Old 01-04-2008, 11:33 PM #1 (permalink)
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Unhappy My Mom Just Dx With Als At Age 59

NEW TO THIS..... ANY HELP WOULD BE APPRECIATED... I HAVE BEEN RESEARCHING, BUT TO NO AVAIL, I AM AT A LOSS FOR WORDS... MY MOM HAS BEEN JUST DX WITH ALS... SYMPTOMS FOR ABOUT 7YRS AND COUNTING. SHE WAS DX ON THE 13TH OF DEC AND WAITED UNTIL TODAY TO TELL ME...DON'T GET ME WRONG I UNDERSTAND... JUST FRUSRTAITED. COULD ANYONE TELL ME LIFE EXPECTANCY? SHE HAS SYMPTOMS: IE: SHE WEARS A BRACE ON HER LEG UP TO HER THIGH AND NOW SYMPTOMS INTO HER HAND & WRIST. THEY DID A CT SCAN TO DETERMINE HER DX. AND EMG.
I AM SORRY IF I AM RAMBLING. JUST NOT READY TO LOSE ONE OF MY PARENTS. GUESS WE NEVER ARE...ARE THERE ANY RESOUCES OUT THERE THAT ARE RELIABLE?
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Old 01-05-2008, 12:32 AM #2 (permalink)
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Hello. This is one of the better sites for good reliable information from people that are dealing with the same situation you are in. There is a search feature above. Try using it to find information and if you can't find what you need just ask. Sorry about your mom's diagnosis but you have found a good place for info and support.
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Old 01-05-2008, 04:51 PM #3 (permalink)
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Hi Creative,

The typical life expectancy for ALS quoted by medical professionals is 2 - 5 years, but it sounds like your mother's progression is much slower than most.

Mike
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Old 01-05-2008, 04:56 PM #4 (permalink)
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Hi! Welcome to this site. Sorry about your mom. Life expectancy varies because each case is different. I was told when my 58 year old dad was diagnosed that it could be 2-5 yerars after he was diagnosed. I would highly recommend going to the als.org website and read some of the information on there it has helped me to understand it more. This form is great like AL said if you have a question just ask we are all here to help each other. Keep your head up and enjoy your time with your mom because we never know what tomorrow will bring us! God Bless You and your family!
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Old 01-05-2008, 05:53 PM #5 (permalink)
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Default Thank you all who have replied...

Met with my Dad today, and after thinking he knew (which he didn't) we both shed some tears and wondered where do we go from here? My mom is in total denial. She was off doing her thing. I am blessed she still can... I guess I just am looking for her to open up talk about it. My dad & I are sitting here dazed & confused as to why she is not wanting to confront this thing head on with the support we can give her. I guess I will continue to research and believe me we will be going with her on her next appointment to get some well needed answers. I appreciate the support in the people from this site. So thank you from the bottom of my heart & may all of you be blessed. DeAnna~
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Old 01-05-2008, 10:56 PM #6 (permalink)
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Hi DeAnna. An ALS diagnosis is similar to the stages of grief. Denial, anger, bargaining, depression, acceptance.Most people go through the stages and finally come around to be able to talk about it. Some take longer than others. Be patient.
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Old 01-06-2008, 08:08 AM #7 (permalink)
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Hi DeAnna- Al said it all about the normal stages of grief. And don't forget your Mom has had more time to get used to this idea that the rest of you. Even if her DX is recent, she probably knew for some time that her body was failing.
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Old 01-06-2008, 10:29 AM #8 (permalink)
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Al, great post! You said it so well, and I agree with you 100%! Al, it brought tears to my eyes, and still crying when I got to the part about them knowing that their body is failing. How scary that must be! God bless you Pals!

