Welcome to my blog. I have had ALS for 10 years now.


Since I started this blog in June 2008 I've had amazing feedback. Family, friends, people from all over North America, Australia, Scotland, England, and places I can't recall, have commented, encouraged and corresponded. I had no idea when Cynthia taught me how to set this up, how much I would love posting and how many people would read it. I want to say THANK YOU to everyone who has helped propel this therapeutic exercise into a daily routine. All of you, both friends and visitors, are now part of my blog family. Welcome.

From Go Pro

From Go Pro
View from my living room

Thursday, January 27, 2011

MND

Four kinds of MND
There are four main kinds of Motor Neurone Disease. Familial inheritance can play a role in a small number of cases.

Amyotrophic Lateral Sclerosis (ALS)

ALS is the most common form of MND resulting in around 75% of cases.

Involves both upper motor neureones from the brain and neurones from the brain stem, spine and lower motor neurones (upper motor neurones descend from the brain to the brain stem and the spinal cord; lower motor neurones extend from the brain stem and the spinal cord to the muscles).

Characterised by muscle weakness, spasticity, overactive or over responsive reflexes and inappropriate emotional responses.

Most cases are recorded in over 60’s.

Males vs Female cases are around 3:2.

Average survival two to five years.


Progressive Bulbar Palsy (PBP)

Affects approximately 25% of people with MND

Both upper and lower motor neurones may be involved.

Characterised by dysarthria (difficulty in articulating words) and dysphagia (difficulty in swallowing).

Lower motor neurone damage causing nasal speech, regurgitation of fluid via the nose, tongue atrophy (wasting away) and fasciculation (muscle twitching) and pharynx (tube between mouth and stomach) weakness. Upper motor neurone damage is characterised by a spastic tongue, explosive dysarthria and inappropriate emotional responses. Muscles in the upper limbs and shoulder girdle may also become progressively weaker.

PBP mostly occurs in older people, slightly more common in women.

Survival from onset of symptoms is usually between six months to three years.

Primary Lateral Sclerosis (PLS)

A rare form which affects the upper motor neurones only.

Characterised by spastic quadriparesis (spasms in all limbs), inappropriate emotions and spastic dysarthria.

Age of onset fifty years.

Average survival rate of twenty years.

Progressive Muscular Atrophy (PMA)

Affects approximately seven and a half per cent of people with MND.

Predominantly lower motor neurone degeneration.

Causes muscle wasting and weakness (often starting in the fine motor muscles of the hand) with loss of weight and fasciculation (muscle twitching).

Age of onset is usually under fifty years (male are more affected than females in the ratio of 5:1).

Majority of people surviving beyond five years.

Every case is individual. There is considerable overlap between these forms of MND. In particular, in time, people with PMA develop upper motor neurone involvement, and in both PMA and ALS most people eventually experience speech and swallowing difficulties in varying degrees.

All causes of Motor Neurone disease are not yet known but it is thought to be multi-factorial. Considerable research is being undertaken worldwide and encouraging advances are being made in understanding both the disease process and the way in which motor neurones function. Clinical trials have focused on treatments that might have a positive impact on the course of the disease by increasing life expectancy and/or slowing down the rate of progression of symptoms. It must be stressed that MND affects each individual very differently, in respect of symptoms in the initial stages, the rate of progression of the disease and survival time after diagnosis.

At present there is no cure for MND but much can be offered in the management of symptoms.

Please consult your doctor for advice specific to your individual situation.

Updated Tuesday 11 Jan 2011

Quote for the month

Three passions have governed my life:
The longings for love, the search for knowledge,
And unbearable pity for the suffering of [humankind].

Love brings ecstasy and relieves loneliness.
In the union of love I have seen
In a mystic miniature the prefiguring vision
Of the heavens that saints and poets have imagined.

With equal passion I have sought knowledge.
I have wished to understand the hearts of [people].
I have wished to know why the stars shine.

Love and knowledge led upwards to the heavens,
But always pity brought me back to earth;
Cries of pain reverberated in my heart
Of children in famine, of victims tortured
And of old people left helpless.
I long to alleviate the evil, but I cannot,
And I too suffer.

