Showing posts from March, 2018

Truthful Tuesday: Regression and getting a foot hold again

I was really starting to feel like my old self.   My husband and I were communicating, work was going well, I didn't feel burdened by outside pressures and things looked like they were coming into focus.  I was able to start looking at my future and I was feeling confident, secure in the way it was heading. 

Was I where I wanted to be? Was the journey over? No, but that oppressive, I'm never going to get there feeling had shrunk into a quiet whisper in my head that I could watch say what it was saying and I was feeling detached, like it wasn't me, but some weird movie my head wanted to play and thought I should buy into.

Then if you've been reading my other blogs, the Chapter blogs, you will have seen that we've been dealing with my youngest sons walking issues and haven't really known what has been causing it but we were chasing down all possibilities.

When I was given his diagnosis, of CMT I thought my heart was going to break.  Guilty thoughts washed over me…

Chapter 5: How our life is changing

Man do things ever change and flip you on your head when you receive news you weren't expecting! I know stating the obvious, but even though we logically know it will happen it's still super frustrating and shocking when it happens.

So three statements the doctor made when we were there that started us on a path, Disability Tax Credit, FSCD funding, and AFOs. I am so, happy (?!?) that I have had the jobs I have had because none of these terms or acronyms were foreign to me.

Disability Tax Credit and Benefit are two things we will apply for, it's likely we make too much money to see any return in the benefit section but we will be able to use all our costs as tax write offs now.  Which is a small thing, but we are now going to be incurring more costs, with more medical trips, more medical supplies and such so anything to help us counter that will be hugely beneficial. I have the forms I need and I just need my doctor to fill them out so I can submit them to the government.

Chapter 4: What is CMT

So CMT is the diagnosis Teddy got, but what in the actual does that mean? 

Well from what I have gathered and learned CMT is a hereditary condition that affects the peripheral nervous system, mainly in the feet and lower legs and hands and upper arms, but there are many different variations, and different ways CMT may become present in your genetic code. CMT is the most common of the neuropathy disorders affecting 1 in 2500 people.  So let's go through some of the ways it can be passed down and some of the different variants.

CMT can be and is usually passed from parent to child.  This can mean that one parent may pass on the mutated gene to their child, this is in a autosomal dominant.  Another way is both parents have an abnormal gene which causes the mutation of the gene in the child, thus in a recessive fashion.  You can also get CMT inherited in a X linked way, so the gene is located on the X Chromosome.  You can also have no apparent history of CMT in your family and the ge…

Chapter Three: Visiting the Neurologist

Teddy has what the Physical Therapists called drop foot. When you google drop foot the three main causes are cerebral palsy, muscular dystrophy and diabetes. I was certain that cerebral palsy was not his condition, I was pretty certain diabetes wasn't either, but not 100% certain and most muscular dystrophies, the most common ones anyway, don't present until age 4 and Teddy had been like this since he was walking at 18 months. But it was still terrifying.

We received a letter from the Glenrose Rehabilitation hospital in Edmonton just after Valentine's day, they stated it would be approximately 4 month waiting period before Teddy would be seen by the neurologist there.  My only concern was 4 months away was June or July and I wanted to make sure he was seen before the doctors took their summer holidays. 

My phone rang with an Edmonton Number on February 21st.  It was the Glenrose and they wanted to book Teddy's appointment, they had February 28 or March 13th available. …

Truthful Tuesday: Finding Supports

It is so important that people find the right supports for them. I will often use my natural support system but I have troubles telling some people my troubles and I really struggled with telling a lot of people in my natural support circle about my troubles.

This happened for two reasons, I couldn't or wouldn't identify what I felt was the problem.  My marriage being in a terrible place was devastating, so many things about my marriage seeming to fall apart and me being in a constant state of unhappiness was eating away at me, I didn't want to face it and it seemed shameful that I had let my relationship get this far.

That feeling of shame is terrible to have to go through, I wasn't the only guilty party in this, and try as I might I couldn't get my husband to engage with me in a productive manner.  Could I get him to get upset and angry, sure I am good at provoking him, but this is not effective. 

I think the other part is, you see people on Social Media and they…

Chapter 2: Physical Therapy

While we were in Nova Scotia, we told people we had to leave by a certain day because of this upcoming appointment, which was true, we did need to make it back.  There was a doctor there and he kept telling me nothing was wrong he seemed fine with his walking, but I felt he'd say whatever he needed to have us stay another day or two.

The trip to Nova Scotia was wonderful, my boys were great and they played and frolicked and made so many memories! But then we came home and it was back to reality.

While waiting to see Dr B, Leigham and Teddy brought me all the children's books in the waiting area to read.  Some of those books are super old and you can tell from their content that they were written in the seventies. I almost felt scandalized reading one book. I wish I could remember it better to put the title in this blog. Finally, they led us back to the patient room.

"Ah, how is everyone today," Dr. B greeted as he came in.

"I'm bored," moaned Leigham ha…

Chapter 1: Why are his feet curling like that?

I loaded the boys into my white Dodge Caravan, buckling Teddy into his seat and telling Leigham to buckle up in his booster seat.  It's a fight most days, because Leigham goes in the door that Teddy's seat is beside and Teddy gets upset but today they know they are going to see the Chiropractor, so today they are happy to comply.  Usually, the chiropractor is just a mommy thing so for them it's a treat.

Driving through Red Deer is quick, the Chiropractor is downtown by the Safeway and takes about ten minutes.  Traffic is light this July morning since it's one, summer and two, after  nine.  We arrive at the Chiropractor and I take the boys in, holding Teddy's little hand tightly and we walk and he stumbles over the air.

"Come on Teddy, get up," I chide as he stumbles again, his walking has always been this way, it's like he doesn't know how to lift his toes over the cracks.  One day I fear I am going to wrench his arm out of his socket when he fal…