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

Saturday, December 29, 2012

I'M STILL WAITING FOR A BED

Tuesday, November 27, 2012


I'm alive and somewhat well. A hospital bed will come available soon and then I'll be admitted for a tracheostomy. I'll be in hospital[VGH] 3-4 weeks.

Monday, October 8, 2012


This is my Mother and her Father. They went to New Glasgow, Nova Scotia to visit my Great Aunt Lizzie. Mum and I went to visit many years later when I was about the same age she was in the photo.

Thursday, October 4, 2012


This is a photo of my twin cousins, my sister Cheryle, and me. What can I say? There weren't enough dress-up dresses to go around and I was the youngest.

Thursday, September 27, 2012


I'm still here but exhausted with changes to my body and therefore changes in daily routine. It's difficult to type so I've been going to G.F. Strong to practise Eyegaze. I now have supplemental feedings through my feeding tube,etc., etc. It's all challenging but I'm managing. I thank all the many people that keep me sane and tend to my changing needs.
at the market last week.

Tuesday, September 4, 2012


Emily says, "Good Morning."

Friday, August 31, 2012


Saturday, August 25, 2012


Just wanted you to know I'm still here but having several issues to deal with so very busy.

Monday, July 23, 2012


Most of the shadows of this life are caused by our standing in our own sunshine. Ralph Waldo Emerson

Wednesday, July 18, 2012


1963--winning high point trophy at Pacific National Exhibition. Sugarfoot, my horse, was a great friend and very clever. She would often open the gates and lead the other horses to greener pastures. Needless to say, she wasn't a favorite of our neighbours.

Sunday, July 15, 2012

This is my brother Ken. Cheryle and I once babysat him and now he babysits me. LOL.

Tuesday, July 10, 2012


Friday, July 6, 2012


Saturday, June 30, 2012


Monday, June 25, 2012


This was my sister's 13th birthday party. She is 3rd from the left. I'm at the front on the far right(the one with braids--or pig tails). I would be 10. Photo 1956.

The tragedy of life is not death, but what we let die inside us while we live

Friday, June 22, 2012


Saturday, June 16, 2012


Spring Poppies--photo by Libby

Friday, June 15, 2012

Thank You Gloria--it's about time.


NewsEventsWeatherProgramsVideoAudioContact Us Assisted-suicide ban struck down by B.C. court Judge rules law discriminates against the disabled CBC News Posted: Jun 15, 2012 11:35 AM PT Last Updated: Jun 15, 2012 6:22 PM PT Read 390 comments390 Assisted suicide2:19 Facebook 222 Twitter 90 Share 312 Email Related Stories The fight for the right to die Should Canadians have the legal right to assisted suicide? Quebec panel backs MD-assisted suicide in 'exceptional' cases External Links Supreme Court of B.C. judgement: Carter v. Canada (Note:CBC does not endorse and is not responsible for the content of external links.) RAW Euthanasia6:13RAW Civil liberties4:06 A British Columbia Supreme Court judge has declared Canada's laws against physician-assisted suicide unconstitutional because they discriminate against the physically disabled. In a 395-page ruling released Friday, Justice Lynn Smith addressed the situation faced by Gloria Taylor, a B.C. woman who was one of five plaintiffs in the case seeking the legal right to doctor-assisted suicide. Taylor has ALS, or Lou Gehrig's disease, a fatal neurodegenerative disease, and she sought the ruling to allow her doctor to help her end her life before she becomes incapacitated. The case was fast-tracked in August because of her illness. In her ruling, Smith noted suicide itself is not illegal, and therefore the law against assisted suicide contravenes Section 15 of the charter, which guarantees equality, because it denies physically disabled people like Taylor the same rights as able-bodied people who can take their own lives, she ruled. "The impact of that distinction is felt particularly acutely by persons such as Ms. Taylor, who are grievously and irremediably ill, physically disabled or soon to become so, mentally competent and who wish to have some control over their circumstances at the end of their lives," Smith writes. "The distinction is discriminatory … because it perpetuates disadvantage." Smith also says the law deprives both people like Taylor and those who try to help them of the right to life and liberty guaranteed under Section 7 of the charter. Your Community Should Canadians have the legal right to assisted suicide? She argued the legislation could force a person to take their life sooner than they want to in order to kill themselves while still physically capable. And Smith says the risk of incarceration denies the right of freedom to relatives who assist by taking their loved ones to jurisdictions where physician-assisted suicide is legal. The effect of the ruling will not be immediate, because Smith suspended it for one year in order to give Parliament time to take whatever steps it sees fit to draft and consider new legislation. But in the meantime, Smith granted Taylor a constitutional exception to seek physician-assisted suicide if she chooses to end her life. Gloria Taylor, of West Kelowna, B.C., asked the province's Supreme Court for the right to take her own life with a doctor's help as her health fades because of ALS. (CBC) The ruling will, if it stands up to an appeal, put Canada in the company of the Netherlands, Belgium, Luxembourg and Switzerland, countries which permit physician-assisted suicide. Three states in the U.S. also allow the practice. Smith's ruling also addresses the risks raised by defendants in the case. "The evidence shows that risks exist," she wrote. "But that they can be very largely avoided through carefully designed, well-monitored safeguards." At the end of the decision, Smith also stipulates that her ruling only apply to "competent, fully informed, non-ambivalent adult persons who personally (not through a substituted decision-maker) request physician-assisted death, are free from coercion and undue influence and are not clinically depressed."

