-|—-|—-|—-|—-|—-|—-Grant Charles Grimshaw (31 Jul 1904, Adams, NY – 16 Aug 1997, Syracuse, NY) & Mary Atkyns (6 Jun 1910, Norwich, NY – 22 Dec 1987, Syracuse, NY). Married 21 Dec 1929.

|—-|—-|—-|—-|—-|—-|—-|—-|—-|—-Richard Grant Grimshaw 3 Oct 1930, Sidney, NY – 1994) & Betty Jean Dietz (4 Aug 1931, Baltimore, MD – ?). Married 22 Aug 1954.

 

|—-|—-|—-|—-|—-|—-|—-|—-|—-|—-|—-David Grant Grimshaw ( 24 Jan 1956, Syracuse, NY
– 30 Apr 2001) &
Meredith Vanden Handel

|—-|—-|—-|—-|—-|—-|—-|—-|—-|—-|—-Paul Richard Grimshaw (9 Jun 1960 – ?)

|—-|—-|—-|—-|—-|—-|—-|—-|—-Stephen Allen Grimshaw

|—-|—-|—-|—-|—-|—-|—-|—-Armitta (Mittie) Alice Grimshaw & Henry Roy Peck

|—-|—-|—-|—-|—-|—-|—-Joseph Grimshaw (16 Feb 1840 – 2 Feb 1901) & Melissa M Borden?

|—-|—-|—-|—-|—-|—-|—-Clinton M Grimshaw & Nelli A ?

|—-|—-|—-|—-|—-|—-|—-Adelbert Grimshaw (died young)

|—-|—-|—-|—-|—-|—-|—-Charles DeLos Grimshaw ( 8 Apr 1850 – Jan 1816) & Frances (Fanny) Keziah Oatman. Married 24 Nov 1872.

|—-|—-|—-|—-|—-|—-|—-Anna Polly Grimshaw [adopted] (Jul 1853 – 5 Feb 1884) & William R Grow (1852 – ?). Married 1878.

C. Grant Grimshaw and His Wife, Mary, Are Buried in LaFayette, NY

C. Grant and Mary Grimshaw, and their son Richard Grimshaw, are buried in Berwyn (Maplewood) Cemetery in LaFayette, as indicated on the following webpage:

http://www.rootsweb.com/~nyononda/CEMETERY/BERWYN.HTM 

Their records on this webpage appear as follows:

Grimshaw, C. Grant 1904-1997

Grimshaw, Mary A. 1910-1987 (d. 12/1987, Sec. D #27)

Grimshaw, Richard G. 10/3/1930-3/10/1994, US Army, Korea (Sec. D #27)

David Grant Grimshaw, C. Grant Grimshaw’s Grandson and ALS Victim 

David Grant Grimshaw, grandson of C. Grant Grimshaw was stricken with ALS (also known as Lou Gehrig’s Disease) and died in 2001. David was Chairman of the Connecticut chapter of the ALS Association and was also an accomplished painter. David’s passing was noted as follows on the website of the Connecticut chapter (http://www.alsact.org/inspiration2.asp):

 

David Grant Grimshaw
1/24/56 to 4/30/01

On April 30th, our chapter lost a special man, Mr. David Grant Grimshaw. David served as President of the Black Rock Community Council for 4 years; he helped to establish the Burroughs Community Center in Bridgeport; he was co creator of Bridgeport’s Lobsterfest; and he was instrumental in the restoration of the Fayerweather Lighthouse at Black Rock Harbor. David was also an internationally known artist. David was diagnosed with ALS, or Lou Gehrig’s disease, on his 40th birthday. David then became chairman of The ALS Association Connecticut Chapter. Below are some examples of David’s work, as well as photos of David with close friends and family. David will be sorely missed by many.

 

The Connecticut chapter website also includes two photos of David and his mother, wife and friends (Figure 6).

Figure 6. Photos of David Grant Grimshaw and his mother and friends of the Connecticut Chapter of the ALS Association. Source: http://www.alsact.org/inspiration2.asp 

Top: Andy Byrne, Betty Grimshaw (David’s Mother), and Meredith Vanden Handel (David’s Wife) Bottom: David Grant Grimshaw

Dr. Dan Rudolph, Board Member; Andy Byrne, and David Grimshaw

The Connecticut Chapter website also includes two paintings by David Grant Grimshaw (Figure 7).

