Jennanne
Active member
- Joined
- Oct 25, 2016
- Messages
- 39
- Reason
- CALS
- Diagnosis
- 12/2016
- Country
- US
- State
- New York
- City
- Buffalo
Hi Everybody,
My name is Jennifer and my 57 year old husband was just preliminarily diagnosed with Bulbar Onset ALS. We are completely in shock as his first symptoms (that he/we can recall) started in early June 2016 (maybe late May). He began with slurred speech, emotional lability and his legs felt heavy going up the stairs. We didn't think much of it, as work was very stressful for him during that time frame and ALS never entered our mind.
When I finally did talk him into going to his primary MD just after Labor Day we were certain he had a mini stroke or TIA. Currently, his speech has deteriorated some, but it is not terrible. He has no respiratory or swallowing difficulty. He now can barely walk up the stairs and his hands are beginning to weaken. Also, after going to our initial appointment with a neurologist in the beginning of October, both his feet went numb. This is a man who tore down an entire old wooden deck at the end of April, we are in absolute shock over the diagnosis. It feels like it has progressed so incredibly quick.
The Neurologist did a host of bloodwork and an MRI of the brain and spine. Nothing came back positive. We were then referred to a Neuromuscular MD who performed the EMG at the end of October and gave us the diagnosis on November 3rd. She is working to help us get a second opinion (which we requested) at the Cleveland Clinic (we are in Buffalo, NY).
I do not even know where to begin. We both work full time and have 2 school age girls (14 and 11) and my husband has older kids as well. Any advice on how to tell our younger ones is much appreciated (the older ones already know and have been incredibly supportive). Also, any advice from anyone who has been to the Cleveland Clinic? Thank you so much!!
Jennifer
My name is Jennifer and my 57 year old husband was just preliminarily diagnosed with Bulbar Onset ALS. We are completely in shock as his first symptoms (that he/we can recall) started in early June 2016 (maybe late May). He began with slurred speech, emotional lability and his legs felt heavy going up the stairs. We didn't think much of it, as work was very stressful for him during that time frame and ALS never entered our mind.
When I finally did talk him into going to his primary MD just after Labor Day we were certain he had a mini stroke or TIA. Currently, his speech has deteriorated some, but it is not terrible. He has no respiratory or swallowing difficulty. He now can barely walk up the stairs and his hands are beginning to weaken. Also, after going to our initial appointment with a neurologist in the beginning of October, both his feet went numb. This is a man who tore down an entire old wooden deck at the end of April, we are in absolute shock over the diagnosis. It feels like it has progressed so incredibly quick.
The Neurologist did a host of bloodwork and an MRI of the brain and spine. Nothing came back positive. We were then referred to a Neuromuscular MD who performed the EMG at the end of October and gave us the diagnosis on November 3rd. She is working to help us get a second opinion (which we requested) at the Cleveland Clinic (we are in Buffalo, NY).
I do not even know where to begin. We both work full time and have 2 school age girls (14 and 11) and my husband has older kids as well. Any advice on how to tell our younger ones is much appreciated (the older ones already know and have been incredibly supportive). Also, any advice from anyone who has been to the Cleveland Clinic? Thank you so much!!
Jennifer