Help

[magicgirl]

I need help I have a friend, recently diagnosed. I will be moving from my home state of Alabama to Texas to help her husband take care of her. I just need a lot of info. I was a caretaker for my Mom, who had Alzheimer's and my Dad, later. No problems there. Willing to do whatever it takes. She was diagnosed 11/2011, but based on the info I've read, seems to be rapidly declining...... Left arm/hand, can't use. Right hand, becoming steadily weak. Occasional difficulty swallowing. Seems too soon for all this..... She previously had been diagnosed with Fibromyalgia for the last 10 years or so. Could that have created a more rapid ALS decline?

She wants to go to a faith healer, John of God, in Brazil..... Anyone know anything abut him?

I will go to the ends of the earth to help my wonderful friend. I am single, no kids, no ties, free to devote everything to helping her cope with this damn death sentence.

Advice, PLEASE!

 

[magicgirl]

mE, AGAIN, I am in such distress --- is there a telephone hotline number I call and talk with someone right away?

 

[kmendsley]

Magicgirl, I am right here...going to write a big post but what can I help you with right away?

 

[kmendsley]

While you write...I was going to say that there are three threads on the forum that can help you out tremendously. One is the section you just posted in : General Discussion on ALS/MND, Tips & Gadgets, as well as CCALS or Current Caregivers of people with ALS. The first one will tell you general questions people pose...just browse through the threads...lots of good ?'s and answers there. The second tells you neat tips of how to help your pals with assistive devices and such(ie finding wheelchairs, recipes, typing assitance...etc. The last one CCALS is for you to go on to find direct support as a caregiver. All of the caregiver of people with ALS are on this thread to help each other on tough days and give advice if and when you need it.

 

[kmendsley]

BTW, no hotline that I know of...and sorry for your friend's diagnosis. Also, it make take a bit for people to reply...give it 24 hrs. Most of us that answer the ?'s on this thread use assistive devices for typing so it takes a little longer

 

[Ms. Pie]

Faith healers just relieve you of your money. Not your ailments or diseases.

 

[HelenL]

I've heard of him, and have seen his video, but if he were really legit, I think he wouldn't be in the middle of nowhere in brazil.

There is lots of info on this site, but also check out the Muscular Dystrophy Society and the ALSA (ALS Association) websites as well. Has your friend been signed up with these organizations? They'll be able to help in all things, from loaner equipment to an ALS clinic.

You're a good friend, good luck and keep on this site, it's a lifeline to us. Have your friend come on as well, it's easier to talk to people who are dealing with the same day-to-day losses that we have.

Good luck!

 

[Toto's Dorothy]

My best advice would be like others have said. Read, Read and READ some more. Make as many contacts as possible now. We were told to stay at least 2 steps ahead of the disease.

You are a wonderful person to just let everything go in your life not once, not twice but 3 times. You truly are an angel walking among us.

And just to add, holding your friends hand or wiping her tears away, may seem like something small to one person, but to us is sometimes our lifeline (?).

GOD bless you. And I will lift the 3 of you up in prayer.

 

[brooksea]

magicgirl, I'm very sorry about your friend. How very comforting it must be to both her and her husband to know that you will be moving to help them through this journey. This site has more information than you could possibly get through any "hotline." If you have a specific question, the easiest way to find the answer is to g oo gle it with alsforums in the search parameters. Otherwise just ask and we will answer as best we can.

 

[momap53]

What a wonderful friend you are! You'll find lots of support here and the answers to many of your questions.

Be sure to check out ALS Untangled for reliable information about treatments that you may hear about. A group of physicians review claims made for cures or treatments.

The Welcome page of the forums has a link to a section called "Scam Watch" This may be of interest to you as well.
Good luck with your move.

 

[vzandt]

Your friend is very lucky to have you. I come here just about every day and I learn something new every day. One day at a time. These people are a great resource.

 

[hjlindley]

AS ususal, great ideas! Make sure she gets (or you do) in with your local ALS group. If there is an ALS clinic, use it. Get disability going..we have no waiting period with formal diagosis. Take a deep breath, and, remember, her mind is still fine. So your friend is stll there..just her muscles have stopped answering the call. Our local ALS has a support group, equipment lending closet, lots of advice and a patient advocate that is worth her weight in gold.

Good luck! WE are all here for you.

 

[Miss]

Indeed, you are a good friend. Do you have any information on caregiving for someone with ALS? The MDA puts out a good "guide". It answers a number of questions.

I wish that there were some hope that a faith healer would be of service to your friend. The sad reality is that a journey to Brazil will take valuable time from your friend's life. It would be unbelievably stressful for body.

 

[pmbenb83]

Your friend is very lucky to have you. I am going to echo what everyone else has said.

Please do not waste your friend's time or money with faith healers. There was a special on a show like 60 Minutes regarding ALS patients being taken advantage of, so please beware. Not only will there be loss of money, but these people do not always have our best interest in mind and could actually speed up the progression with their herbal remedies and medications.

This forum is a wonderful wealth of knowledge from all of us who are going through and have gone through this unfortunate journey. I'm glad you found the forum for genuine help and guidance.

Good luck on your move.

 

[magicgirl]

Thanks to the many kind and helpful remarks in response to my plea requesting help with my recently diagnosed friend. Not sure I'm in the right spot to post this, I posted it somewhere else also (I think!, ha)

This is my first experience with blogging(?), forums, etc., so it will probably take me some time to figure out where I need to be posting, etc.

I will follow the links several of you suggested and, of course, READ, READ, READ! Thank Heaven I love to read, research and learn. I want to be as prepared as possible to help my friend - right now, the hardest part for me is knowing what to say to her on the phone other than "I love you and I'm here for you anytime you want to talk, etc." Seems so trivial and trite.

To all of you with ALS, my heart goes out to you. It's so hard to understand how you can mentally cope with this horror...

Thanks!