Figure 7. Two paintings by David Grant Grimshaw as presented on the website of the Connecticut Chapter of the ALS Association.

“Fayerweather Island Light”
From an oil painting by David Grant Grimshaw
©Copyright 1998

“Pears and Landscape, Tuscany”
Oil on Canvas, 30×36
David Grant Grimshaw
©Copyright 1998

An obituary of David Grimshaw is given in “America’s Obituaries & Death Notices and is shown below. It provides information on David and his accomplishments before he succumbed to ALS.

43

Post-Standard, The (Syracuse, NY) – May 8, 2001

Deceased Name: DAVID G. GRIMSHAW

David Grant Grimshaw, 45, of Black Rock, Conn.,died April 30 at home after a five-year battle with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.

Born in Syracuse, he attended Syracuse University. He worked as a journalist in the Syracuse area before moving to the New York City area, where he worked in journalism and publishing. He moved to Connecticut and began a second career in art, creating oil paintings that sold in Central New York and Europe. He served as president of the Connecticut chapter of the National ALS Association.

Survivors: His wife, Meredith Vanden Handel; his mother, Betty Grimshaw of South Carolina; a brother, Paul of South Carolina.

Memorial services: 3 p.m. Saturday in Trinity Episcopal Church, Southport, Conn. Shaughnessey Funeral Home, Fairfield, Conn., has arrangements.

Contributions: ALS Association of Connecticut, 125 Main St., Westport, CT 06880.

Post-Standard, The (Syracuse, NY)

Date: May 8, 2001

Edition: Final

Page: B4

Record Number: 0105080372

Copyright, 2001, The Herald Company

Source: http://grimshaworigin.org/grimshaw-origins-history/grimshaw-obituaries/ 

References

1Author

2Author

Home Page

Webpage initially posted November 2002. Completed in June 2004. Updated August 2006 with conjecture on Grant Grimshaw’s ancestry.

Additional Information on ALS

The Lou Gehrig’s Disease website has many informative questions and answers about ALS which are shown below after the website address.

http://www.lougehrigsdisease.net/als_what_is_als.htm#What%20is%20ALS?

 

What is ALS?

 

ALS is a fatal neuromuscular disease characterized by progressive muscle weakness resulting in paralysis.


What do the letters ALS stand for?

ALS stands for Amyotrophic Lateral Sclerosis. Like many medical terms it comes from Greek words.

A–—without
Myo–—muscle
Trophic–—nourishment
Lateral–—side (of the spinal cord)
Sclerosis–—hardening or scarring

For more definitions of ALS related terms, please go to the Dictionary page.


When was ALS first discovered?

ALS was first described in scientific literature in 1869 by the French neurologist Jean-Martin Charcot.


Are there are other names for ALS?

ALS is commonly known in the US as Lou Gehrig’s Disease. In England it is known as MND, Motor Neurone Disease. The French refer to ALS as Maladie de Charcot.


Is there a cure for ALS?

There is no cure for ALS, but there is a great deal of promising research going on now.


How long do people with ALS live?

50% of ALS patients die within 18 months after diagnosis. Only 20% survive 5 years and 10% live longer than 10 years. Persons with ALS who go on a ventilator may live for many years. Improved treatment is allowing ALS patients to live longer than before.


What are the symptoms of ALS?

 

ALS symptoms may include tripping, stumbling and falling, loss of muscle control and strength in hands and arms, difficulty speaking, swallowing and/or breathing, chronic fatigue, and muscle twitching and/or cramping. ALS is characterized by both upper and lower motor neuron damage. Symptoms of upper motor neuron damage include stiffness (spasticity), muscle twitching (fasciculations), and muscle shaking (clonus). Symptoms of lower motor neuron damage include muscle weakness and muscle shrinking (atrophy).

In “ALS: A Comprehensive Guide to Treatment”, Dr Mitsumoto lists upper motor neuron signs as spasticity, hyperreflexia, and pathological reflexes (Babinski’s sign – the one where they run an object from the heel to the big toe). Lower motor neuron signs are listed as muscle weakness, truncal muscle weakness, muscle atrophy, fasciculations, hyporeflexia, hypotonicity or flaccidity, and muscle cramps. Bulbar signs are listed as dysarthria (speech problems), dysphagia (swallowing problems), and sialorrhea (drooling).


Is ALS painful?

