Old 04-03-2013, 06:57 AM #1 (permalink)
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Default Newly diagnosed - Bulbar Palsy/ALS - Help?

My husband was diagnosed with Bulbar Palsy with onset ALS 6 weeks ago. His first symptoms of slurring and speech difficulties were noticed a year ago. I am the only person he has told. I am concerned that our teenage daughters and his parents should be told sooner rather than later, however he feels he is not ready to do this and I want to respect that. What are your opinions on this issue? Some feedback on how you handled this would be so appreciated.
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Old 04-03-2013, 12:49 PM #2 (permalink)
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Default Re: Newly diagnosed - Bulbar Palsy/ALS - Help?

educate yourself completely about als so you will be prepared to answer their questions, educate them on what lies ahead, whats available to extend life expectancy, and your desire to stay positive and live life to the fullest. but tell them as soon as possible, they will want to know why the slurred speech that dosen't go away and its better coming from you than somebody else who knows what slurred speech might be
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Old 04-03-2013, 01:24 PM #3 (permalink)
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Default Re: Newly diagnosed - Bulbar Palsy/ALS - Help?

My husband was recently diagnosed and we told everyone we knew right away. It is wonderful to know that people care and offer their support. sometimes it is hard for someone to respond to learning about this disease but most friends and family have responded and are keeping in touch and praying for him and for me. We are in our late 70's and have been healthy until now. quite a shock but life goes on and we are taking it one day at a time and are being comforted. I wish the same for you and your husband.
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Old 04-03-2013, 01:42 PM #4 (permalink)
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Default Re: Newly diagnosed - Bulbar Palsy/ALS - Help?

I ditto what Pearshoot said. Educate yourself; be prepared, but realize that everyone is different.

My father had bulbar palsy and lived 17 years. He died from a heart attack. My sister and I both have bulbar palsy symptoms that went into ALS. Sis has been 10 years with mostly bulbar symptoms. Me I had bulbar symptoms for 6 years, then progressed to balance problems and leg weakness. I tell you this because although it was very hard in the beginning, I now feel that living each day to the best of my capacity is the only way to go.
Peace to you and yours.
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Old 04-03-2013, 02:10 PM #5 (permalink)
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Default Re: Newly diagnosed - Bulbar Palsy/ALS - Help?

I agree with pearshoot. How about inviting someone from the ALS Association to share and talk...like a family meeting. Might take some pressure off you and your husband. Just an idea Good luck!
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Old 04-03-2013, 02:42 PM #6 (permalink)
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Default Re: Newly diagnosed - Bulbar Palsy/ALS - Help?

I, too, agree with the above responses but also can understand your husband's reluctance to discuss his diagnosis. It's very difficult for a previously healthy person to get his mind around the fact that he has an incurable disease. If his symptoms aren't progressing at a rapid rate, give him a little time. I don't mean years; maybe a month or two. He may get tired of people assuming he has had a stroke, is suffering from some kind of dementia, etc. and decide it is easier to explain the facts.
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Old 04-03-2013, 05:31 PM #7 (permalink)
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Default Re: Newly diagnosed - Bulbar Palsy/ALS - Help?

One thing to think about... you're going to have to tell them eventually. Are they going to resent that you didn't trust them enough with this important information? One of the first things we were told was "ALS is a family disease"... their lives WILL be effected. They already know something is wrong... where are their imaginations going to take them if you don't keep them informed and involved. As you can tell.. I'm a big advocate of telling family sooner rather than later. If your husband lives a long productive life with this disease, that's AWESOME. Mine lived one year from diagnosis. Our son knew what was going on and was able to treasure what good times there were.
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Old 04-03-2013, 10:56 PM #8 (permalink)
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Default Re: Newly diagnosed - Bulbar Palsy/ALS - Help?

my husband also refused to tell anyone about the ALS. Everyone knew something was wrong--some thought a stroke and some thought he had become a drunk. Our poor kids--they didn't understand and they were expecting their dad to get well. The stress it put on me to lie and cover up the truth and not get any emotional support was awful. finally our oldest daughter asked me point blank what was really wrong with dad and I told her the truth. Then I had to tell all my kids---next everyone we knew. It was actually a huge relief.

I can't blame him for not wanting to believe he had ALS and can't tell you when is the right time to tell everyone. Most people choose to tell right away and are usually glad they did. I think you should try to set a date with your husband that he will be comfortable with--remind him that people especially family members are already noticing changes. Good luck!

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Old 04-03-2013, 11:15 PM #9 (permalink)
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Default Re: Newly diagnosed - Bulbar Palsy/ALS - Help?

I was diagnosed, April 5, 2012. My neurologist said to us then, that it was his experience that people are generally especially sympathetic when they learn someone they know has ALS.

He was not wrong! Once you get it out there, it's a relief! People are extraordinarily kind. A year in... and we are still dumbfounded by the kindness, love and support which envelops and nurtures us, every single day!

Once you share the load, you'll be free to discuss it and gather all the information you can!

I'm very sorry you are facing this, but you are not alone.
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Old 04-04-2013, 05:37 AM #10 (permalink)
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Default Re: Newly diagnosed - Bulbar Palsy/ALS - Help?

Thank you so much for your replies. Being able to connect with all of you is absolutely amazing, I can't tell you the relief I feel knowing we are not on our own in this and that there are people out there who understand. I will pass on what you have all had to say to my husband. Are there any sites or blogs you would recommend for us to read? Thanks again for taking the time to respond.
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Old 04-08-2013, 05:38 PM #11 (permalink)
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Default Re: Newly diagnosed - Bulbar Palsy/ALS - Help?

I know of a blog by a friends co-worker 'Twisted Sam'

Another good one is written by a nurse who has ALS, ++++ 'Come n somebody help me with the name' .........

A place i love is Patients like me. it is a neat forum type sharing community of patients. They can share all kinds of data with others.

I also like ALS Untangled. Helps you weed out and get the real information on Alternative treatments for ALS. My former Neuro is on the team.

OF COURSE The big ones...ALSA, MDA, etc.
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Old 04-18-2013, 01:09 PM #12 (permalink)
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Default Re: Newly diagnosed - Bulbar Palsy/ALS - Help?

Poppies,

I think it is important to involve all of the family in this incredibly difficult journey. You will all react and mourn differently and I think it is important to have as many people around you and your husband to support your physical and emotional needs. I would love to just keep my emotions bottled up but I'm so thankful to have a sister who cracks me open to let out the pain. It really does help. Best wishes!
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Old 04-19-2013, 12:23 AM #13 (permalink)
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Default Re: Newly diagnosed - Bulbar Palsy/ALS - Help?

poppies
the name of the site by the nurse that has ALS is.

ALS from both sides
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