Status
Not open for further replies.

shh

New member
Joined
May 2, 2007
Messages
4
Reason
Loved one DX
Country
US
State
virginia
City
dry fork
I have recently joined this forum and I am grateful for the postings that I have read. My mother was diagnosed at Christmas. She refuses to go the an ALS center or a MS center to hear about what to expect. Instead she is going to an alternative medicine doctor who is taking her money and giving her iv's of "super imuno" vitamins and most recently, she had an iv port put in so the doctor could give her phospholipid therapy. She gets worse every day.

She cannot walk at all. Her leg strength is gone and she has no strength in her back either. Her right arm is becoming useless and her voice is raspy. After she eats she says her esophagus hurts for a long time. Still, I cannot get her to a regular doctor to hear about the technology available to her or so she can hear about what is going to happen to her so she can be prepared. My father is taking care of her at present because she doesn't want anyone else to help.

Would any of you give me some kind of picture of the future for her? I know that everyone progresses at a different rate and some people have different issues in dealing with the disease, but I would appreciate any glimpses into the future I can get.


shh
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
This is an awful situation for you to be in. I wonder if your Dad is your best source of help...Chances are she might have progressed to the point she is at anyway but the real sadness is that she's wasting money on a cure that does not yet exist. And this individual is taking your parents money when they might need it for wheelchairs and so forth!

Please try to get your dad to read some of the past posts on alternative "Cures" plus some of the posts on what to expect regarding the future. He might also like to review what others have to say about your local ALS clinic.

You can find a thread on any topic by using the search function at the top of this screen. And you can send private messages to any member by clicking on his or her name. good luck and let us know how things work out! Cindy
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I agree with Cindy! That truly is a horrible situation to be in!

Try to find a way to get her to an ALS clinic - they can do more than just tell you what is coming. They can be a real source of support, and information for things and equipment you will be needing. Do you have an ALS support group in your area? They can sometimes provide more information on sources for support than the professional institutions can.

My thoughts and prayers are with you!
 

shh

New member
Joined
May 2, 2007
Messages
4
Reason
Loved one DX
Country
US
State
virginia
City
dry fork
Thank you both for your kind words. My parents live in a rural area. The closest facility that deals with ALS patients is the MS clinic which is an hour away. I have tried to get them to go there, but they believe this would be admitting defeat.

I will check the other posts to find out what is to come.


shh
 

alspatient

Member
Joined
May 6, 2007
Messages
21
Reason
PALS
Country
IN
State
Tamilnadu
City
chennai
My doctor told me that there is no medicines available for ALS. He advised me against going to the US for any treatment because that money could be better used for something else.
There were two things that he advised me against. That I should not take any medication that contains metal suppliments. His reasoning was that the body is unable to get rid of the metals. The other thing was that I avoid wheat products because of wheat glutamate. So phospholipid may contain heavy doses of phospherous. That may cause more harm than good.

The disese sucks. It is bad. You should be prepared for worse times. Except in rare cases the disease progressively gets worse. I may sound like a bad guy but that is the plain truth. I tell people who tell me about alternate medicens and the cases of "recorded cures," that if someone were to be successful in curing me, then that person would get the Nobel Prize for medicine. ALS is a terminal disease and it will take different time for different people.
I have had ALS since 1998. Ask me what it is like and I would be glad to tell you about my experiences.
 

shh

New member
Joined
May 2, 2007
Messages
4
Reason
Loved one DX
Country
US
State
virginia
City
dry fork
I would very much like you to tell me of your experiences, alspatient.

While my Mother was only diagnosed at Christmas, I believe her symptoms were there years ago. She would fall down while working in the garden, she would feel as though she had a "catch" in her leg when she would rise from a seated positions sometimes, etc. Now she is totally wheelchair bound and has very little arm strength. She cannot turn over in bed at night. If you know some device that might help her with that, please tell me. I have also heard that a bidet might be helpful in the bathroom.


shh
 

nspoc

Distinguished member
Joined
Mar 24, 2007
Messages
113
Reason
CALS
Country
US
State
Illinois
City
Olympia Fields
Hi Shh -

About turning over in bed - I do not know of a specific turning device - but there are mattresses that inflate and periodically deflate that help with immobile patients. You need a prescription to have them paid for by insurance or Medicare. I think they increase comfort, as well as help prevent bedsores.