Saturday, June 9, 2012


Were you around in these days?

Wednesday, June 6, 2012


I'm trying to get all my ducks in a row in order to give my respiratory doctor the go-ahead for booking me into VGH for a tracheostomy. There is a lot of preparation. I will be calling on friends to do some tasks in order to lighten the load for my Care Aides.

Wednesday, May 30, 2012


Sunday, May 27, 2012

Monday, May 21, 2012

Grief has become familiar to me

David Kessler & Elisabeth Kübler- Ross working on the five stages of grief On Grief and Grieving is Elisabeth Kübler-Ross’s final legacy, one that brings her life’s work profoundly full circle. On Death and Dying began as a theoretical book, an interdisciplinary study of our fear of death and our inevitable acceptance of it. It introduced the world to the now-famous five stages: denial, anger, bargaining, depression and acceptance. On Grief and Grieving applies these stages to the process of grieving and weaves together theory, inspiration and practical advice, all based on Kübler-Ross and Kessler’s professional and personal experiences. Elisabeth Kübler-Ross & David Kessler Denial, Anger, Bargaining, Depression and Acceptance The stages have evolved since their introduction and they have been very misunderstood over the past three decades. They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss as there is no typical loss. Our grief is as individual as our lives. The five stages, denial, anger, bargaining, depression and acceptance are a part of the framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief. Not everyone goes through all of them or in a prescribed order. Our hope is that with these stages comes the knowledge of grief ’s terrain, making us better equipped to cope with life and loss. Denial This first stage of grieving helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle. As you accept the reality of the loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface. Anger Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. The truth is that anger has no limits. It can extend not only to your friends, the doctors, your family, yourself and your loved one who died, but also to God. You may ask, “Where is God in this? Underneath anger is pain, your pain. It is natural to feel deserted and abandoned, but we live in a society that fears anger. Anger is strength and it can be an anchor, giving temporary structure to the nothingness of loss. At first grief feels like being lost at sea: no connection to anything. Then you get angry at someone, maybe a person who didn’t attend the funeral, maybe a person who isn’t around, maybe a person who is different now that your loved one has died. Suddenly you have a structure – - your anger toward them. The anger becomes a bridge over the open sea, a connection from you to them. It is something to hold onto; and a connection made from the strength of anger feels better than nothing.We usually know more about suppressing anger than feeling it. The anger is just another indication of the intensity of your love. Bargaining Before a loss, it seems like you will do anything if only your loved one would be spared. “Please God, ” you bargain, “I will never be angry at my wife again if you’ll just let her live.” After a loss, bargaining may take the form of a temporary truce. “What if I devote the rest of my life to helping others. Then can I wake up and realize this has all been a bad dream?” We become lost in a maze of “If only…” or “What if…” statements. We want life returned to what is was; we want our loved one restored. We want to go back in time: find the tumor sooner, recognize the illness more quickly, stop the accident from happening…if only, if only, if only. Guilt is often bargaining’s companion. The “if onlys” cause us to find fault in ourselves and what we “think” we could have done differently. We may even bargain with the pain. We will do anything not to feel the pain of this loss. We remain in the past, trying to negotiate our way out of the hurt. People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We do not enter and leave each individual stage in a linear fashion. We may feel one, then another and back again to the first one. Depression After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It’s important to understand that this depression is not a sign of mental illness. It is the appropriate response to a great loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on alone? Why go on at all? Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. The first question to ask yourself is whether or not the situation you’re in is actually depressing. The loss of a loved one is a very depressing situation, and depression is a normal and appropriate response. To not experience depression after a loved one dies would be unusual. When a loss fully settles in your soul, the realization that your loved one didn’t get better this time and is not coming back is understandably depressing. If grief is a process of healing, then depression is one of the many necessary steps along the way. Acceptance Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Most people don’t ever feel OK or all right about the loss of a loved one. This stage is about accepting the reality that our loved one is physically gone and recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live. We must try to live now in a world where our loved one is missing. In resisting this new norm, at first many people want to maintain life as it was before a loved one died. In time, through bits and pieces of acceptance, however, we see that we cannot maintain the past intact. It has been forever changed and we must readjust. We must learn to reorganize roles, re-assign them to others or take them on ourselves. Finding acceptance may be just having more good days than bad ones. As we begin to live again and enjoy our life, we often feel that in doing so, we are betraying our loved one. We can never replace what has been lost, but we can make new connections, new meaningful relationships, new inter-dependencies. Instead of denying our feelings, we listen to our needs; we move, we change, we grow, we evolve. We may start to reach out to others and become involved in their lives. We invest in our friendships and in our relationship with ourselves. We begin to live again, but we cannot do so until we have given grief its time. At times, people in grief will often report more stages. Just remember your grief is an unique as you are.

