Journal entry by Angela Shackleton —
New Year!!!
Hi All,
Time for an update on this my journey. My 1st team day went well. We met with 8 people who are members of my team. Individually of course. The day was meant to introduce us to all members of my team and creat base lines for me. I learned that my ALSFRS-R score is 31/48. This is the ALS Functional Rating Scale- Revised. Meaning how well I do every day things like turn in bed, walk and eat.
Alot of changes have happened around our house. We have a versa frame on the main toilet (hand rails), 2 grab bars in shower and an M rail on our bed. The bedroom has been switched around to make it easier for me to get in and of bed. Dino has installed all of these features. He has taken over the cooking, cleaning, laundry and doing all the stuff he did before. He has become my personal chauffeur, driving me to all my appointments. I always drove, but he has stepped up and taken over. He really is my saviour.
I am going to get a device that speaks for me. I'm excited for this. I won't have to use my phone and text to speech apps. They've neen a life saver the past few months. The only way I can communicate now. When I try to speak it is painfully slow and garbled. So I rarely try and speak anymore and rely on my trusty phone. Although, my left thumb is developing a callous.
I have an appointment on the 5th to be fitted for a brace or an AFO for my right foot and leg. It rotates on the outside of my foot when I walk. So needles to say it will be quite beneficial to me.
I was spoiled at Christmas. All the kids were here except 2. The 2 that were missing live far away so it was expected. It was a magical day.
So that's it for now. Sorry it took me so long to post an update, but we were inundated with appointments and then Christmas, it was all overwhelming to say the least.
One more thing. Many of you know about my birthday fundraiser on Facebook. If you don't know about it I am raising money for The ALS Society of Windsor-Essex. All of monies raised goes directly to The ALS Society of Windsor-Essex. This Society is helping me in my journey. They provided us with all of the equipment we are using except the grab bars for the shower. They even provided me with a porter wheelchair. It relies on funding from the community. So if you haven't already donated please consider contributing to this worthy cause. You have until January 10th 2022. My 50th ( gulp) birthday. Let's go into my 50th with a bang!!!!!
I wish you all a Happy and Healthy 2022.
Stay Safe,
Angela
Hi All,
Time for an update on this my journey. My 1st team day went well. We met with 8 people who are members of my team. Individually of course. The day was meant to introduce us to all members of my team and creat base lines for me. I learned that my ALSFRS-R score is 31/48. This is the ALS Functional Rating Scale- Revised. Meaning how well I do every day things like turn in bed, walk and eat.
Alot of changes have happened around our house. We have a versa frame on the main toilet (hand rails), 2 grab bars in shower and an M rail on our bed. The bedroom has been switched around to make it easier for me to get in and of bed. Dino has installed all of these features. He has taken over the cooking, cleaning, laundry and doing all the stuff he did before. He has become my personal chauffeur, driving me to all my appointments. I always drove, but he has stepped up and taken over. He really is my saviour.
I am going to get a device that speaks for me. I'm excited for this. I won't have to use my phone and text to speech apps. They've neen a life saver the past few months. The only way I can communicate now. When I try to speak it is painfully slow and garbled. So I rarely try and speak anymore and rely on my trusty phone. Although, my left thumb is developing a callous.
I have an appointment on the 5th to be fitted for a brace or an AFO for my right foot and leg. It rotates on the outside of my foot when I walk. So needles to say it will be quite beneficial to me.
I was spoiled at Christmas. All the kids were here except 2. The 2 that were missing live far away so it was expected. It was a magical day.
So that's it for now. Sorry it took me so long to post an update, but we were inundated with appointments and then Christmas, it was all overwhelming to say the least.
One more thing. Many of you know about my birthday fundraiser on Facebook. If you don't know about it I am raising money for The ALS Society of Windsor-Essex. All of monies raised goes directly to The ALS Society of Windsor-Essex. This Society is helping me in my journey. They provided us with all of the equipment we are using except the grab bars for the shower. They even provided me with a porter wheelchair. It relies on funding from the community. So if you haven't already donated please consider contributing to this worthy cause. You have until January 10th 2022. My 50th ( gulp) birthday. Let's go into my 50th with a bang!!!!!
I wish you all a Happy and Healthy 2022.
Stay Safe,
Angela
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