The motor neuron damage and muscle atrophy caused by ALS is not painful. Some of the effects of ALS may be painful. Common pains as a result of ALS include pressure sores, muscle cramps, joint contractures, constipation, burning eyes, swelling feet, and muscle aches. For more information on pain and ALS, please go to the Pain Management And Prevention page.


Is ALS contagious?

ALS is not contagious.


Is ALS hereditary?

At least 10% of ALS cases are hereditary. This is called familial ALS. Generally, we define familial ALS as two or more cases in the same bloodline. In familial ALS the disease is autosomal dominant, meaning that if a parent has ALS, their children have a 50% chance of inheriting the defective gene. While the risk of inheriting the defective gene is 50% for each child of an affected person, not all people with the defective gene will develop the disorder. Twenty percent of familial ALS cases have a specific gene defect in the SOD (super oxide dismutase) gene. 90% of ALS cases have no familial link, and they are called sporadic ALS. For more information about familial ALS, go to this page: Online Mendelian Inheritance in Man.


What causes ALS?

The cause of ALS is unknown. Researchers know that an excess of a neurotransmitter called glutamate clogs the synapse of the nerve cell preventing transmission of neural impulses. The cause of this neurotransmitter problem remains a mystery, although there are several theories which may provide an explanation. For more information, please go to the Causes of ALS page.


Who gets ALS?

ALS occurs in both sexes and all races. Men are much more likely to get ALS than women. Older people are more likely to get ALS than younger people. For more information on ALS statistics, please go to the Vital Stats page.


Does ALS affect the mind?

ALS does not affect the mind. Mental acuity remains sharp. There have been some cases where ALS patients have experienced dementia, but it is unknown whether ALS was the cause of the dementia. In most cases, even when the patient is totally paralyzed, the mind functions normally.


How is ALS diagnosed?

ALS is diagnosed through a process of elimination and may take several months. Early ALS symptoms may be similar to a number of other neuromuscular diseases. Diagnostic tests include MRI (magnetic resonance imaging), EMG (electromyogram), muscle biopsy, and blood tests. In order for a definitive diagnosis of ALS to be made, damage must be evident in both upper and lower motor neurons. When three limbs are sufficiently affected, the diagnosis is ALS. For more information on criteria of diagnosis, please go to the ALS Diagnostic Criteria page. More information about EMG can be found at the following website: http://www.medicinenet.com


How long does it take to diagnose ALS?

The diagnosis of ALS typically takes weeks or months. Many of the initial symptoms are similar to other neuromuscular diseases. Diagnosing ALS is a process of elimination which is often time consuming.


What treatments are available?

There is one FDA approved drug, Rilutek, which slows progression of the disease. There are a number of other medications to help relieve symptoms of ALS. Therapies, supplements, and proper nutrition can be part of a treatment plan. For more information, please go to the Treatments page


Are there any new, promising treatments for ALS?

Yes, due to the quantity of ALS research going on now, new potential treatments are being discovered on a regular basis. An example of a promising new treatment is the over-the-counter supplement called creatine. Recently, creatine was shown to be effective in preventing ALS in studies on mice. For more information, please go to the Treatments page.

What kind of research is being done to find a cure for ALS?

There are a number of research studies going on now which may show promising results in slowing ALS progression. There has been more ALS research in the past five years than in the prior 150 years. Research on related neurological diseases such as Alzheimer’s and Parkinson’s is on the increase and may have positive results for ALS.


Are there any medications to stop the progression of ALS?

There are no medications which stop ALS progression. Rilutek is the only FDA approved medication to help slow down the progression of ALS. There are many drug studies going on now involving substances which may be able to slow down or stop the disease. A number of drugs are available to help manage the symptoms of ALS. Vitamins and antioxidants are taken by many ALS patients in an effort to slow down the disease. For more information, please go to the Treatments page.


How common is ALS?

The incidence of ALS is about two per 100,000. This means that for every 100,000 people, two will get ALS. The prevalence of ALS is about 11 per 100,000. This means that if you look at a population of 100,000 people, 11 of them will be living with ALS. In the United States, approximately 30,000 people are living with ALS. There are about 5,000 new cases per year, or 15 per day.


Are there different types of ALS?

There are three types of ALS. The most common type is called sporadic ALS. This type of ALS is not hereditary and accounts for 90% of ALS cases. Familial ALS is hereditary, is passed on by a dominant gene and accounts for nearly 10% of ALS cases. The third type of ALS is called Guamian and is related to the high incidence of ALS on the island nation of Guam.


