Aiden and Brian's Annual trip to the Stan Cassidy Center for Rehabilitation

The boys made their annual trip to the Stan Cassidy Center for Rehabilitation, in Frederiction this week. For anyone not familiar with this Center  here is a link to their site. SCCR

They have an expert team of specialists in many disciplines including Physiotherapy, Occupational Therapy, Speech Therapy, Respiratory Therapy, Recreational Therapy, Dietian, Social Work, the Fundy Chaper of Muscular Dystrophy Director, all coordinated by a Paediatric Medical Director who has become very familiar with the family over the years they have been seeing them. 

We are very fortunate to have these services available for us, here in Canada, at no cost to the boys and their family.

Several areas of concern and needs were addressed by the parents and team. Then, plans were formulated to work towards achieving these goals. It was a very busy, information packed, but productive day for the boys, their Mom, Dad and me (Grammie).

The boys took a few minutes break in the center's gymnasium, which is fully equipped for assessment  and play for all various levels of ability.

Aiden showing off his ball throwing skills.

Aiden playing with a downward spiralling car track, as Brian watches on.

Brian showing off his free weight skills.

       

Aiden, not to be outdone, showing off his skills, with the free weights

                                             

                                     

After getting bored with all the "technical talk', Aiden borrowed Grammie's camera to do a little photographing on his own.

 Aiden's capture  of his Dad and brother,as one of the staff is speaking with the rest of the family.

Big brother, Brian, Mom and Grammie, captured by Aiden.



For more information on Myotonic Dystrophy, please select the this link  Myotonic Muscular Dystrophy

Aiden helping out!

Even though a child is disabled, they can still help out to their ability. This is Aiden helping to clean the tops of his Grampy David's tube feeding cans. He called it "making bubbles".

Aiden helping out.

Stan Cassidy Center for Rehabilitation

I went with the boys and their Mom and Dad to the Stan Cassidy Center for Rehabilitation.  These were two extra days, added on to their annual yearly assessment, that the staff felt they needed to formulate working goals for the boys. 

It's always a busy time for the boys and their parents with a lot of information to squeeze in to a short period of time. As a grandmother, I was glad I was there, to stay with the boys, so Mom and Dad could speak in private to the specialists at the center.

Some concrete goals were set for Aiden and some great suggestions were put forth for Brian. Now, to  initiate these goals and work to complete them. I'm so glad they have the Summer vacation coming up soon, to work toward those goals.
We stayed at the mini apartments provided by the center for just these circumstances. Very nice accommodations and lots of extras.

Here are a few photos of our trip.

The boys posing at the doorway of their bedroom, of the mini apartment, at the center where we stayed.

Our large picture window, looking out on the outdoor rehabilitation garden.

Another angle of the 'apartment'.

All of us together.

With the boys heading out for a walk, around a very large, Fredericton block.

Aiden & Brian

Posing beside an antique snow plowing machine, (probably pulled by horses).

By one of the beautiful birch trees we passed by on our walk.

For more information on Myotonic Dystrophy, please 
follow this:link

Disclaimer

The material provided on this site is designed for information and educational purposes only. The materials are not intended to be a self diagnostic and/or self treatment tool. I encourage you to use this information as a tool for discussing your condition with your health practitioner.

Continued Assessments for Stan Cassidy Rehabilitation Center

Myotonic Dystrophy - Our Family's Journey

Together We're Stronger

The one day the boys were seen at the Stan Cassidy Center, in March was not enough time to complete the assessments the team needed to help the boys go forward with this condition to achieve a positive outcome.

So, over the next few weeks, in preparation for a couple of intense days at the Stan Cassidy Rehabilitation Center, the boys will be seen by a number of medical professionals in preparation for this visit.

So this will mean time missed from school along with coording these appointments so  they're is no over lap in times and they all get completed, in time, for the team to be able to view  the results before the visit next month.
We look forward to several busy weeks.

For more information on Myotonic Dystrophy please follow this link:

Disclaimer

The material provided on this site is designed for information and educational purposes only. The materials are not intended to be a self diagnostic and/or self treatment tool. I encourage you to use this information as a tool for discussing your condition with your health practitioner.

The boys yearly medical team visit - March 13, 2013

Together We're Stronger

Our family has been living with Myotonic Dystrophy since our diagnosis in early 2004. The following is the most recent update.

Each year the boys, along with their parents, travel to a city about an hour and a half drive away, to be seen and assessed by a whole team of medical professionals.  Each professional has their own field of expertise. They spend time with each of the boys as well as have discussions with the parents. Then, at the end of a very busy day, they co-ordinate all their observations, with the parents and a team leader, for a final wrap up session.

