Question about ALS

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TRLESH

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I was finally able to get my mom in to see a new primary care doctor here in Hawaii and as it turns out, the doctor's father passed away in March from Lou Gerhigs. He said that when ALS strikes younger it progresses faster. When it is diagnosed in someone older is progresses slower. I find those very broad statements to make. Does any one have a take on progression based on age?

Thank you in advance!
Tracy
 

brooksea

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Tracy,

Those are very broad statements, indeed!

ALS progresses at a different rate and affects different muscle groups in each individual. There is no set pattern of the disease to look for, other than gradual muscle wasting that is unique to each pALS due to denervation.

Hope this helps put things in perspective for you.

I really don't think a GP is qualified to address ALS. You need an ALS specialist or at the very least a Neurologist. The complications involved with ALS are many, although your GP may be aware of this, he may not know how to address them in advance in order to help you through the medical maze of insurance, etc...
 
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anneinma

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I agree that is a broad statement. My dear husband was perfectly healthy. He began showing symptoms in April 2007, diagnosed in August 2007, passed aways in April 2008 He was 72.
 

brooksea

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To add to Ann's post-

My husband was diagnosed 09/06, he is 49 now and still walking, talking (very slurred) and breathing with BiPAP at night. Arms and hands not so good.
 

TRLESH

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Thank you for your reply all, and don't worry CJ, we are just getting on board with the GP because my mom had to completely change her medical provider when she moved here to live with me. We are working our way back to a neurologist. It was tough to find even an internist that was taking new patients, whose office was within 10 miles, and took Blue Cross. As it is he works out of three different offices each day and the average wait time I've been told is 1-2 hours. Our first visit was last week and we got to see the doctor within 5 mins of our appointment time. I'm not sure, but I think his close association with ALS might have gotten us seen sooner. He was rather chatty about it and we were in there for almost two hours. I felt bad for the other patients waiting to see him.

Anyway, I read posts here some nights for hours on end and then I have to stop because I get really depressed and don't come back for weeks. The information here is SO helpful and informative and everyone is extremely supportive. The biggest drawback at this time, considering that my mom hasn't even begun to experience the full life debilitating characteristics of ALS, is I keep thinking about how much we have in front of us. We are just at the tip of the iceberg and from what I've read here it is going to get a lot worse.

I was shocked at my mom's reaction to her new doctor's open discussion about "quality of life" issues. While I disagree with him that it is not something we need to decide on now by any means, she really seemed taken back by the frank discussion of what was going to eventually happen to her. I had to ask her how much she knew about her disease when we got in the car. Seems she didn't get much farther than its incurable and someday will be the cause of the end of her life. I told her "that pretty much sums up life in general". How can you receive a diag and not want to know what to expect?
 

BethU

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I was shocked at my mom's reaction to her new doctor's open discussion about "quality of life" issues. she really seemed taken back by the frank discussion of what was going to eventually happen to her. I had to ask her how much she knew about her disease when we got in the car. Seems she didn't get much farther than its incurable and someday will be the cause of the end of her life. I told her "that pretty much sums up life in general". How can you receive a diag and not want to know what to expect?

That was my reaction to the diagnosis, too. I spent the year before diagnosed reading everything I could about every other disease it could possibly be ... but when I got the diagnosed of ALS, I shut down. In fact, I still haven't read any of the materials the doctors and various organizations have given me. My husband is the same way ... I gave him the caregivers manual, and he only read a little bit, and said he couldn't stand to read it.

This forum is helping me slowly to accept what's going to happen, but I have avoided support groups because I don't want to see people more advanced than I am. I still have in my mind that somehow something will intervene between now and my inevitable future.

Let your mom process all this in her own time and her own way. She's received a huge amount of distressing information already ... that she's got a terminal illness. When she's ready to know more details, she'll seek them out.

Hang in there,
BethU
 
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TRLESH

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Beth,

Thank you for your keen insight. I never brought it up before to her because I assumed she knew already and I wasn't going to press the issue. When friends brought up the idea of us joining a support group I couldn't imagine how she'd feel sitting with people, as you put it, more advanced. As a soon to be caregiver I couldn't get enough information. I felt it was my duty to learn as much as I could so I could be more helpful through all her stages. Well, I'm glad I haven't pushed the issue then and if she decides to continue on without knowing anything until it starts to happen, then so be it. That's what I'm here for.
 

