Friday, 4 January 2013

January is Alzheimer Awareness Month! Come Join Us in Learning More and Making a Difference


2013 Alzheimer Awareness Month Event
 
Public Lecture and Exhibition

        
 When:     Monday, January 21st, 2013

                      10:00 am  -  12:30 pm  (includes light refreshments)

 

 Where:    William G. Davis Computer Research Centre

                      DC 1302 (lecture) and DC 1301 (exhibition)

                      University of Waterloo

 

This event is free and parking is available at a cost of $6 in Parking Lot M

To register call 519-888-4567, Ext. 36880 or email jluh@uwaterloo.ca.

Space is limited!
 
   
_______________________________________________________________________
Living Well with Dementia and
Challenging the Myths
Dr. Peter J. Whitehouse, MD-PhD
Professor of Neurology, Case Western Reserve University, USA
Author of “The Myth of Alzheimer’s: What You Aren’t Being Told About Today’s Most Dreaded Diagnosis”
 
 
 A Meaningful Life
Ann Marie Wilson
Family partner in care, Spokesperson and Advocate
 

Carpe Diem - Living Life to the

Fullest with Dementia
Mary Beth Wighton
Person living with Frontotemporal Dementia, Spokesperson and Advocate
______________________________________________________
 

Displays by: MAREP, RIA, Alzheimer Society of Kitchener Waterloo, and much more!!!!
 
For more information including a map and directions, visit www.marep.uwaterloo.ca/conferences

Living Beyond the Diagnosis of Younger Onset Dementia


By Kate Swaffer ©, 2012


Just before my 50th birthday, I was diagnosed with a younger onset fronto temporal dementia. With no pharmacological treatment options, and the realisation it is a terminal illness, I decided to accept it as a disease with disabilities, rather than one leading to my demise.  My neurologists and neuropsychologists told me to “give up work, give up study, and go home and live for the time I had left!” I termed this ‘prescribed disengagement’ and chose to ignore it! I gave up work 12 months later as my driving license was revoked, but rather than give up everything, I developed strategies to accommodate the disabilities caused by the symptoms of dementia, as they appeared. I remained at university with the support of disability advisors and campus counsellors to continue with two tertiary degrees, both completed post dementia diagnosis. My roles now are as an advocate for improving dementia and aged care, and a writer, poet and speaker.

I remain actively engaged in a world beyond dementia, and use writing and blogging not only as a form of emotional healing, but to create my memory bank. My blog has become the journal of my life, my thoughts and my activities, ensuring my memories are retained, not only for my children later on, but for me right now. Other social media like Facebook and twitter have also become important, as they offer other social connections and photographs, other ways to record and recollect my world. Having dementia does not mean you have to give up doing crazy and fun things or blogging and living beyond the diagnosis. For some, following a diagnosis of dementia, their whole life becomes about dementia and many forget to keep living the other parts of their lives. It is probably the negative side effect of the ‘prescribed disengagement’ given out following diagnosis.

Blogging and writing has become imperative to my positive attitude, and my global community motivates me to keep fighting against dementia. I published a poetry book earlier this year, Love, Life, Loss, A Roller Coaster of Poetry, available via my blog Creating Life with Words. Recently I have been involved in setting up two new blogs; one called The Dementia Dialogue, where a woman diagnosed with dementia and a carer discuss the disease, its impact on their lives. Through this conversation, we hope to open up the doors to a deeper understanding. The other one is called Global Dementia Voices, where people with dementia share their stories. I write to stay inspired, to share my thoughts, to remind me of who I really am. Treating the symptoms of dementia as disabilities, rather than managing them in ways that constrain and hinder me are vital to my well-being, motivation, and my ability to continue living well.

Personal Stories from People Living with Dementia - Part of January Alzheimer Awareness

Over the years, MAREP has been very fortunate to have met people who inspire the work that we do at MAREP and who challenge us to find innovative ways to help support those living with dementia in making a difference not only for themselves but for others who are living with and/or affected by dementia.

As part of January Alzheimer Awareness month, we thought we would feature on our blog some inspirational stories - personal stories submitted by our partners living with dementia throughout the course of the month.

You will find that each person's journey and experience living with dementia is very different as we are all unique individuals, yet you will also note some similarities.  We hope that by reading these stories, you will be able to gain a better understanding of what it is like living with dementia and how all of us - those living without or with dementia - can partner together to ensure that people living with dementia can lead a very fulfilling and meaningful life!

Tuesday, 18 December 2012

The Importance of Tradition: A Journal Entry



I love tradition.  I come from and am part of a family of traditions.  Growing up, holidays were always  a time of making the same yummy recipes, putting up the same Christmas tree, visiting the same people, telling the same funny stories, and putting up the same homemade Christmas stockings for Santa to fill.

Photo of Christmas tree with lights and gold and red decorations

As I grew older, I took with me many of these traditions and eventually introduced them to my own family.  One of my favourite tradition is decorating our Christmas tree.  Eight years ago, when we celebrated our first family Christmas together, we began the tradition of going to a local tree farm to buy our Christmas tree. 

