Old 02-22-2009, 05:16 PM #1 (permalink)
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Default My Dad's story...

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 Dadís 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 didnít 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
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Old 02-22-2009, 11:00 PM #2 (permalink)
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it is OK. We know how this feels.

I'm so sorry you have to be here.

Please continue to post, as we can all share.
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Old 02-23-2009, 08:06 AM #3 (permalink)
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Welcome ot the forum Dana. I am sorry to hear about your Dad. Let's hope his progression is slow! Cindy
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Old 02-24-2009, 01:27 AM #4 (permalink)
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Dana,

I understand all of your frustrations. I share many of them. Sorry you have to be here, but know you are not alone. Many are traveling the same path. I of a daughter to a mother with bulbar onset ALS. I remember when phone calls got difficult. I miss the ease of communication prior to ALS. Hang in there, I am always here to talk.

Love,
Holly
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Old 02-24-2009, 08:05 AM #5 (permalink)
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Dana, I understand only too well what you are going through. The parallels are numerous: my Dad was diagnosed with Bulbar Onset ALS in August 08. He too was always up to some project renovating something, building something. He was an extraordinary gardener and could make anything grow. My Dad is also very emotional now however he did not dwell on his diagnosed and he is the bravest man I have ever known. The emotions are harder to hide because of the ALS (my Dad was a very stoic man before) but he does not cry inappropriately. In the 6 months since his diagnosed, his speech has deteriorated considerably and he has weakness in his arms and legs but he is still walking and he loves bob around in the pool.

My sister and I were talking the other day and we are still in shock really. It does not seem real. It is so very difficult to face and it's good that you found this forum so that you can share your feelings and know that you are not alone. The people on this forum have so much wisdom to share with you and there is so much support here.

All the best to you and your family. Feel free to communicate whenever you feel the need. Know that you are in my thoughts.
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Old 02-24-2009, 09:15 AM #6 (permalink)
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Dana, like so many on this forum who have been diagnosed, we are sorry that you need to be here. We have all been there and in our own ways move on from the dreadull days of being newly diagnosed.
We told our adult children on the phone (all in their thirties) and then we could not face them for 2 weeks, we were so upset, as were they. It takes a lot of getting used to. The best practical advice I was ever given, was to be prepared for what you need well before you need it. I took a long time to get used to the idea that I would need a lift to get upstairs, I was really upset when people came to look at the house to discuss options...then we ordered one in August, for fitting in November...so many problems accured that it was not fitted until early January this year, JUST in time as I can not even crawl upstairs now. Look into practical devices early and get whoever mnd/als/healthcare support involved early so help is at hand as and when you need it or a bit earlier. Try to make this dreadfull journey as easy as you can. And thanks to this forum, ask for advice. Wishing you and your family all the best.
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