Is ALS always a fatal disease?

ALS is almost always fatal. There are rare cases where the disease progression plateaus or stops. There are a few cases of people reporting a reversal of symptoms. If an ALS patient opts for a ventilator, he or she can live for many years with the disease.


Do ALS patients suffer painful, suffocating death?

In the majority of cases, ALS patients die painlessly and peacefully, often in their sleep. If an ALS patient does not opt for a ventilator to assist breathing, death is usually a result of insufficient oxygen which leads to a build-up of carbon dioxide in the blood. The build up of carbon dioxide has a narcotic effect on the patient making him or her sleepy. Many ALS patients also opt for medications to ease breathing discomfort and anxiety. ALS patients often choose to die in a hospice setting or at home where they can be comforted by their loved ones.


What is the cause of death for ALS patients?

A common cause of death among ALS patients is respiratory failure or cardiac arrhythmias due to insufficient oxygen. Another common cause of death is respiratory infection such as pneumonia. The risk of respiratory infections increases as weakened diaphragm and chest muscles make it more difficult to clear the lungs.


Is ALS a disease of the muscles or nerves?

ALS is a disease of the motor nerves, specific nerve cells in the brain and spinal cord that control voluntary movement. Motor nerves attach to muscles and when the motor nerves gradually degenerate and die, the muscles no longer receive nerve impulses. As a result of the nerve death, the muscles atrophy and waste away. When an ALS patient first notices neurological symptoms, more than half of the motor neurons may already be dead. The body has a remarkable ability to compensate for nerve loss and new nerves grow at the same time other nerves are dying. Eventually, nerve death becomes so pervasive that muscle paralysis is the result. To learn how nerves and muscles work, go to Neurology 101.


Which muscles are affected first?

Most ALS patients first notice muscle weakness in either the arms or the legs (32 percent in the arms and 36 percent in the legs.) This is called limb-onset ALS. Approximately 25% of ALS patients have difficulty speaking as their first symptom. This is called bulbar ALS because it involves the corticobulbar area of the brainstem. ALS is a very variable disease, and there are also cases affecting breathing first, without any other symptoms. Approximately 7 percent have difficulty breathing (dyspnea) as their first symptom.


Are there muscles that are not affected?

ALS does not affect all muscles. Bowl and bladder control remains intact as does sexual function. The heart muscle is unaffected. The muscles of the eyes are the last ones affected and, in some cases, are not afflicted.


How does ALS typically progress?

ALS progression can vary considerably with different patients. A common progression is as follows: difficulty walking resulting in the use of a cane followed by a walker and then a wheelchair. As the legs get weaker so do the arms and hands. The patient loses the ability to write, type, and feed themselves. As the muscles of the limbs become weaker, difficulties in speaking and swallowing begin to occur. This may result in the need for an augmentative communication system in order to communicate and a feeding tube in order to get adequate nutrition. Typically, the ALS patient has a gradual decrease in lung vital capacity as the muscles of the chest and the diaphragm begin to weaken. When lung vital capacity drops below 50%, the ALS patient needs to consider using a ventilator in order to stay alive. This progression may be as quick as six months or as long as several years.


Does exercise help slow ALS progression?

Exercise does not slow down the wasting of muscles due to ALS. Heavy exercise is not recommended because of the fatigue it causes on already weakened muscles. Light exercise such as walking, swimming, and stretching can help maintain strength in the muscles which are not yet affected by ALS. When muscle atrophy becomes severe, the only recommended exercise is range of motion to preserve joint flexibility.


Does ALS affect speech?

ALS does affect speech and swallowing when the disease involves the corticobulbar area of the brainstem. As the muscles of the mouth and tongue weaken, speaking becomes increasingly difficult. Speech therapy may be helpful to an ALS patient and can enable the person to be understood even with a weak voice. Eventually, ALS patients lose the ability to speak and must rely on an augmentative communication device in order to communicate. Please go to the Adaptive Equipment page in order to learn more about augmentative communication devices.


What is Bulbar ALS?

Bulbar refers to the brain stem where motor neurons are concentrated. Bulbar ALS is the type of ALS where speaking and swallowing difficulties are the first symptoms. Many patients with bulbar ALS are unable to speak or eat but are able to walk and write. Bulbar-onset ALS patients generally have a faster disease progression than do limb-onset patients. Limb-onset patients eventually develop bulbar symptoms as their disease progresses.