This has been my life; I found it worth living.

adapted

Bertrand Russel

Sunday, January 23, 2011

My school friends from 48 yrs. ago



I hadn't seen some of these classmates since I was 17. I attended St. Margaret's School in Victoria for grades 11 & 12 and this is where I met these wonderful people. As the years go by you form other connections, move away, or simply get busy with "God knows what" and lose contact.
Perhaps we spend too much time aspiring to be best in our profession, the best parents, or in my case, simply to be. Perhaps.
It will be on the discussion agenda for our next get together--however we have far too much to laugh about to ever follow an agenda! I can't even follow my grocery list--but then again--how could I? I Always forget it.

Thursday, January 20, 2011

Sunday, January 16, 2011

Protect your eyes

Friday, January 14, 2011

A special snowman

My niece Kristina and my nephew Jamie, built this snowman for me.
I never got to meet him as he melted
4 hrs. later. So sad. He didn't get a chance "to dance around." Maybe next time.
Thanks for thinking of me in the Nanaimo snow-belt.

Wednesday, January 12, 2011

My new camera attachment

My brother made me a camera stand for my chair--it also has an attachment for a wine bottle.
All I need is a straw!
The camera now stays steady for my shaky hands. I can reach the buttons and the head is fully adjustable. In the near future I'll need a camera with remote functions--but for now, I'm a happy "snapper."






Monday, January 10, 2011


Expert: Paul Cellucci could live with ALS for years

By Jessica Heslam
Saturday, January 8, 2011 -

Former Bay State Gov. Paul Cellucci, who revealed this week he’s battling Lou Gehrig’s disease, has a tough road ahead but could live with the debilitating disease for years to come, one leading expert said yesterday.

“The average age of survival after diagnosis is two to three years. If you get good quality clinical care, which we’re blessed with here in Massachusetts, the average survival time is probably longer,” said Dr. Steven Perrin, CEO and chief scientific officer of the ALS Therapy Development Institute in Cambridge.

“It’s probably more like four to five years. . . It goes to the extreme. We’ve seen patients surviving 10 or 15 years with the disease. We don’t understand why the progression rate differs from individual to individual. A lot of it is genetic background,” Perrin added.

ellucci, a 62-year-old grandfather and former U.S. ambassador to Canada, said in a statement that he’s had symptoms of amyotrophic lateral sclerosis for four years. The Herald reported yesterday that the Hudson native began confiding in close friends this week as his incurable condition worsened.

Cellucci went public Thursday, sparking well wishes from countless old friends, political allies, reporters who covered him at the State House as well as people he campaigned for, said Rob Gray, his former campaign manager.

“It was quite an outpouring,” Gray said yesterday.

While there is no cure for the disease, Perrin lauded the Bay State doctor treating Cellucci, Dr. Robert H. Brown Jr., and said he heads one of the best ALS clinics in the country. Perrin called Brown a “very, very experienced” neurologist who has an “unbelievable” bedside manner.

Brown, chairman of Neurology at the University of Massachusetts Medical School and UMass Memorial Medical Center, is declining interviews, citing Cellucci’s privacy. Cellucci declined comment yesterday.

The Massachusetts chapter of the ALS Association said in a statement it was “saddened” to learn of Cellucci’s diagnosis, saying the disease “takes a terrible toll on patients and their loved ones.”

“The entire ALS Association family is thinking of the governor and his loved ones right now, and the association as a whole is here to be a resource and offer support for Paul Cellucci and all those affected by ALS,” said Jen Natoli, spokeswoman for the nonprofit organization.

A Cellucci friend said the former governor plans to become as supportive of the local ALS community and organizations as he can be over the next few years and he appreciates their well wishes.

Dave Wedge contributed to this

Friday, January 7, 2011

Sunday, January 2, 2011

Canuck Place at Christmas


Only 15 blocks from my home, is Canuck Place. I went there one evening and took photos. What A beautiful old house.

Canuck Place Children's Hospice provides specialized pediatric palliative care for children living with a life-threatening illness and support for their families throughout British Columbia.