Friday, May 11, 2012


I'm still here--just busy with appointments and making important decisions about my future. I'll report more soon.

Thursday, May 3, 2012


photo S. Dow

Please help me find a cure


I’m participating in the WALK for ALS and I’d like to ask for your support. ALS is a fatal neuromuscular disease with no known cure, cause or effective treatment. The WALK for ALS supports provincial ALS societies and their programs to help people with ALS and their families, and the ALS Society of Canada’s investment in breakthrough research…help and hope! It is my hope that you will consider sponsoring me by making a secure online donation using your credit card. Click on the link below to donate now... http://my.e2rm.com/personalPage.aspx?SID=3343011&langPref=en-CA Thank you for your support! Karyn P.S. Here are some additional ALS facts: * Two to three Canadians die of ALS each day * Approximately 3,000 Canadians currently live with ALS * In at least 90% of cases, ALS strikes individuals with no family history of the disease * Between 5-10% have a familial form of ALS, devastating families for generations * ALS can strike anyone, regardless of age, sex or ethnic origin * While the usual age of onset is between 55 and 65, many younger people, often parents, are afflicted * Nearly 90% of people with ALS died within 5 years of diagnosis. While some live longer, others die within a few short months * ALS affects the whole family * ALS is a costly disease - emotionally, physically, and financially. For more information on how YOU can become a walker yourself, please visit www.walkforals.ca

Tuesday, May 1, 2012

Quest Diagnostics Announces C9orf72 Genetic Test for ALS (Lou Gehrig's Disease) The company's Athena Diagnostics business unit to unveil the new test at the American Academy of Neurology Annual Meeting this week in New Orleans MADISON, N.J. and WORCESTER, Mass., April 25, 2012 /PRNewswire via COMTEX/ -- Quest Diagnostics DGX +1.89% , the world's leading provider of diagnostic testing, information and services, today announced a new genetic testing service from its Athena Diagnostics business unit, a leader in neurology diagnostics, for amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. It is the first clinically available testing service for detecting hexanucleotide repeat expansion in the C9orf72 gene. Research published in the April 2012 issue of The Lancet found that this C9orf72 mutation was present in up to 39% of familial (inherited) ALS cases examined, and between 4-8% in sporadic (no known family history) cases, in a multi-national study population. The test is offered to aid in the diagnosis of familial and sporadic ALS.

Sunday, April 29, 2012


Don't ask.

Tuesday, April 24, 2012


Tuesday, April 17, 2012

My brain still works fine


Photo taken yesterday. LOL.

Wednesday, April 11, 2012

Frustration!!!

I'm getting rather temperamental these days--not part of my usual character. Why? Well, I cannot blow my nose(no diaphragm strength). I cannot lift my arms high enough to scratch my head(shoulder muscles gone). My hands are so weak that I can no longer hold most things or turn pages. I need a bionic arm. Most people cannot understand my ALS accent, so I do not talk much. A nice change for my friends! When I'm tired, my Care Aides have to brush my teeth. I supervise. At night I bite my cheeks because my face muscles are weak and my mouth is so dry. I have also noticed my smile is different. It will eventually disappear. What a shame, it was so beautiful. LOL.
Now I know I have to overlook all the many losses and concentrate on the positives--and there are many, but occasionally I have to rant. I feel better now. Thanks for listening.

Sunday, April 8, 2012

Saturday, April 7, 2012

Happy Easter

Sunday, April 1, 2012

First McDonalds

Saturday, March 31, 2012

Silence of Good People


The world suffers a lot. Not because of the violence of bad people, but because of the silence of good people! - Napoleon.

Wednesday, March 28, 2012


photo:K.Law

Wood Duck

Aix sponsa

Considered by many to be the most beautiful of North American waterfowl, the wood duck is a perching duck that normally nests in cavities in trees.