Aiden, waiting for one of the therapists to come to see him.

It is a very psychologically exhausting day for the whole family, with each boy seeing so many individual professionals.

Aiden playing in the waiting room while his Mom, Dad and older brother are at the wrap up session.

But, they are very fortunate that such a team exists and that they have access to this team. These yearly assessments are designed to co-ordinate a plan of care,  for each of the boys and to help the parents cope with their ongoing care, for the next year.

Both boys posing for a picture before heading out for the long drive, back home again.

For more information on  Myotonic  Dystrophy please  click  here.

Disclaimer

The material provided on this site is designed for information and educational purposes only. The materials are not intended to be a self diagnostic and/or self treatment tool. I encourage you to use this information as a tool for discussing your condition with your health practitioner.

Update - February 22, 2103

Together We Are Stronger

Our family has been living with Myotonic Dystrophy since our diagnosis in early 2004. the following is the most recent update.

Brian is now home from the hospital, eating well, back to school and gaining his strength back. We are very happy about that. He was well taken care of at the hospital by the staff and his Mom & Dad, who stayed with him in shifts during his entire time there.
The rest of our families took turns taking care of Aiden at home, so they could be there.

Aiden had an appointment with the specialist for his scoliosis. For this we had to travel to another city hospital. 

They feel  the degree of his curvature has not progressed any further from the last X-Ray a year ago. So, there was not talk of surgery at this point, which is wonderful news, for now. They talked about the possibility of a brace.The doctor felt that it may or may not help Aiden, due to the location of his curvature being so low on his spine.  It was decided for forego  the brace for now, as well. So it will be just a case of watching him carefully and revisiting the situation next year.

He did very well at his visit and  didn't complain about the procedure at all. He was rather proud to see himself in the X-Ray slides.

If you'd like more information on Myotonic Dystrophy, please click the link.

Disclaimer

The material provided on this site is designed for information and educational purposes only. The materials are not intended to be a self diagnostic and/or self treatment tool. I encourage you to use this information as a tool for discussing your condition with your health practitioner.

Everyday life with Myotonic Dystrophy - Jan 20, 2013

Together we are Stronger

Starting at the Top

David, the grandfather of the boys has been down with a common cold. You or I would shake it in a few days, but for him it takes longer. For one, he's unable to give a good cough due to decreased muscle tone. Then, even with cold medications, one has to be careful that the medications are not too strong. They seem to effect people with Myotonic Dystrophy harder. So striking a balance between keeping him comfortable and the symptoms at bay without causing harm can be difficult.

So in Winter the things he'd usually be doing, like snowblowing our driveway after a storm, just don't happen. Thank the Lord I'm healthy enough to be able to shovel, some. But in those times, we need to rely on a neighbour to plow us out.

It also means that I don't venture out much, because I don't like to leave him when he's not well. But this too shall pass and our grandparenting lives will be back on track soon.


Christin, the Mom of the boys, had her work cut out for her over the Christmas break, because neither of the boys likes to go out in the snow and cold, more specifically it's the wind that upsets them and seems to take their breath away. So, for the most part, she was housebound along with them. There were times she managed to get out when her husband could stay with them.

Now the boys are both back in school and Christin can get out more, but only between the hours the boys leave in the morning for school and the first one returns home around 2:00PM. She's happy to be able to get out when ever she can and always very grateful for some adult company, besides her husband, of course.

Brian, the eldest of the boys is 16 and in High School, in a modified program. He's finding it a little easier, this his second year in the same grade, but being a teenager, he typically doesn't like to study. This, combined with the fatigue and cognitive delays, it's still a rough go for him and his parents. His Dad is super in helping him with his studies, so that has been a blessing for them.

Aiden, the youngest boy is loving school as long as things don't change. He fixates on things, until a new  interest comes along. Since Christmas it's been a new digital camera. Rather than discourage him from this, his parents let him indulge in one of the few things he 'can' control. It's as simple as keeping the rechargable batteries charged and downloading the photos he takes when the batteries run out, which is usually every day. His Dad does a quick 'look through' the downloaded photos and usually deletes most of the pictures, keeping very few from each group.
As long as the photography doesn't interfere with his regular routine; meals baths, after school work, etc, Aiden's allowed to continue.

That pretty much covers how our family is dealing with Myotonic Dystrophy to date. Please feel free to comment or to tell us your own story.

If you'd like to ready more about this condition, please go to Myotonic Dystrophy.  

Disclaimer

The material provided on this site is designed for information and educational purposes only. The materials are not intended to be a self diagnostic and/or self treatment tool. I encourage you to use this information as a tool for discussing your condition with your health practitioner.