Marjorie R. Wilcox

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What will or won't happen

I am a CALS for my husband, a PALS. He has been diagnosed with a motor neuron disease (fall of 2007). He had a blood test and an EMG that showed up some adverse results. He staggers, has a Bi-pap at night, has congestion in the morning, has wasting calve muscles, has one pointer finger that is no longer usable, and has rythmic twitches and involuntary movements in his big toes. He also has "glitches" in his memory. We are told it is likely ALS, with slow progression. I say all that to say this..... I guess we are not realizing that he will continue to decline. He is driving, and working, and doing, and going places. People don't see that he isn't well.... most times. We have studied up on what to expect, but it doesn't really sink in. We think we are ready, but is anyone really ready? So, we live each day making good memories and enjoy all that he can do. It is good to know we have this forum to share things, and to support each other. Bless you. M
 

BethU

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I felt it was my duty to learn as much as I could so I could be more helpful through all her stages. Well, I'm glad I haven't pushed the issue then and if she decides to continue on without knowing anything until it starts to happen, then so be it. That's what I'm here for.

She is blessed to have you there to support her ... and to help plan for the future, which has to be done. It's been 3 months since my diagnosed, and I am finally peeking toward my future needs and admitting that I need to do some planning. You are giving her exactly the support and sensitivity she needs!

Marjorie .. making memories and enjoying each day to the fullest is what makes life worth living! With or without ALS!

Hang on,
BethU
 
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Mentoring resources

For Tracy & Beth, my name is Wayne and I am a volunteer caregiver most recently having worked with two ALS clients & their families. I would like to ask a question, and will try and do so with as much sensitivity as possible, as while I do understand what clients and their families experience, it's not something I must face personally.

I have begun working with the ALS Society here in my home province and have learned a great deal about ALS from the two wonderful families I have worked with, but the thing that sticks in my mind has to do with a service I would like to help better establish, at least locally.

MY QUESTION
If shortly after the ALS diagnosis was received, the individual afflicted was notified of someone available (in person), attached to the ALS Society strictly as a 'Caring Friend', who would:
- introduce themselves to you as just that, a new friend,
- would be someone to have tea or coffee with once a month (or however often was comfortable),
- had knowledge of ALS and answers to some of the many questions on one's mind,
- would sit down with relatives and friends to tell them about ALS and what roles they might play that would be most helpful,
- and in effect be an on-going general liaison regards resources, both physical & emotional, and lastly
- be someone that was there for those moments when for THE CLIENT needed to 'smack the world' (foam rubber bats are best for us volunteers :-D) or unload feelings as needed, to someone other than a day to day caregiver !

I could talk a lot more about all of this, but don't want to intrude on what I know are very personal stuggles - it's just that I have come to know what many of these challenges are and my only goal is to be the most effective volunteer and friend I can be, particularly within the ALS community.

Thank you for reading this, and if either of you or any others would prefer to reply personally, I would welcome your thoughts (including other agencies perhaps already providing such services so I can learn from them) to [email protected] .

NOW, since we all know a good laugh can be as good as an 'apple a day', here ya go:
* * * * * * *

THE BOTTLE OF WINE

For all of us who are married, were married, wish
we were married, or wish we weren't married, this
is something to smile about the next time you see a
bottle of wine:

Sally was driving home from one of her business
trips in Northern Arizona when she saw an elderly
Navajo woman walking on the side of the road.

As the trip was a long and quiet one, she stopped
the car and asked the Navajo woman if she would like
a ride.

With a silent nod of thanks, the woman got into
the car.

Resuming the journey, Sally tried in vain to make
a bit of small talk with the Navajo woman. The old
woman just sat silently, looking intently at
everything she saw, studying every little detail,
until she noticed a brown bag on the seat next to
Sally.

'What in bag?' asked the old woman.

Sally looked down at the brown bag and said, 'It's
a bottle of wine. I got it for my husband.'

The Navajo woman was silent for another moment or
two.