Appearance

  • Medium sized perching duck
  • Breeding male has an iridescent green and white crested head, red eyes, red and white bill, chestnut breast, golden flanks and iridescent back
  • Female is a drab version of the male but is considered striking compared to other duck hens

Breeding

  • Wood ducks typically pair on the wintering grounds or on the return migration to the breeding grounds
  • Arrive on breeding grounds in April
  • Nests in preformed tree cavities made by tree diseases, fire scars, lightning, and cavity-making birds like pileated woodpeckers for nest sites and also use artificial nest boxes
  • Females lay 7-15 white-tan eggs which they incubate for an average of 30 days
  • Male begins to spend less time with female once she begins incubating eggs
  • Females stay with young until they have fledged and then leave to undergo a feather moult

Habitat: Wooded wetlands, rivers, streams, lake and river edges.

Tuesday, March 27, 2012

Time not chatter


The best kind of friend is the one you could sit on a porch with, never saying a word, and walk away feeling like that was the best conversation you've had. ~Author Unknown

Sunday, March 25, 2012

Finger Monkeys


Finger Monkeys – Too Small To Be Real?

Ever held a finger monkey before? What’s a finger monkey, you ask. Well, believe it or not, it’s a monkey the size of a human finger. They got their name because of their size and the fact that they cling to your fingers when you try to hold them. The planet’s smallest living primate, finger monkeys are also known as pocket monkeys or tiny lions.

Indigenous to the rain forests of Brazil, Peru, Ecuador, and Colombia (where they possibly export drugs to other finger monkeys), the common finger monkey can grow up to 14 inches. Don’t let a finger monkey’s looks fool you. Its claws are extremely sharp, and when a provoked, these pygmy marmosets can wreak havoc like you’ve never seen.



Thursday, March 22, 2012

Happy Birthday to me

March 21st was my 66th and I'm hoping for a few more.
Thanks to everyone for parties, gifts, and wishes.
You are wonderful--but I know you know. LOL.

Tuesday, March 20, 2012

March 16, 2012

Cellucci fights ALS, raises fund for research

BOSTON (AP) — Former Republican governors Paul Cellucci and William Weld, once partners in running state government, have joined forces again — this time to raise money for research into ALS, or Lou Gehrig's disease.

Cellucci, 63, disclosed in January 2010 that he had been diagnosed with Amyotrophic lateral sclerosis. The disease attacks the brain and spine, and has no cure.

Yesterday, he appeared at a Boston fundraiser to help announce a $500,000 gift from the biopharmaceutical firm Biogen Idec to the UMass/ALS Champion Fund. Cellucci spearheaded creation of the fund, boosting researchers at the University of Massachusetts Medical Center in Worcester as they work to find a treatment for the disease.

Cellucci, who uses a wheelchair, said he still feels good overall.

"I'm weak in my arms and legs, but everything else is working fine," he said. "I'm fortunate to have a slow case. I hope it stays that way."

At his side was Weld, who hosted the fundraiser and jokingly introduced Cellucci as the "hind legs on the so-called Weld-Cellucci kangaroo ticket. The hind legs were stronger than the front legs."

Cellucci was Weld's lieutenant governor from 1991 until 1997, when he became acting governor upon Weld's resignation. Cellucci was elected governor in 1998 and served until 2000, when he resigned to become U.S. Ambassador to Canada.


Saturday, March 17, 2012


Thursday, March 15, 2012

Coming soon


I saw my Respirologist today and this is what he is recommending.

Completed tracheotomy:
1 - Vocal folds
2 - Thyroid cartilage
3 - Cricoid cartilage
4 - Tracheal rings

5 - Balloon cuff
Among the oldest described surgical procedures, tracheotomy (also referred to as pharyngotomy,laryngotomy, and tracheostomy) consists of making an incision on the anterior aspect of the neck and opening a direct airway through an incision in the trachea. The resulting stoma can serve independently as anairway or as a site for a tracheostomy tube to be inserted; this tube allows a person to breathe without the use of his or her nose or mouth. Both surgical and percutaneous techniques are widely used in current surgical practice.

Sunday, March 11, 2012

Saturday, March 10, 2012

A new image

I decided I needed a change so after pimping my power chair I went for a few nips and tucks. What do you think? Perhaps the tattoos were overkill.
The pink stilettos pinched my toes so had to go. They're somewhere along Highway #1 east of the Langley exit.

Sunday, March 4, 2012

In Memory

12 years ago on March 4th I lost my best friend to Breast Cancer.
It only seems like yesterday that we skied Whistler and shared good times with our friends.
You never know what is in your future--good or bad--so enjoy every moment you can while you have good health.
Sandra, I miss you and remember all the great days we shared. You were a mentor to many.

Monday, February 27, 2012

Have a nice day !!!!!!!!

Sunday, February 26, 2012

BiPap

I had my air intake upped to 11 from 9
and it has made a significant positive difference in my energy level.
I'll be practising the Tango soon.