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Hi everyone! It's been a short few weeks since we last chatted but thought I would drop by with a short note, as promised!
As they say these are the "dog days" of summer! We have experienced record setting temperatures in Ontario during July. Many days hovered in the mid 30's with humidity taking it into the 40's...ughhh!
I have quickly found that while warmer temperatures keep my body moving better, minor levels of humidity are my enemy causing, similar to most, fatigue and tougher breathing. So needless to say, like a cold January day, I have been somewhat sequestered to the indoors.
I spent the early part of July in a couple of meetings with the CCAC(Community Care Access Centre). It is a group that I can honestly say I knew little about till my diagnosis, and then, my sister, the social worker, also filled me in. I stole the blurb below which somewhat defines what they do and the link to their website as well. It is not a group that I wish upon you for the future but we have definitely benefitted by engagement with them. They are a government group, yes, but to date have provided us with an Occupational and Physical Therapist, both in a timely fashion, and both, great people and professionals. They have been invaluable resources, from a learning perspective and future options available. That's your little education update for the day! We will leave the politics out of it and get back to more about me!lol
CCAC
"...Community Care Access Centres (CCACs) are committed to supporting and strengthening functional integration alongside our health system partners and, in doing so, will work closely with the Local Health Integration Networks (LHINs) in order to deliver truly patient-centred care. As Community Care Access Centres, we are committed to playing a leadership role in working in a more integrated fashion with primary care, advancing our role in cross-system patient navigation for the populations who need it the most and in improving patient outcomes and experience by driving quality based reform."
Health
This month I will say I'm fine.
Unfortunately, over the last month or so, I have noticed my legs are failing me more. A few more wobbles, a fall, tougher getting out of chairs etc It seems if my legs are at 90 degrees, or less, when sitting, I might not make it up.
I continue doing physio and my exercises to keep things moving. The frustrating part is what I call the "diminishing returns". We have all experienced the results accomplished say when we eat better, or exercise, we see the positive results and the differences. Now don't get me wrong, what I'm currently doing, it does help and I won't stop, but the frustration grows when you know the results won't be turning this damn thing around. But we will keep at it with the hope we slow it up!
I have also felt that I'm losing more independence recently...dressing, eating, moving around. It has been suggested to me that I have been a little grumpy of late! Well, I will turn that around! I'm learning that as I accept my new "limitation" and reality then I can move on to the next. August has just felt like there have been more changes than less, and with that, I've been a little slow on the acceptance part! I promise to be better going forward!
Updates
This month I will say I'm fine.
Unfortunately, over the last month or so, I have noticed my legs are failing me more. A few more wobbles, a fall, tougher getting out of chairs etc It seems if my legs are at 90 degrees, or less, when sitting, I might not make it up.
I continue doing physio and my exercises to keep things moving. The frustrating part is what I call the "diminishing returns". We have all experienced the results accomplished say when we eat better, or exercise, we see the positive results and the differences. Now don't get me wrong, what I'm currently doing, it does help and I won't stop, but the frustration grows when you know the results won't be turning this damn thing around. But we will keep at it with the hope we slow it up!
I have also felt that I'm losing more independence recently...dressing, eating, moving around. It has been suggested to me that I have been a little grumpy of late! Well, I will turn that around! I'm learning that as I accept my new "limitation" and reality then I can move on to the next. August has just felt like there have been more changes than less, and with that, I've been a little slow on the acceptance part! I promise to be better going forward!
Updates
As I mentioned earlier in July, the doctor had made the decision that it was probably time that he notified the ministry in regards to my license. To date we haven't received any notification, we check that mailbox everyday! It's going to be a tough pill to swallow for sure, a big blow to my independence that I have tried dearly to hold on to. Walker, wheelchair and scooter part of the "tools" now keeping me engaged in daily routines. On the plus side, we can go down to one vehicle for a while and I can be chaffeured around by family and friends!
I was risking it recently though, as we went around the corner to a neighbour's pool party and I took the scooter. Well, long story, short, I had a beer and climbed on that scooter, horn blowing and drove home! Crazy times!
Grandpa picked us up in Moncton and when we arrived, G&G had all comforts of home in place to deal with me! A ramp to the "bunky", power lounge chair, walker and scooter. Imagine if you will the hospitality and down home feel of PEI as my Mom and Dad were able to find all this for our short 8 day visit.
At the cottage in PEI, little cottage toilets almost had me stranded a couple of times, but I managed to "rock" and get back on my feet! Phew, I know too much info!
We had a great week and great weather. I won't lie, there was moments of stress and some angst getting around, but I made it to the beach a couple of times, where the kids are in their glory, so it was all worth it.
Ben loves the outdoors and the beach. He went deep sea fishing for the first time with Susan and brought home enough cod and mackeral for his Grandparents, Aunt's and Uncle's.
Sarah, plunk her in shallow water, with a pail, shovel, shells and hermit crabs around and she is content for hours!
Got to see lots of family, and I cherish those moments seeing those that I don't see enough.(Missed Auntie Joyce though)
G&G, as always, made the week easier and made the "moment matter". Thanks Mom and Dad!
As I've said many times before, PEI holds a special place in my heart, and hopefully, a part of my legacy, that Ben and Sarah will enjoy for many years to come.I was risking it recently though, as we went around the corner to a neighbour's pool party and I took the scooter. Well, long story, short, I had a beer and climbed on that scooter, horn blowing and drove home! Crazy times!
Renos were slow to get going so we made a last minute decision to escape the heat and make our annual pilgrimage to PEI. Grandma and Grandpa's cottage was our destination and we flew into Moncton. Susan got us all there in one piece juggling all of our special needs! She's the bomb!
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| Ben's first fish deep sea |
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| Sarah |
At the cottage in PEI, little cottage toilets almost had me stranded a couple of times, but I managed to "rock" and get back on my feet! Phew, I know too much info!
We had a great week and great weather. I won't lie, there was moments of stress and some angst getting around, but I made it to the beach a couple of times, where the kids are in their glory, so it was all worth it. Ben loves the outdoors and the beach. He went deep sea fishing for the first time with Susan and brought home enough cod and mackeral for his Grandparents, Aunt's and Uncle's.
Sarah, plunk her in shallow water, with a pail, shovel, shells and hermit crabs around and she is content for hours!
Got to see lots of family, and I cherish those moments seeing those that I don't see enough.(Missed Auntie Joyce though)
G&G, as always, made the week easier and made the "moment matter". Thanks Mom and Dad!
The good news, renos are underway! Been shopping for hardwood, tile, fixtures and at least making that part of the fun. It will be chaos inside soon but we will manage or just get the hell out of here!
I've gone on and on again, begone with ya! Enjoy the last couple weeks of summer!
From the Foo...
"It's times like these you learn to live again
It's times like these you give and give again
It's times like these you learn to love again
It's times like these time and time again"
I've gone on and on again, begone with ya! Enjoy the last couple weeks of summer!
From the Foo...
"It's times like these you learn to live again
It's times like these you give and give again
It's times like these you learn to love again
It's times like these time and time again"
Scott - your update is amazing. I'm envisioning the drunk driving on a scooter and can only imagine what a laugh that was. Thank you for sharing the storiesand pictures from PEI - I'm so very glad that you had a great time and managed so well with help from your amazing wife and family.
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