Irma
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Old 01-07-2008, 09:29 PM #9 (permalink)
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hi there.

i am so sorry to hear about your mom's diagnosis. my aunt was diagnosed about a year and a half ago. i haven't been on this site for a while because i needed a break from all of the information. that happens after the diagnosis is fresh. you'll find yourself searching and searching. you'll probably try to get your mom to face it faster than she wants and learn more than she cares to learn right now. the best advice i can give you is to love her and let her face ALS in her own time. it's an impossible diagnosis to accept at first so i am sure she is very scared... as are you and your father. stay connected to the people on this forum. they are resilient and so incredibly helpful. you'll find much love and support among your new friends here.

love and prayers to you,
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Old 01-15-2008, 05:57 PM #10 (permalink)
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Default Dx PLS to ALS

Hi, I've been viewing this site for awhile. My husband had another EMG 1/14/08. The dr saw more of a lower motor involvement. This past 1yr 4mos thought that it would only be upper motor neuron. I guess I thought all along that we would get this news. I'm an RN and I saw all of atrophy in his hands,arms and legs. HE has fallen a couple of times and now uses a cane. That was difficult for him, a pride issue, he's only 47. That has really helped him with his balance. As I read some of peoples forum comments I can see we are all going through a grieving process. I've talked to my husband about grieving the life we won't have. As the kids are leaving,we were hoping to travel and see things. I think that is what I'm "mad" about. I know God is in control. If it wasn't for our faith and people praying, I think we would be going crazy. The frustrating thing is we love to be together and have fun just doing the simplist things and now that's numbered. I will be by his side through all of the good and bad,I vowed that. I thank you for letting me say this. I can say it to some frinds,but they are not going through this personally. Our communication has greatly improved through all of this. I don't want to waste a single minute in a silly misunderstanding. Thanks again all.
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Old 01-16-2008, 06:13 PM #11 (permalink)
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Hi DeAnna-
My mom was diagnosed at 58 yrs. old close to 1.5 years ago and I have learned that each family member has their own course and method of acceptance. Sometimes it is easy to forget that we're not all on the same page of processing the diagnosis. I filled my head with everything ever written on ALS after learning of the diagnosis and wanted to talk about it - constantly. I thought everyone wanted to talk about it as much as I. After a few months, I gave the research a break and went back to talking about everyday life. My mom talks about life with the disease more today than before but allowing her the time to come around is something I should have done in the first place. Live and learn.
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Old 01-17-2008, 05:08 PM #12 (permalink)
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Hi APC,

It is not too late to travel. Jen and I have been on several trips since my diagnosis. It takes some extra planning, but it is well worth the effort.

Mike
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Old 01-17-2008, 06:32 PM #13 (permalink)
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Hey, Where did you travel to? We always talked about going to Europe for our 25th. We may take it early. I know in Europe thry don't have the handicapped accessabilities like they do here in the states. Knowing that it is a good chance for him to travel will help him a lot. We're still trying to handle the diagnosed. We knew it would eventualy come with the symptoms he was having and the dr. visits. It's just the reality. What type of extra planning did you have to do? Do you have your own motorized chair, any other type of assistance devices. He walks with a cane,but tires easily. Any information would help alot. Thanks
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Old 01-17-2008, 07:18 PM #14 (permalink)
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Hi APC,

I have been to:England, Ireland, France, Holland, and Scotland on a cruise before my wheelchair. I visited Australia, Alaska, Mexico, The Panama Canal, and several American cities in my power chair with a Bi-Pap. If your husband can still walk safely with a cane, and doesn't require any breathing assistance, then there is no extra planning required.

I recommend cruises because you only have to unpack once, and you can explore many ports. Shore excursions are also clearly labeled as to required mobility level.

For articles about travel at later stages of ALS (more equipment), take a look at my website. I will be happy to answer any further questions that I have experience with, or knowledge of. We are currently planning our first air travel with the vent, so I have gathered alot of info that is not yet posted on my site.

Mike
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Old 01-18-2008, 12:58 AM #15 (permalink)
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Dear DeAnna, your mum sounds like mine was after diagnoses "off doing her own thing".. I am so proud of her for being that way.
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