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Eacz60

Member
Joined
Oct 17, 2013
Messages
11
Reason
PALS
Diagnosis
02/2013
Country
CA
State
Ontario
City
Campbellville
Hello, I have been reading posts for a few months without officially registering. Well today I decided to register and introduce myself and actively participate. :smile:

I was officially diagnosed with ALS this past February at Sunnybrook in Toronto. I've spotted some fellow Canadians while browsing through posts. Any Ontario folks also at Sunnybrook?

Like many of you, the diagnosis came after many blood tests, multiple MRIs, lumbar puncture, Nerve conduction test and EMG and many tears and anxiety. I first starting seeing a neurologist in March 2012. First symptoms, tripping, stubbing toes, lagging leg began in July 2011. Thought I was just clumsy but by November 2011 I was falling, limping and couldn't get up from a crouching position.

Just to add insult to injury my annual mammogram was suspicious. I had breast cancer in 2002 followed by a mastectomy and chemo. The suspicious lesions were in my good breast. Anyway long story short, I ended up with another mastectomy in April 2012 followed by reconstruction in May. No cancer! I elected for the mastectomy because of my history and surgery was required anyway to remove 3 pre-cancerous lesions. Figured it was the best decision for me. My mother died of breast cancer at the age of 44. I was first diagnosed at 41 and my younger sister was also diagnosed at 41. She also underwent a double mastectomy in January of 2012. As you can imagine, my issues with my weak leg and limping took a backseat until my surgeries were complete.

From June 2012 until now, I've progressed from a cane to a walker and use a wheelchair outside the house . Took a bad fall last October and broke my wrist. Just got AFOs yesterday. All limbs are now effected and fingers are curling. No bulbar symptoms to date.

I struggle with facing my mortality and the impact this is having on my family. I am losing all independence and need help with eating, hygiene, toileting, getting up etc etc. I am overcome with anxiety and having my husband and children watch me deteriorate. I am using an iPad mini (a Mother's Day gift from my kids) and 1 finger to type this and to surf the internet. Laptops are too heavy and can't control mousepad. Just another reminder of how my mobility and motor skills have declined.

Sorry for the novel-length intro. Somehow makes me feel better to document my journey. Hoping to make new friends and help others along the way. Thank you for 'listening' and the support to date as I have silently been reading for months.

Evelyn
 
Hello Evelyn

What a lovely name. Sorry to say welcome to the club no one wants to join. My mom had breast cancer and is a 10 year survivor. My dad has cancer, unfortunately it was not caught in time. He is doing chemo though, never give up hope. Congrats on being cancer free. I am sure others will chime in and welcome you.
 
Sorry you have to be here but welcome Evelyn. I am a relatively new member from Ottawa but the folks here have been extremely helpful - lots of support and great tips/advice.:-D
 
A warm welcome to you Evelyn, so sorry you have to be here, but it's the best place to be, lots of support from a great bunch of people
 
Evelyn,
Welcome aboard. Best place you can be, if you have to be in a place like this. We are the tallest midget!
 
Hi Evelyn,

Welcome! Glad you took the plunge into the forum pool. You'll find lots of good information here. And the people are super nice too. Might I suggest a few things that gave helped me? For the finger curling, I wear a resting splint (picture below) at night and it's helped me greatly. For the toileting, you may want to think about a bidet seat. It's the best thing for privacy & independence. If you want details let me know, but great videos of the various models can be found on line. Using a stylus with the iPad is efficient and you can easily attach it to your hand with a Velcro strap if necessary. Works for me! The AfO's will be great for you. (but do wear them ALL the time - I learned this the hard way).
 

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So sorry Evelyn for your diagnosis. You have come to a good place. If you ever have any questions, someone on here will jump to help you! You have come through so much, I pray your progression with ALS will be slow and allow you much deserved time with your family.
Blessings,
Nancy
 
Elaine, Where did you find that wonderful padded resting splint? The only kinds I can find for my husband are foam-lined and they make his hands itch. Thanks--Diane
 
Elaine, Where did you find that wonderful padded resting splint? The only kinds I can find for my husband are foam-lined and they make his hands itch. Thanks--Diane

Diane,

I sent you a pm
 
Welcome Evelyn but sorry you have to be here. I have found this forum to be a godsend! Lots of support and information from the PALS & CALS , I don'yt post very often as only typing with one finger also but read plenty, you will find lots of answers to questions you might have, take care, Anne
 
Welcome. The people here are friendly and helpful. You are in my prayers

TF
 
Hi Evelyn...sorry you found yourself here, but welcome:)
Pete
 
Hi, Elaine I would also like to know where to get this type of splin
 
Hello Evelyn, from another Canadian. You started showing symptoms around the same time as Tim, but he was diagnosed July/12. He is now full time in a motorized wheelchair, but has no difficulty eating or speaking. We were told he had slow progressing ALS, but that does not seem the case.
As Elaine said a bidet is a great asset. Tim hated giving up his independence, but we use a ceiling lift to move him from his chair to the toilet, he does his thing, and then uses the remote to turn the bidet on and cleans himself. He calls the home phone with his cell, to let me know that he is done.

Have you called your local ALS chapter about equipment? They have been amazing to us.
 
Yes, I am in contact with a local Als chapter. I have received equipment from them. The bidet however is not something they have/loan due to sanitary concerns. I am currently looking to them for a lift chair. Hope they have one as it is increasingly more uncomfortable sitting on the couch for hours.
 
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