Old 07-30-2009, 06:14 PM #1 (permalink)
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Default My Father new to ALS

We were just told yesterday that my father's doctor thinks my father has ALS. The doctor didn't offer us anything positive. No, here some support group info, theres some new drugs to take, here are some Adavan/valum to calm your nervs, nothing. He just wants to do a muscle biopsy.
My father is freaked out and thinks he is going to die in 6 months and it will be a horrible death.
What I've done is joined this group and called a 800-681-9851 to see about any local support groups.

Thanks,
Heather
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Old 07-30-2009, 06:57 PM #2 (permalink)
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Hi Heather,
Welcome to the forums.
This is a great place to gather thoughts and information that is way closer to the truth than a lot of the BS on the net. With that being said , only a good neurologist should be diagnosed'ing ALS.

I am sorry for your father's issues.

From what I have read I have more questions than answers.
Was that doctor a neurologist specializing in MND diseases ?
What tests have been done ?
Where did your father get those numbers from ?

Yes , a ALS diagnosis will freak you out.
Its all about positive attitude and maintaining your energy.
The average that is told is 2 - 5 years. But thats BS , because everyone is different , everyone. I believe that the more positive you are
the longer you are here. If you give up , it gets you.

I know , I have just given you more questions, but dont accept a diagnosed of ALS lightly, tell them "I THINK" is not enough.

Please feel free to ask questions, or just let it all out.

Does you father surf the 'net ?

Glen
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Old 07-30-2009, 07:09 PM #3 (permalink)
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Heather
Welcome to the forum although I am sorry for the reason you are seeking information. Glen posted some good questions to you. With answers, the PALS here might be better able to help you. Ignore the gloom and doom statistics because truly no one knows the answer when it comes to ALS. The people on this forum are wonderful, positive and very helpful
Dana
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Old 07-31-2009, 11:09 AM #4 (permalink)
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Thank you for your replies. My father saw a good nueurologist at OHSU (Oregon Health Sceince University). He was really good at doing the exams and having tests done, he just wasn't good at telling us. My is 70 years old and has always had pretty good health his entire life. Last fall he noticed his hands cramping, then in the winter he noticed his arms getting tired then this spring he couldn't lift his arms over his head and his tongue became think making his speech different. He's also been fighting a cough for about 6 months. He lives in a small town in Alabama, Elberta. He saw the doctor down there and they weren't sure what was going on but they did mention ALS. He was coming to visit me in June, I live in Vancouver Wasington right next to Portland Oregon, so I made him some doctors appointments. OHSU did a lot of bloodwork and an EMG. The doctor also examined my doctor for about an 40 minutes. That's when we realized how much his upper body had atropy. He's lost a lot of his muscles in his arms, hands, shoulders, neck and back. The doctor's name is Dr. Cupler and he's suppose to be a specialist. The doctor will be doing a muscle biopsy next friday to confirm his diagnosis.

I have never heard of Bulbar. I am seeing that here in this forum. Is that just a type of ALS?

The local ALS socail worker called me back last night and was very helpful. He told that OHSU is a very good place to go but they aren't very warm and fuzzy. He also recommends another doctor here in town. I'll give their office a call. He was very positive and made me feel a little bit better about everything.

Thanks,
Heather
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Old 07-31-2009, 12:51 PM #5 (permalink)
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Hi Heather, sorry about your dad. There are two main forms of ALS, limb onset (about 75% of cases) and Bulbar onset (25% of cases). Bulbar onset means that the areas first affected are the tongue, lips and throat. These are areas controlled by the bulbar region of the brain. Usual bulbar onset first symptoms are slurred speech followed by difficulty eating and swallowing. As the disease progresses then symptoms usually spread to the limbs and the reverse is also usually the case for limb onset PALS who experience bulbar issues after.
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Old 07-31-2009, 12:54 PM #6 (permalink)
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WOW Heather,

You are doing an exceptional job of getting your dad looked after. I commend you. You are taking the steps that need to be done.

Thank you for the more detailed info. I see that your list of good contacts is growing. That is good.

Please feel free to ask anything of us, though , its the doctors that will give the final word.

Glen
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Old 07-31-2009, 03:46 PM #7 (permalink)
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Do the research you need to do. If he does have ALS: Do everything your father desires to do, within reason, while he is able. Utilize any and all help you can get. Try to get him to accept bipap, peg tube, and any other coping devices before he really needs them. Keep his weight up as best you can. And most of all, love him through this journey. You will all need all the support you can get and when the days are overwhelming, remember many have traveled this road before you. It can be handled with as much dignity and strenghth as you and he are willing to muster. There is no time frame for ALS. It progresses as it chooses. Tell him not to focus on the future. Tell him the time to live is now.
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Old 08-11-2009, 01:05 PM #8 (permalink)
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The first thing to do is take a deep breath! The second thing is to go to a neurologist/clinic that specifically deals with treating ALS. My father was diagnose 3 years ago after we finally went to the right place. Although he recently lost his battle with the disease the people we met at the UPenn ALS clinic were absolutely wonderful in helping our whole family deal with the this disease. They helped us to find resources, set up home care, get equipment and more importantly let us all deal with the emotions. Support is essential to getting through this- don't be afraid to ask for it. Your Dad should live life to its fullest as long as he can and with the support of family and friends. One thing I recommend is having those hard discussions early on- get it out of the way so you can enjoy the time he has left living life the way he wants to.
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Old 08-11-2009, 10:30 PM #9 (permalink)
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I would recommend contacting your local MDA office as well. They have some fabulous materials for the patient and the caregiver.
ALSA also has good reference materials. Also, if you think it's needed, contact a dr. re: valium or xanax for both you and your dad.

I am so sorry. I remember the gut wrenching sickness during this time. Be good to yourself.
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