Sjm16
Member
- Joined
- Sep 16, 2015
- Messages
- 17
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- CA
- State
- Nova Scotia
- City
- halifax
it seems I am somehow getting lost in my attempts to post under your established " Newly Diagnosed" topic. My apologies if this thread or post ends up on it's own, or under another topic. My aim is to join you in The Newly Diagnosed category and introduce myself. My name is Susan, under the sjm16 username.
I was diagnosed 3 weeks and a day ago with MND/ALS after 8 months of obvious decline, various guesses and a couple of mis-diagnosis episodes from extreme burn- out to mild TIAs. It is Bulbar Onset and as you all would know, that had greatly impacted my speech and voice from singing which I loved( and most folks seem to not see it as a loss once your middle age,but I felt it deeply),to speaking, articulating,to just sharing, shooting the breeze. Yesterday, my family doctor told me, after reading the EMG Report from the Neurologist who I will be seeing as the Specialist, more often,that it is " widespread". My left hand is very weak with a few curled or twisted fingers, and swallowing, chewing issues etc etc,neck and back of head pain. Over the 8- 9 months, I had to " medically retire" from my job which was in management within the mental health field overseeing and supporting a mobile team, and their clients,even when we did not know what really was wrong. It is a communication -rich field, very busy daily and with crisis, day or night, so my limited stamina and poor,slurred speech simply could not cut it.
I am a wife of a kind husband,mom of 4 adult kids and g-mom to 12. Yes, I am A Believer,have faith in God, but struggling to balance this difficult reality daily with hope. Thank you for listening/ reading. It seems the nightmare I cannot awake from,but "hope" to somehow manage. Last wk or so, in a slump with little motivation, some feat, some faith, some despair. Looking forward to the resources and expertise,common experiences of this support site.
I was diagnosed 3 weeks and a day ago with MND/ALS after 8 months of obvious decline, various guesses and a couple of mis-diagnosis episodes from extreme burn- out to mild TIAs. It is Bulbar Onset and as you all would know, that had greatly impacted my speech and voice from singing which I loved( and most folks seem to not see it as a loss once your middle age,but I felt it deeply),to speaking, articulating,to just sharing, shooting the breeze. Yesterday, my family doctor told me, after reading the EMG Report from the Neurologist who I will be seeing as the Specialist, more often,that it is " widespread". My left hand is very weak with a few curled or twisted fingers, and swallowing, chewing issues etc etc,neck and back of head pain. Over the 8- 9 months, I had to " medically retire" from my job which was in management within the mental health field overseeing and supporting a mobile team, and their clients,even when we did not know what really was wrong. It is a communication -rich field, very busy daily and with crisis, day or night, so my limited stamina and poor,slurred speech simply could not cut it.
I am a wife of a kind husband,mom of 4 adult kids and g-mom to 12. Yes, I am A Believer,have faith in God, but struggling to balance this difficult reality daily with hope. Thank you for listening/ reading. It seems the nightmare I cannot awake from,but "hope" to somehow manage. Last wk or so, in a slump with little motivation, some feat, some faith, some despair. Looking forward to the resources and expertise,common experiences of this support site.