Old 01-06-2011, 08:07 AM #1 (permalink)
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Default Duke ALS clinic update

Just wanted to update everyone on our visit to the Duke ALS clinic. It was a very long day and my husband actually gave out before the Duke clinic did. Dr. Bedlack and his staff are awesome. Of course one final EMG was the slam dunk for my husband's ALS diagnosis. The doctor basically took a few more vials of blood on the 1% chance that it could be anything else and to do the test for a genetic link. We left with a definite ALS diagnosis and about 9 prescriptions, one for the Rilutek medicine and the others for equipment. They are already sending someone from home health care to do a breathing study on him as the Dr. did not want to wait a month until our next visit. I am pretty sure my husband will need a bi-pap or something soon. He also went ahead and discussed the feeding tube. He mentioned that he usually doesn't like to discuss these things on the first visit but due the rate of progression he felt he had to. My husband is pretty reluctant about that but the doc said that if his breathing decreases much more he won't even be able to do it. I would like advice because his mom, dad, and myself feel we should push him a little bit to go ahead and do that soon as if he doesn't, I don't think he really understands how little time he might have left here. My husband is young (I am 9 years older w/2 sons) and a bit naive at times, although we don't treat him that way. He was never married before or had children. He is painfully thin and if not sitting up properly has a great deal of difficulty swallowing anything. The social worker at the clinic is amazing and has already jumped on many issues. At least we don't feel so alone anymore. Eric's dad was awesome during the whole trip and must be exhausted after physically transferring Eric over 10 times in two days. They are looking to get us a loner power chair until the disability comes through and they add medicare. Then he may be able to get a custom chair as his 6 ft. 3. frame doesn't work too well with the conventional. We are also looking at finding a used accessible van as the past two days were almost impossible with trying to get him in and out of a car. It was good that they kept us busy asking questions as too much down time allows all of us to think of how quickly he is slipping away from us. Thanks to everyone on this forum who has helped me through these times before we got any support. Maybe as we go through this I will be able to return the favor and help others here to find answers.
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Old 01-12-2011, 09:48 PM #2 (permalink)
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Default Re: Duke ALS clinic update

I am very sorry for your husbands diagnosis. He is very lucky to have you by his side. I am sorry you had to find this forum, just know we are here to support you and answer your question. God Bless you and your family!
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Old 01-12-2011, 09:58 PM #3 (permalink)
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Default Re: Duke ALS clinic update

Sorry about the diagnosis. Wish it couldve been something else.
On the peg issue. You could tell him that it is a good idea to get one now- before he NEEDS it needs it- just so its in place.
And when the time comes, if he decides he doesnt want to use it, he doesnt have to. But it will at least be there if he does want it- in case his breathing declines too quickly.
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Old 01-12-2011, 10:03 PM #4 (permalink)
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Default Re: Duke ALS clinic update

I sure am sorry about the diagnosis, and how fast he is progressing. Alot to process I know. Take care
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Old 01-12-2011, 10:09 PM #5 (permalink)
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Default Re: Duke ALS clinic update

i know its hard hearing thoes three letters. atleast the wondering is over. take things one day at a time. and educate yourself with whats to come prpair months inadvance. it helps. remember you both are never alone in all this
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Old 01-12-2011, 10:47 PM #6 (permalink)
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Default Re: Duke ALS clinic update

My thoughts are with you. Having been in your shoes, we all know how hard this is.
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Old 01-13-2011, 07:57 AM #7 (permalink)
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Default Re: Duke ALS clinic update

I am sorry too that this is the news you had to hear. You are in good hands with Bedlack and his staff. We, too, have nothing but good things to say about everyone at the clininc and never leave feeling alone.

Prayers of peace and grace for you and your husband,

Mary
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Old 01-13-2011, 09:13 AM #8 (permalink)
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Default Re: Duke ALS clinic update

Thank you for you post. I have been waiting 3 months for my first visit. I will be going to Pittsburgh for Dr. Lacomis. Hopefully I come out of there feeling helped and supported as you do. You have a good attitude for helping your husband. As bad as your situation is your post was actually uplifting!
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Old 01-13-2011, 03:43 PM #9 (permalink)
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Default Re: Duke ALS clinic update

I am so sorry about your diagnosis i was told feb5 2010 . it nothing getting g-tube you go in morning and then in evening go home . he will have pain at first but they will give pain meds. i was still eating when i got mine but i couldnot get enough calories to maintain weight, i didnot mind i was over weigth but dr didnot like it. you can eat while still having g-tube you just don't feel pressure to eat so much, you eat just what you want. my prayers are with ya'll.
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Old 01-13-2011, 11:43 PM #10 (permalink)
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Default Re: Duke ALS clinic update

so sorry wish there was a way to comfort you but know how you feel
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Old 01-18-2011, 12:21 AM #11 (permalink)
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Default Re: Duke ALS clinic update

Catcaniac - Duke ALS Clinic was where we went to get a final diagnosis for my husband exactly 3 years ago. Sounds familiar to your visit with that "slam dunk" EMG -- ouch! Dr. Bedlack and the entire team were great -- very thorough in the process as well. We eventually transferred to the Mayo Clinic in Jacksonville, as it was an easier trip for us to attend clinics. I truly believe 4 things have prolonged my husband's life: rilutek, bipap, PEG and the grace of God. Got the PEG just as the breathing hit 47% and used it at first for supplemental calorie intake. Then gradually moved from eating by mouth to only using PEG. It has been a blessing to have it for meds as time goes on. It was a little rough day of surgery-- but in and out in same day. The hardest thing was traveling home over bumpy roads after the surgery. I highly recommend this procedure. He has had it since summer of '09. You are in good hands as you begin this life-changing journey. May you and your husband grow closer than ever and enjoy each new day together. God bless.
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