Global Giveaway Hop

Welcome to the Global Giveaway Hop!   
This is a giveaway hop in which you can win some fantastic prizes. It's hosted by Simply Stacey. 

 After you are done entering my giveaway you'll want to check out everyone else's.

Don't forget to follow our host -

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My prize, is a duo of these beautiful Seagull Pewter Christmas ornaments, specially crafted, each year, to support Muscular Dystrophy Canada.
Congratulations to Michael Dale Grim on winning these two beautifully crafted keepsake ornaments!!

BUY IT -

To find out more about Muscular Dystrophy or purchase one or more of  these beautiful hand crafted Seagull Pewter ornaments, please visit here at  Muscular Dystrophy Canada

WIN IT - 
Using the Rafflecopter form below, simply follow the instructions, complete the mandatory entry,  plus any or all of the optional entries for your chance to win this amazing prize!  Good luck!

(If you are new to Rafflecopter, click here for a 45 sec. tutorial on how to enter.)

a Rafflecopter giveaway

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Beginning with Knowledge - Part 7

Together We're Stronger

Our family has been affected by Myotonic Dystrophy, for many years. I've been wanting to blog about it for some time now, but didn't know how to begin. 

There is way too much information to cover in one post. So, to make it easier for me...and easier for everyone reading to understand, I have decided to break it up into a series of weekly posts.

As we travel this journey of learning together, I would like to think of this blog as a place where, if any others are affected, they too can offer comments and voice their concerns and suggestions on families dealing with this condition.

All comments and thoughts are my own. Resource information will be linked to it's source.

Our Story - continued:

Finally we had a name for the problems the two smaller boys, Christin, and her father had been experiencing. It was called Myotonic Dystrophy. We were told this was one of a  vast number of neuromuscular disorders, under the larger name Muscular Dystrophy.

It was such a scary thought, that this disorder, would be associated with our family. Before we did the research, horrible thoughts ran through our minds. Searches on the World Wide Web, turned up even more, shocking stories. 

It was at this point that help began to come to our daughter and her family. And with the direction of professionals, we were able to sort out the important facts. 

What about research?

Researchers are trying to determine how the expansion of the repeated section of DNA in genes on chromosome 19 or chromosome 3 destabilizes muscle cell function. Other scientists are studying the actual process of muscle degeneration in myotonic dystrophy and also, the effect of myotonic dystrophy on other parts of the body.

For more information on this subject, please refer to: Muscular Dystrophy Canada

Disclaimer

The material provided on this site is designed for information and educational purposes only. The materials are not intended to be a self diagnostic and/or self treatment tool. I encourage you to use this information as a tool for discussing your condition with your health practitioner.

Beginning with Knowledge - Part 6

Together We're Stronger

Our family has been affected by Myotonic Dystrophy, for many years. I've been wanting to blog about it for some time now, but didn't know how to begin. 

There is way too much information to cover in one post. So, to make it easier for me...and easier for everyone reading to understand, I have decided to break it up into a series of weekly posts.

As we travel this journey of learning together, I would like to think of this blog as a place where, if any others are affected, they too can offer comments and voice their concerns and suggestions on families dealing with this condition.

All comments and thoughts are my own. Resource information will be linked to it's source.

Our Story continued:

Before Aiden was born, we had many unanswered, family health, questions. Why was Brian not meeting the 'normal' milestones of holding his head up, sitting up, standing, walking and talking?

Christin, Brian's Mom, had trouble opening jars and had stiffness in her hands. She thought she had arthritis, at the young age of 24. 

David, her father had cataracts at 39, a heart attack at 48, premature balding, difficulties swallowing some foods, gastroenteric problems and severe apnea. 

Each one of these things, of course, were investigated and treated by the proper 'specialist' in each area.  But not until Aiden was born did it all begin to come together and begin to make sense to us.

 What are the symptoms of Myotonic Dystrophy?

Cataracts may develop frequently in people with myotonic dystrophy. They develop fairly slowly, but can occur in people as young as 30 years.

Myotonic dystrophy may affect the heart muscle. A person my experience palpitations (rapid, bounding pulse) or dizzy spells, or thy may have no symptoms whatsoever.

A person who has myotonic dystrophy may have difficulty swallowing. This is due to involvement of smooth (or involuntary) muscle. Cold foods may cause some individuals to choke.

Other potential problems may include bowel problems (constipation and stomach pain) and uterine problems in females. Affected individuals may be susceptible to respiratory problems such as infections and shortness of breath.

Premature balding may occur in some males, while females my experience thinning of hair. In addition to the symptoms of the adult form, symptoms of the congenital form of myotonic dystrophy include: difficulty breathing, sucking and/or feeding, weakness in virtually all muscles and slowness and difficulty in developing language and, motor skills.

