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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.
 
Susan, welcome to the club no one wants to be a member of. We're here to help. My ALS was distal onset seven years ago. My hands a pretty useless, I made a power chair, but I can still speak, breathe, and swallow. Each one of ours is different. We have a fair number of wonderful Canadian members on this forum. I'm sure they will help you as much as they can. I did go to a counselor immediately after diagnosis. It helped me see what I was afraid of and which of those I could fix. I have no brothers, sisters, or children. I have a wonderful aide that is with me when my husband is at work. You will have bad days and good days. I wish you more good than bad.
Hollister
 
Hi Susan, welcome. Thanks for posting your details, that's very informative for everybody. I'm sure you'll get a lot of advice and support from our very compassionate and knowledgeable community here.

My name is Mike. My wife died 4 years ago and I cared for her 24/7. I'm really glad you have your husband with you.

Don't be shy. Write a lot. We even have a subforum for religious support if you want to share your faith.
 
Dear Susan,

I wanted to let you know that I am thinking of you, and am sorry to hear of your diagnosis. We share a certain number of the same experiences, you and I. I was officially diagnosed in August as well, three weeks and six days ago. I have Bulbar Onset as well. I understand so well the very real pain of not being able to speak clearly, not only as far as day to day experiences go, but most especially in regard to close friends, and my dearest loved ones.

I want to tell you that there are such warm and caring people here. I am very grateful that I am here in their midst. I believe that you will find such generous spirit here, as I have.

I hope to be in touch with you again. So much of what you said throughout your letter resonated with me.
My user name is fionae. My name is Laura.

Sincere wishes to you.
 
Thank you, all three, very much. It encourages me even this early as although I know I am not alone, it still can feel very alone until this type of connection is made. I read each of your brief summaries of your story with ALS and my heart also goes out to you each.

We will be in touch as I do not know today where to go from here, but will soon...

Susan
 
Dear Susan,
Welcome to this forum from a fellow Canadian. My heart goes out to you with all you're going through right now. Yes, it does seem like a terrifying nightmare. I too am a believer. My faith has certainly grown stronger through this. I hope God will give you grace as you walk through each day. I find it helpful to live by the words of Jesus to take one day at a time and not think too much about the future, "for tomorrow has enough troubles of its own." These times around diagnosis are particularly challenging and difficult. It's a time of grief, of loss. Take time to cry, to feel and express all the emotions. In time you will move through this to more stable ground. At least this has been my experience, and the experience of most, if not all, of us. As has been said here many times, there is life after diagnosis. There are experiences to be lived, memories to be created, love to be shared and time to enjoy the gifts of God each day. Susan, you are in my prayers."
- Charlene
 
So, so sorry. I understand your pain. My boyfriend of ten years was officially diagnosed last Tuesday.

"Sweet dreams and flying machines in pieces on the ground."

The folks on this forum know how you feel. You will find friendship and understanding here.

Andrea
 
Hi Susan,

Sorry to welcome you here but it is a good place with lots of good caring folk. You will find all sorts of support, advice and love, please do not hesitate to take advantage of all of it.

Take care,
Brad
 
Hi Susan. I'm sorry you're here, but a heartfelt welcome to you. My mom is two years into her bulbar onset als and I am her primary caregiver as she has been unmarried since I was a teenager. Sounds like you have the makings of a small army backing you! :) As everyone else has said you will find so much support and practical information here. You may even want to encourage your husband and adult children to explore this forum as they can benefit from it as well.
 
Sorry to welcome you here too Susan.

My husband was bulbar onset and I can totally identify that the loss of voice is devastating. He ran cafes so his life revolved around communication and food ...
 
BTW Susan be sure and try nuedexta or cough syrup containing dextromorphran (?) as it can help with speech and swallowing.
 
Sorry to welcome you here Susan, but welcome. There a ton of good people on this forum. You'll lots of extra support here x.
 
Dear Susan, so sorry to welcome you. Sounds like you have a good attitude and support and will find understanding here. My hubby had bulbar as well- and I so wish he had decided to get the peg tube earlier. It would have made his life so much easier. Please consider it before you lose weight and have choking episodes. Hugs. Donna
 
I am so sorry to be welcoming you here. I read all the changes and things you have lost and understand your struggle with hope. Even though it is my husband who has ALS, I find myself trying to wake up from this nightmare everyday. It is all so shocking that we make it through in the beginning just trying to believe we are going to wake up and it's not going to be real. I get that and know it is just our minds trying to cope. You have a large and wonderful family so live each day and try not to count each day. I will keep you in my thoughts and prayers and want you to know that there are so many wonderful people on here that can give you advice and hope when you need it the most.
 
Hi Susan,

Sorry to be welcoming you here. I am a newbie as well, diagnosed in June with PBP. We share similar experiences. I can totally relate to the difficulties of loss of speech, chewing and swallowing. I was the director of several medical facilities but had to take "early retirement" since it required a lot of talking.

You will find a lot of support, resources and new friends here.


Annmarie
 
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