DgtofTNfan
Senior member
- Joined
- Feb 14, 2009
- Messages
- 566
- Reason
- Learn about ALS
- Country
- US
- State
- KY
- City
- Louisville
My Dad was diagnosed last Tues with bulbar onset ALS.
In Feb 2008 he started coughing. At first his symptoms were treated as if he had a cold, then laryngitis, then there was a question of his significant history of reflux aggravating his larynx and throat and he was put on voice rest. VFSS revealed silent aspiration and he was placed on a modified diet and ST without really knowing why. Finally after MRIs, CTs, EGDs, etc. the docs told him he likely is having weakness from a stroke he had years ago that he had previously been able to compensate for that now he was losing the ability as he ages. (He is 69 years young.) He needed to be on a modified diet. He continued to lose weight throughout.
This did not sit well with my Dad (nor me either) so I set him up with a rehab doctor that I work with and my Dad had seen in the past. On the first visit in November 2008, the doctor noticed fasciculations in his tongue and right hand weakness. He ordered some additional tests to rule out a couple of things and then found me at work. (My Dad had given him permission to do so.) He told me more about the fasciculations in his tongue and bicep and the next step was an EMG/NCS and that he could do it in his office. If the results were what he suspected he would refer my Dad to a specialist. I was in shock and thought no, he is just being thorough. We scheduled the EMG after the holidays. I told my parents that he had some concerns about neuromuscular problems and needed the test. As usual they did not ask further questions and this time I did not elaborate. I did tell my sister. The holidays sucked.
The EMG/NCS was not particularly diagnostic but the fasciculations were much more obvious and in both arms. He also noted weakness in both hands. He told my parents his suspicions and set us up with an ALS clinic. My Dad’s PCP and GI doc were given his reports. I think they had what I call the "Oh, sh*t" moment. Over the course of the year, my Dad had lost nearly 30 lbs gradually. He was quickly set up for PEG, overnight oximetry and sleep study.
We went to his clinic appointment last Tues and the doc concurred and stated he was 90% sure my Dad has bulbar onset ALS. He ordered some labs and will repeat the EMG/NCS next week. He was started on Rilutek. We were given some education and resource info.
My Dad had his PEG on Wed of this week and it went really well. His post procedure labs showed a slight increase in his WBC and he was found to have pneumonia. He is currently being treated and will be home tomorrow. He had difficulty with lip seal so his FVC is not considered good info. His ABGs did demonstrate that he is in chronic resp failure. He will be coming home with a bipap and pulm vest. The pulm doc at the hosp was not impressive. We have an appt this Mon with a pulm doc recommended by the ALS doc.
The more I learn the more obvious the diagnosis should have been but the past is the past and something we can not change. From what I am learning, the diagnosis process is complicated for many.
My Dad is not a dweller and has talked little about the diagnosis. Last year at this time he was remodeling his basement himself. He is still fairly mobile but his endurance is decreasing rapidly. He is more emotional - probably a combo of it being a symptom of ALS and the magnitude of being diagnosed with a terminal illness.
My Dad is amazing and has always had the gift for gab. He still has his voice but has poor breath support and gets more difficult to understand as the day goes on. I have a 45 min commute from work each day and it was my routine to call him everyday on the way home. If I missed calling him, he has always teased me he was waiting by the phone and why didn’t I call. Our daily call is becoming more difficult and I hate that!
I am glad to have found this forum as it has brought a wealth of info and so much hope. The initial info I found was gloom and doom and I am glad to know that people are living and thriving even with this horrible, horrible disease. My Dad and I are close and I have always valued his role in my life. Our roles are shifting but that is OK because I will do anything I can to provide him with quality, comfort and dignity.
I realize this is rather long and some probably stopped reading a while ago, LOL. It felt good to organize my thoughts.
Thanks for listening/reading.
Dana
In Feb 2008 he started coughing. At first his symptoms were treated as if he had a cold, then laryngitis, then there was a question of his significant history of reflux aggravating his larynx and throat and he was put on voice rest. VFSS revealed silent aspiration and he was placed on a modified diet and ST without really knowing why. Finally after MRIs, CTs, EGDs, etc. the docs told him he likely is having weakness from a stroke he had years ago that he had previously been able to compensate for that now he was losing the ability as he ages. (He is 69 years young.) He needed to be on a modified diet. He continued to lose weight throughout.
This did not sit well with my Dad (nor me either) so I set him up with a rehab doctor that I work with and my Dad had seen in the past. On the first visit in November 2008, the doctor noticed fasciculations in his tongue and right hand weakness. He ordered some additional tests to rule out a couple of things and then found me at work. (My Dad had given him permission to do so.) He told me more about the fasciculations in his tongue and bicep and the next step was an EMG/NCS and that he could do it in his office. If the results were what he suspected he would refer my Dad to a specialist. I was in shock and thought no, he is just being thorough. We scheduled the EMG after the holidays. I told my parents that he had some concerns about neuromuscular problems and needed the test. As usual they did not ask further questions and this time I did not elaborate. I did tell my sister. The holidays sucked.
The EMG/NCS was not particularly diagnostic but the fasciculations were much more obvious and in both arms. He also noted weakness in both hands. He told my parents his suspicions and set us up with an ALS clinic. My Dad’s PCP and GI doc were given his reports. I think they had what I call the "Oh, sh*t" moment. Over the course of the year, my Dad had lost nearly 30 lbs gradually. He was quickly set up for PEG, overnight oximetry and sleep study.
We went to his clinic appointment last Tues and the doc concurred and stated he was 90% sure my Dad has bulbar onset ALS. He ordered some labs and will repeat the EMG/NCS next week. He was started on Rilutek. We were given some education and resource info.
My Dad had his PEG on Wed of this week and it went really well. His post procedure labs showed a slight increase in his WBC and he was found to have pneumonia. He is currently being treated and will be home tomorrow. He had difficulty with lip seal so his FVC is not considered good info. His ABGs did demonstrate that he is in chronic resp failure. He will be coming home with a bipap and pulm vest. The pulm doc at the hosp was not impressive. We have an appt this Mon with a pulm doc recommended by the ALS doc.
The more I learn the more obvious the diagnosis should have been but the past is the past and something we can not change. From what I am learning, the diagnosis process is complicated for many.
My Dad is not a dweller and has talked little about the diagnosis. Last year at this time he was remodeling his basement himself. He is still fairly mobile but his endurance is decreasing rapidly. He is more emotional - probably a combo of it being a symptom of ALS and the magnitude of being diagnosed with a terminal illness.
My Dad is amazing and has always had the gift for gab. He still has his voice but has poor breath support and gets more difficult to understand as the day goes on. I have a 45 min commute from work each day and it was my routine to call him everyday on the way home. If I missed calling him, he has always teased me he was waiting by the phone and why didn’t I call. Our daily call is becoming more difficult and I hate that!
I am glad to have found this forum as it has brought a wealth of info and so much hope. The initial info I found was gloom and doom and I am glad to know that people are living and thriving even with this horrible, horrible disease. My Dad and I are close and I have always valued his role in my life. Our roles are shifting but that is OK because I will do anything I can to provide him with quality, comfort and dignity.
I realize this is rather long and some probably stopped reading a while ago, LOL. It felt good to organize my thoughts.
Thanks for listening/reading.
Dana