Old 01-07-2012, 03:08 PM #16 (permalink)
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Default Re: Hello, new to this forum.

So sorry for your husband's diagnosis. My husband passed away in August. We were married for just over 30 years. I will treasure our memories forever. Hope you're doing the same, past and present. Yasmin.
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Old 01-09-2012, 09:57 PM #17 (permalink)
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Default Re: Hello, new to this forum.

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Welcome back Dana. Jump in when you like.

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Hey Al~ How are you? Any words of wisdom?

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Old 01-20-2012, 03:13 PM #18 (permalink)
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Default Re: Hello, new to this forum.

Hi Lakelover. I think we have much in common. My husband is in the process of being diagnosed with Bulbar Onset ALS. Our local neuro says he has it, is being referred to Duke ALS clinic, goes Feb. 28th for all the tests. It's all so overwhelming. He is 60, we've been married 39 years, have two adorable grandchildren and were/are looking so forward to retirement together. Looks like our dreams are being dashed. He is still working 50+ hours, golfs and travels. His speech is very slurred, I don't know how he does it working in sales. Swallowing is getting tough, he avoids certain foods. Nights he has a hard time sleeping due to dry mouth and gasping for air. I dread the appointment on the 28th but on the same hand will be glad to finally have it all spelled out. Just wondering how you are handling all this since we are so similar and using the same clinic. I'm leaning on our faith and family to get us through. Blessings to you!
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Old 01-21-2012, 12:50 AM #19 (permalink)
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Default Re: Hello, new to this forum.

Hi Dana. Just take it one day at a time. A glass of Merlot helps once in a while.

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Old 01-21-2012, 05:41 AM #20 (permalink)
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Default Re: Hello, new to this forum.

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Hi Dana. Just take it one day at a time. A glass of Merlot helps once in a while.

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You are like this wise grandfather of this ALS Family. Always tells it how it is, full of info, and gives great advice with very few words. I wish you were my GrandpAL. you get 5 smiley's
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Old 01-25-2012, 06:28 PM #21 (permalink)
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Default Re: Hello, new to this forum.

My husband started with the bulbar palsy as well. Looking back he actually began slurring words in 2008 when he had his top teeth pulled. We believed for a long time that it was the dentures and him fighting them that was causing the problem. He was diagnosed with Bulbar Palsy in 2010. This last year has seen a big change, speech harder to understand, swallowing anything very difficult, especially pills and he refuses to even discuss getting the Peg Tube. Our doctor recommended it and we had a appointment for consultation but he told me to cancel it. I know all the choking has to bother and hurt him and it certainly concerns me along with sometimes annoys me. Shame on me for saying that!

My hubby has been on Rilutek for over 6 months and has not had any side effects. Thank you God!

It's wonderful that you have had 60 years. We've had 40 (second marriage for both of us) and we are in our 60's/70's. We've had a great life and it's not over till it's over and we will still have some good days, at least that's my prayer. Some days I wonder! Sorry, don't mean to make this about us. I'm glad your here, jump in any time. It's really great to read about others and what they do to handle different situations.
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Old 01-26-2012, 10:45 AM #22 (permalink)
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Default Re: Hello, new to this forum.

It's good to have support from this site. My husband is having surgery on Monday due to an infection in his knee. He has been battling these infections since 2009. Anyway this particular surgery is necessary because of profuse drainage. They are going to debride area and remove patella. PEG tube is going well. Lots of burps! Hopefully with the nutrition he will be able to withstand more surgery. He has always been a strong man. I will stay with him in the hospital as his speech is not understandable most of the time.
I know all of you are going through your battles. Hugs to all who are suffering.
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Old 01-26-2012, 10:48 AM #23 (permalink)
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Default Re: Hello, new to this forum.

Good luck to your husband and his upcoming surgery. I hope its successful, and you both eventually have one less medical issue to be dealing with.
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Old 01-27-2012, 12:34 PM #24 (permalink)
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Default Re: Hello, new to this forum.

wishing your husband the best
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Old 01-27-2012, 04:27 PM #25 (permalink)
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Default Re: Hello, new to this forum.

Best wishes for Monday's procedure. Our prayers will be with you.
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Old 02-06-2012, 05:20 PM #26 (permalink)
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Default Re: Hello, new to this forum.

Got home from hospital last Thursday after surgery for knee infection with removal of kneecap. Taking IVs daily at home and doing okay.
One question is when do you consider a suction machine. Had an episode of choking (strangling) on saliva yesterday that was frightening. Doctor has not suggested suction machine. Do you think I should push for one? Do not know what to do when he is choking.
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Old 02-06-2012, 07:04 PM #27 (permalink)
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Default Re: Hello, new to this forum.

call your doctor now best to have things before hand ... and ask for a cough assist
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