What is the average age of ALS onset?

The average age of ALS onset is 55. ALS can affect people at any age, and cases have been found in persons as young as 12 and as old as 98. 80% of ALS cases begin between the ages of 40 to 70. There appears to be a trend of more younger patients in their 20’s and 30’s being diagnosed with ALS


Is ALS caused by environmental factors?

The cause of ALS in most cases is unknown, although environmental factors are strongly suspected. A higher incidence of ALS is correlated with exposure to agricultural chemicals and solvents. For more information on theories of ALS causation, please go to the Cause of ALS page.


Why is ALS called Lou Gehrig’s disease?

In the U.S., ALS is known as Lou Gehrig’s disease due to the fact that the famous baseball player, Lou Gehrig, died from the disease in 1941. Lou Gehrig played for the New York Yankees and was one of the best baseball players ever. He got ALS in 1939 at the age of 38. For more information about Lou Gehrig, please go to the About Lou page.


How do ALS patients eat when they lose their ability to chew and swallow?

As muscle weakness makes eating more difficult, dietary consistency changes are needed. Gradually the diet includes softer foods and eventually may consist of puréed foods. When eating becomes too tiring or causes problems with choking, many ALS patients opt for a feeding tube. This is a relatively simple procedure which can greatly extend the quality and quantity of an ALS patient.


Is there equipment available to help ALS patients breathe?

Daily exercise with a spirometer helps to keep the chest muscles from tightening. Non invasive ventilation such as bi-pap can greatly extend the time before an ALS patient will require a ventilator. For more information on breathing equipment, please go to the Adaptive Equipment page.


Do all ALS patients become bedridden?

Many ALS patients do not remain bedridden even though they may be totally paralyzed. Specially designed wheelchairs and lightweight, portable ventilators allow the patient to be mobile. Improvements in technology allow paralyzed ALS patients much more freedom of movement than in years past.


What other health problems are caused by ALS?

There are several health problems that can occur as a result of the immobility caused by ALS. All of these health problems are treatable. They include: skin breakdown which can lead to bed sores; problems with constipation and painful joint contractions resulting from lack of movement.


Is depression common among ALS patients?

Depression is common among ALS patients and may be more common among caregivers. Depression can be minimized through the use of antidepressant medication, counseling, and a strong network of supportive family and friends.


Is ALS an expensive disease?

ALS is a very expensive disease. The only FDA approved medication, Rilutek, costs approximately $700 a month. Other medications to treat ALS symptoms are also expensive. Adaptive equipment is expensive. A power wheelchair with tilt and recline features may cost $17,000. A home health aid for 10 hours a day may cost more than $30,000 a year. When an ALS patient goes on a ventilator, he or she will require skilled nursing care. This may cost in excess of $250,000 a year. Insurance companies may pay some of these expenses. Medicare and Medicaid may pay some of these expenses. For more information, please go to the Legal and Financial page.


What do the terms PALS and CALS mean?


PALS stands for “Person(s) with ALS.” CALS stands for “Caregiver(s) of PALS.” For more definitions of ALS related words, please go to the Dictionary page.


Are there any famous people who have or had ALS?

 

The most famous person living with ALS is noted British physicist Stephen Hawking. He has been living with ALS for more than 35 years. He is able to move only two fingers. Other notable people who have had ALS are actor David Niven, baseball players Lou Gehrig and Catfish Hunter, U.S. Senator Jacob Javits and Soap Opera star Michael Zaslow.


What is it like to live with ALS?

I have a Journal on my website where I have written down my thoughts about living with ALS for the past three years. If you go to my References page, you will find several books written by people with ALS.


What does ALS muscle atrophy look like?

How my body looks after battling ALS for 4+ years (since initial symptoms)

As I promised, I have some pictures that show you the ravages of ALS. My hands and my feet are curled and shriveled. You can see the tremendous amount of muscle atrophy in my arms and chest. It is scary for me to look at my body when I don’t have any clothes on. I think I look like a concentration camp victim. I am hoping that now I feel stronger, that maybe I will regain some of my muscle mass.


Is there anything I can do to help find a cure for ALS?

Make a Donation to fight ALS. How You Can Help is a page that shows how you can help me and other PALS by donating time and/or money to support our cause and raise public awareness about ALS.