This information comes from: Muscular Dystrophy Canada 

  

Disclaimer

The material provided on this site is designed for information and educational purposes only. The materials are not intended to be a self diagnostic and/or self treatment tool. I encourage you to use this information as a tool for discussing your condition with your health practitioner.

 

Beginning with Knowledge - Part 5

Together We're Stronger Our family has been affected by Myotonic Dystrophy, for many years. I've been wanting to blog about it for some time now, but didn't know how to begin.  There is way too much information to cover in one post. So, to make it easier for me...and easier for everyone reading to understand, I have decided to break it up into a series of weekly posts. As we travel this journey of learning together, I would like to think of this blog as a place where, if any others are affected, they too can offer comments and voice their concerns and suggestions on families dealing with this condition. All comments and thoughts are my own. Resource information will be linked to it's source. Our story-continued: After receiving a diagnosis of not one, but four, family members who had this condition, we knew we'd have a long journey ahead of us. The geneticist suggested DNA testing of my husband's siblings, as well as the children of his father's siblings. So far only one brother has been known to be affected and not to the extent of any in our family. For that we're thankful! DNA testing along with a family history and physical examination was all that was needed to make a diagnosis in our case. But without Aiden's birth in 2004, none of this would have come about. It was because of him that this condition was diagnosed in our family and our journey began. How is myotonic dystrophy diagnosed? A physician makes a diagnosis based on family history and a physical examination. Tests that will assist the physician in making his diagnosis include DNA analysis, an electromyelogram (to measure electrical activity in the muscle), a muscle biobsy (to study muscle cells for signs of the disease) and in the case of possible cataracts, and eye examination. Is there any cure or treatment for myotonic dystrophy? There is no cure for myotonic dystrophy at the present time. Treatment is symptomatic. That is, problems associated with myotonic dystrophy are treated individually. For example, surgery is available for the correction of cataracts. Medication may be prescribed to counter the effects of myotonia. A heart specialist, depending on what symptoms are experienced, will treat heart problems. Speech therapy and a modified school environment can assist children with developmental delays. Remaining as active as possible is recommended for everyone with myotonic dystrophy. For more information on this condition, please go to: Myotonic Dystrophy Disclaimer The material provided on this site is designed for information and educational purposes only. The materials are not intended to be a self diagnostic and/or self treatment tool. I encourage you to use this information as a tool for discussing your condition with your health practitioner.

Beginning with Knowledge - Part 4

Together We're Stronger

Our family has been affected by Myotonic Dystrophy, for many years. I've been wanting to blog about it for some time now, but didn't know how to begin. 

There is way too much information to cover in one post. So, to make it easier for me...and easier for everyone reading to understand, I have decided to break it up into a series of weekly posts.

As we travel this journey of learning together, I would like to think of this blog as a place where, if any others are affected, they too can offer comments and voice their concerns and suggestions on families dealing with this condition.

All comments and thoughts are my own. Resource information will be linked to it's source.

Our story-continued:
A genetic specialists was called from Nova Scotia's Isaac Walton Killam (IWK), Hospital, to come up and access the new baby, Aiden.  After studying his birth records, talking with the nurses, examining Aiden himself, he determined that genetic testing should be done on Aiden, his brother Brian, their Mother Christin and on her father David.

Aiden and Brian were found to have Congenital Myotonic Muscular Dystrophy and Christin and her father, David, had adult onset of this condition. 


Even though this was a tough diagnosis for the family, it explained a lot of individual health problems that had occurred  over the years and linked a lot of them back to this Myotonic Dystrophy.


To learn more about this disorder, please go to:
Muscular Dystrophy Canada

 What causes myotonic dystrophy?

Myotonic dystrophy is caused by an error in genes located on chromosome 19 or chromosome 3. The basic default in DM1 is an inherited mutation in the myotonic dystrophy protein kinase gene. At the present time, it is not known how the genetic abnormality causes the disorder.

How is myotonic dystrophy inherited?

Myotonic dystrophy is transmitted vie autosomal dominant pattern of inheritance. Autosomal refers to the fact that the faculty gene appears on one of the 22 chromosomes no associated with determining the sex of the child (in this case, chromosome 19). Dominant refers to the fact that th disorder is passed down by one parent of either sex who also has the disorder. There is no carrier status. Each child born to an affected parent has a 50% chance of inheriting the disorder.

Disclaimer

The material provided on this site is designed for information and educational purposes only. The materials are not intended to be a self diagnostic and/or self treatment tool. I encourage you to use this information as a tool for discussing your condition with your health practitioner.