Now remember, global warming had not affected the weather as much, so we had something called “snow.”  The tradition began at the house with the pulling on of big coats, boots, hats, mitts and snow pants.  You always hoped you didn't have to go to the washroom!  Our two dogs, Leo and Riley, also had a special outfit for the event.  Both dogs had their sweaters and Christmas bells put on them.  We laughed as they began their dance trying to get the bells off of their legs. 

We all piled into the van and the Christmas sing-song began.  The tree farm was fairly close so in no time we arrived to a very busy scene.  People, trees, dogs and snow.  What a wonderful, chaotic place!  We quickly filed out of the van and rushed to the opening of the farm.  This is where I would put Brianna into the sleigh we had brought and began to “mush.”  With the dogs prancing beside us, we began to inspect the many trees until finding the perfect one.  At a young age, I always encouraged Brianna to be independent.  With my assistance, she would lay down on the cold snow and begin to saw the tree trunk.  Down it would come with a collective “yeahhhh” from all of us.  We always liked to count the rings on the tree to know how old it was.  For some reason, this was important. 

The tree would then be moved onto the sled to be towed back to the point of entry so we could pay for it.  I always loved that walk back.  The cold, the snow falling softly, the sounds of the dogs bells, and the excited chatter of my family.  I felt at peace.

Once we arrived back, we would proceed into the small building to have hot apple cider.  How wonderful it tasted.  Brianna would then walk through the isles of Christmas decorations and pick out the one she would like to take home with her.  Every year, Brianna still picks out one Christmas ornament to adorn the tree.

The tree would then be strapped to the roof of the van, and we would all pile back into it and head for home.  From the roof, it would be moved into the garage for a day so it had time to fall. 

Once it is time to decorate the tree, family members take on specific roles.  Dawn, is the individual who hands out the tree ornaments to Brianna.  She also has the very important job of ensuring the tree is straight and if not, to coordinate the efforts to make it so.  For some reason, our tree always seems to have a bit of a tilt.  Brianna is the “hanger.”  It is her role to take the ornaments from Dawn and then find a special place on the tree for each and everyone.    Dawn usually helps out with instructions from the couch.  My role starts at the very beginning and goes to the end of the process.  It begins by taking out all of the boxes from storage and moving them into the family room.  Then, from the garage, I take the Christmas tree into the house and put it into the tree stand.  Next, I put a string of lights around the tree and make sure it looks even.  Then my girls join me and the decorating begins.

During the time in my life when I travelled around the world for work, I collected Christmas ornaments.  Over the years, I have accumulated some really beautiful and unique ornaments.  Our family tradition is for me to is take each of these ornaments, prior to the their positioning on the tree, and to provide the history of the ornament.  It comes with the where and when I obtained these special treasures.  Each year, bulbs from South Africa, Mexico, England, The Netherlands, Ireland, Texas and Bethlehem are dusted off and placed in their spot of honour. 

The other special bag that is brought out from its box is that containing Brianna's homemade ornaments.  We all laugh and smile as we pick up each ornament and Dawn reminisces of the stories behind the little gems.

The final, most important moment is shared with Brianna and myself.  It is the adorning of the tree with the Christmas angel.  When Brianna was little, I used to lift her up and she would place it on the top of the tree.  But, now that she is 18, I just stand beside her as she does her work.  And of course, a picture is taken of the yearly event. 

Today, the three of us enjoyed this special day of Christmas tree decorating.  Unfortunately, for the last three years we no longer venture to the tree farm but rather buy a pre-cut tree from a lot. 

Today's event was a bit different as we added a new element to it.  For the first time, we video taped it.  Without saying it, we sensed the importance of capturing this beautiful moment this year.  We are keenly aware that we do not know what Frontotemporal Dementia (FTD) will bring over the next year.  In fact this year, a few variations had to take place to work around FTD.  Brianna took over my role of ensuring that the tree was straight and properly secured.  My sense of frustration was high and I found it hard to tighten the tree holder bolts.  Also, there were fewer decorations on the tree this year.  It is so easy to be over stimulated that less is always better - even on the Christmas tree.

I must say a bit of a sense of relief has come to me.  No matter what life brings to me, I know  my stories of the Christmas ornaments will be passed down through generations.    The important tradition of the tree decorating will continue - no matter what. 

Friday, 14 December 2012

12 Days of Health and Wellbeing

Banner image: 12 Days of Health and Wellbeing from the faculty of Applied Health Sciences

As the holiday season approaches, the University of Waterloo’s Faculty of Applied Health Sciences understands that a busy lifestyle and the added demands of the season can put stress on our mind and bodies. Our gifts to you: a reminder to take some time to take care of yourself, and some friendly tips on how to protect and nurture the ultimate gift: your health. 

Watch the videos: 12 Days of Health and Wellbeing

In the Day #4 video, the Director of MAREP, Dr. Sherry Dupuis, suggests ways that you can help make the holiday season more enjoyable and comfortable for older adults in your family.

Watch the video: Supporting Older Adults During the Holiday Season

Happy Holidays!


Related Posts Plugin for WordPress, Blogger...