Old 10-04-2015, 03:12 PM #1 (permalink)
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Default Scared and heartbroken, husband of 20 years diagnosed on 10-2 with ALS

My husband was just diagnosed with ALS. In December of last year, he was the pedestrian,in a pedestrian vs auto accident. Shortly before the accident,he complained of losing strength in his left hand and we noticed some twitching under the skin. We thought it might be arthritis,and didn't do anything for it. In December, he was hit by a pickup while crossing a highway,from the motel to a truckstop. He ended up with a shattered pelvis,broken hip,his spine was broken away from his pelvis. He also had internal bleeding. After ten days in the hospital,I brought him home to Colorado. He started going to physical therapy and learning how to walk again. We thought we were so lucky that he was still alive. After several weeks in physical therapy, his therapist commented on the fact that his muscles in his right hand were wasting and then he saw the fasciculations in both of his arms. He told my husband that day, that he knew it was ALS, because he had recently lost a friend with ALS and lost two other members from his church. I hated the man for what he told my husband. I felt that a physical therapist was not qualified to make that assumption. He then contacted the primary doctor in my husbands care to order some EMG's. Which they did, he was sent to a physiatrist. He confirmed what we were told by the therapist. But just to make sure, he sent my husband to a neurologist, which took 3 months to get into. On Friday, he got was actually able to send him up for more EMGs, after a cancelled appointment from someone else,when we went back to see the doctor,he came in and gave the diagnosis. My husband was in the Navy, and has already contacted the VA, they said to come right in when he had the actual diagnosis. We are scared. He was having the symptoms a good three months at least before the accident. Now his left hand is showing the same symptoms.
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Old 10-04-2015, 04:14 PM #2 (permalink)
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Default Re: Scared and heartbroken, husband of 20 years diagnosed on 10-2 with ALS

I am sorry to welcome you and sorry your husband has already been through so much.

I would have been angry at the PT as well but at least you got on the right path horrible as it is. You should have an opinion from a neuromuscular specialist either through the ALS or civilian. Was this last person a general neuro?
One of our members is a vet from Colorado so he can probably give you specific pointers but call the PVA if you have not yet. They will help and read the stickies especially the VA one. Print it out if you can
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Old 10-04-2015, 04:40 PM #3 (permalink)
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Default Re: Scared and heartbroken, husband of 20 years diagnosed on 10-2 with ALS

I concur with what Nkki said.

I too am a vet (and I too live in CO). The PVA (paralyzed veterans of America) is invaluable in cutting through the piles of VA red tape. I speak from experience. Contact them ASAP. http://www.mscpva.org/
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Old 10-04-2015, 09:00 PM #4 (permalink)
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Default Re: Scared and heartbroken, husband of 20 years diagnosed on 10-2 with ALS

So sorry to welcome you here. This is a serious rollercoaster, but with the VA you have the best support for ALS that is available to anyone. Do read the stickes. Try to stay ahead of the disease by having equipment in place before it's needed. You'll see a lot about that in the stickies--they are invaluable.
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Old 10-04-2015, 10:53 PM #5 (permalink)
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Default Re: Scared and heartbroken, husband of 20 years diagnosed on 10-2 with ALS

Welcome, Piner. Sorry to make your acquaintance here under such circumstances.

I found the Paralyzed Veterans of America really knew their stuff. Also, the VA was incredibly responsive and generous and helpful. Call Social Security. Do you have kids?
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Old 10-04-2015, 11:33 PM #6 (permalink)
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Default Re: Scared and heartbroken, husband of 20 years diagnosed on 10-2 with ALS

Thank you to everyone who answered. We do have a daughter who is 30, and we have our grandson, who is 9. He spends 50 % of his time with us at least. My daughter holds a full time job and is going to college. First thing tomorrow, he will contact the VA again, now that we have a diagnosis. The physical therapist is actually a great person, who has invited us to his church and provides a lot of moral support. He has invited my husband to go to lunch next week so they can go through some things that we need to know. Dr. Adams is the doctor he saw on friday. He is from the Colorado Springs Neurology Association. I am not sure if he is a general neuro? or not. He and the doctor who did the EMG's are both military. I tried to answer as many of your questions that I could. I appreciate everything that all of you have said and shared with me. My husband is 52, and was in good health before all of this. Please know that I appreciate any advice and that I am thinking about you all too.
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Old 10-05-2015, 12:53 AM #7 (permalink)
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Default Re: Scared and heartbroken, husband of 20 years diagnosed on 10-2 with ALS

I am sorry for what you have been through. Some PTs have substantial ALS experience and evidently your new friend is one, which is a plus. Dr. Adams is a general neuro who served w/ the Air Force. For a 2nd neuro opinion, or you could go to the UC (MDA) ALS clinic in Aurora or CNI (ALSA) in Denver. Meanwhile, you could start the VA processes since you do have a diagnosis.

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Old 10-05-2015, 08:28 AM #8 (permalink)
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Default Re: Scared and heartbroken, husband of 20 years diagnosed on 10-2 with ALS

Pines, sorry you have to be here. Think almost everyone goes for a second opinion because of the difficulty in diagnosing this. With the VA benefits, do start now requesting everything as this will alleviate many worries about finances. The PVA will be your best friend in this.
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Old 10-05-2015, 01:07 PM #9 (permalink)
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Default Re: Scared and heartbroken, husband of 20 years diagnosed on 10-2 with ALS

Pines, don't contact the VA, contact the PVA as noted above. You will choke on paperwork and delays if you try to work the VA directly.

UCH in Denver was my 2nd opinion source, and for one of our peers in Pueblo, too, mkboreson.
Doc Ringel is their 'gray beard' ALS expert
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