Then speaking with the quiet wisdom of an elder,
she said:

'Good trade......'
 

BethU

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Hi, Wayne ...

A friend such as that would be invaluable, but for me personally, I wouldn't want someone to arrive too soon. When I get bad news, I'm like a cat in an earthquake ... I'll come out from under the bed when I'm good and ready and not a minute before.

I was visited recently by a social worker from my health insurance company who said, "What you really need is a patient advocate, and unfortunately, we don't offer that." That is a service I would really appreciate ... someone who could make phone calls, help with all the paperwork, figure out long-term care options, figure out living wills, deal with all the logistics. It feels sometimes that having ALS is a full-time job! (And not just because I spend so much time goofing off online when I should be working!:))

Because I have bulbar onset, my main problem is communication with strangers who are not online. So someone who could help with those logistics would be great.

BethU
 
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Murphy the CAT !

I heard 'everything' you said Beth, and particularly about the lack of patience & understanding from the outside world that knows little about ALS and the things sufferers need the most.
There aren't a lot of tall rooftops for me to shout from where I now live (left all those behind in British Columbia) but I am going to be participating in/speaking at an upcoming conference for the four Canadian Atlantic Provinces (Newfoundland, Prince Edward Island, New Brunswick & Nova Scotia) and one of the things I would like to focus on is helping sufferers maintain their communication skills & develop new ones (learning to type for instance), be it with their families, caregivers or the outside world - that's the type of volunteer I would like to see working within the ALS community as a Caring Friend.
AND, at the same time, be a new friend who could listen to some of the things a sufferer might want to say/talk about, but not with family members.
Everything that has happened recently surrounding my involvement with ALS has happened in a very short period of time, and so I'm trying to decide how to proceed effectively, while being mindful some folks are still 'under the bed' and I need to respect that - by the way, my cat's name is Murphy and you NEVER want to tell her when her next appointment is with the vet :-D
You have the very best evening you can and know there is someone thinking about you !
Wayne
 

brendapals

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Oh my dear Beth,

U are so right about ALS being a full time job! I told my hubby I should be able to run for mayor of our town after today. I went around to several independent businesses in town and passed out info about the upcoming ALS walk, and other general info on ALS.

First of all, many people cried ( not me, this time), couldn't believe I was walking and talking and driving and drinking my diet coke....So I got a lot of hugs! Then I had a couple of people ask if ALS was legionares (sp?) disease, leukemia or cancer and could I have chemo for it!

Definitely a day for me to educate the general public, which is my life long goal- increase ALS awareness. But it would be so nice to have someone do the running for me, make the phone calls, pay the bills, clean the house, help the teenagers with homework, take the 7 yr old to football, help the 7 yr old with home work, wash the clothes, go to the grocery, cook the meals, plan the dentist appts...oops, I forgot, my hubby is now retired! Time for him to take over some of my "momdom" hahahaha


enjoy the funnies!
Keep the faith,
brenda
 

BethU

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Brenda ... I can't believe you are doing all that and the house and mom-hood ! Bless you for doing the outreach. Had a home health care nurse come by yesterday (for my hubby) ... supposedly an RN ... and she did not know what ALS was. Or Lou Gehrig's Disease! I guess she missed that day in nursing school.

But, one person at a time, the word will get out. ... thanks to people like you!

(Glad I'm not the only Diet Coke fiend around)
BethU
 

brendapals

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Thanks Beth,

I forgot to let you know I am also starting my last semester of college tomorrow. I just printed out the syllabus and I think it was 37 pages! Hopefully, it will be a quick, painless semester and around Dec 10th, I will have my bachelors degree in nursing!

A nurse I work with asked me last week why I was even bothering with this last semester, seeing as how I'm gonna die and everything, you gotta know my smart mouth- I told her someone may just have a cure for ALS in 6 months or so and I need to have my 4 yr degree so I can be her boss!

Yeah, you're right, many nurses missed the lecture on ALS, I suppose I am one of the few that know because of my brother.

And now I read in an email that diet coke could be the culprit of many diseases! I'm going to keep drinking them I'm sure, what can they do, give me ALS?

Keep the faith!
brenda
 
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