The PALS in my care does not have one of those mattresses, and she has been unable to turn for over 2 years. We have a "bed cane" attached to the side of her bed for her to grab. She sleeps on a bed pad with handles (available through posey.com) that I use to pull and turn her. The important part for her is putting a thin pillow between her knees, and bending her legs at a comfortable angle. I turn her about 4 or 5 times a night.

I know this sounds like a lot - but I can do it pretty fast, And I luckily fall asleep quickly.

The big picture is that you are going to need a lot of help and support. Your mother sounds depressed and needs help for that. Even her family physician can offer her effective medication for anxiety and depression.

One important point - the only medication approved for ALS (Rilutek) has been shown in a few studies to be effective for treating even resistant depression. This makes getting her into an MDA system of the ALS Association system very important.

Good luck to you - and keep posting - hope you find as much support and as many good ideas on this forum as I have found. Beth
 

Tonya

Member
Joined
Apr 5, 2007
Messages
14
Reason
Loved one DX
Country
US
State
texas
City
carthage
Hi Shh

I know exactly how you feel, My father was diagnosed in Sept. and then when the regular doctors said thier wasn't alot they could do for him he started seeing the "QUACK" he has all the ivs with the miracle cure.....It took Daddy awhile to figure out it wasn't working. But not until he had spent atleast nine thousand dollars. It was costing him any where from 350 to 500 dollars per visit, and they were two to three a week. But he told me that when your going to die you will take any chance or glimmer of hope they can get. But i think people who give you false hope and only does it to take advantage of someone's situtaion is some sorry folks.What comes around goes around i think.... You and your family are in my thoughts and prayers...

Tonya
 

vmd

Senior member
Joined
Apr 27, 2007
Messages
581
Reason
Other
Country
US
State
idaho
City
N/A
I wasn't aware that eating wheat products was harmful to an ALS patient. Has this been shown to be true in research studies? Also, does anyone know whether engaging in hard exercise accelerates the progression of ALS?
 

beaner1

Active member
Joined
May 8, 2007
Messages
58
Reason
CALS
Country
CA
State
Alberta
City
Redcliff
New to this forum too!

I just want to say hello to every one. I have been reading posts for awhile, but signed up today.

I have so many questions, and not very many answers! My husband was diagnosed 1 1/2 yrs ago, and it took 1 1/2 yrs for the drs to figure out what was wrong. He's 46 yrs old, was a firefighter, very active in sports and life in general. He's not taking the diagnosis well at all (as if one could!), and has been depressed ever since. My husband doesn't want anything to do with drs, aids, etc. - won't go to the ALS clinic. In his defense, the clinic is a 3 hr drive from our home, and the trip is so difficult for him. Our family dr has visited the house (bless her soul - she is so caring!), and tries to help as best as she can, but has limited knowledge of the disease.

I'm hoping for help on coping with his disease, I have questions on the progression, symptoms - I could go on and on.

I know there are different kinds of ALS (?) - my husband's started with his foot - moved to dropped foot, left leg weakness, and has progressed to just barely getting around with a walker. He is using a Bipap machine at night, is losing the use of his hands, has trouble clearing mucus/coughing - in general is failing bit by bit.

What can I do to help him, what do I need to watch for - any advice would sure be appreciated. My kids and I need to know what we can do, look for, etc.

Thanks in advance.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Beaner and welcome. Sorry to hear about what your brave little family is going through. This board is run by folks from Canada so you'll find a lot of good info about what services are available up North. Too bad you guys are so far from the clinic. Will they send you printed information like handbooks and such? If the trip were three hours round-trip I'd suggest you attend a support session on your own, just to arm yourself with information. But if you are talking about 3 hours each way, whew! regards, Cindy
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Beaner

I am sorry to hear the situation you are in. I am not familiar with how the ALS Association in Canada works, but in our state a rep from the association came to our house. She was an RN and provided valuable information on practical living issues. She also gave us numerous written materials that describe just about anything you could want to know about the disease.

My husband is 48, always fit and very active...sports...etc...It is very hard for one to go from doing those kind of things to just not. I know your husband must be very angry that he's been afflicted with this. I do hope someone from the association can visit with you and provide you with some guidance.

You may have to take the bull by the horns so to speak and find out as much as you can on your own. My husband was not overly anxious to know the details of what may lie ahead for him.

CJ
 

beaner1

Active member
Joined
May 8, 2007
Messages
58
Reason
CALS
Country
CA
State
Alberta
City
Redcliff
Thanks everyone. The trip is 3 hrs each way - way too much for him to handle. I will contact the clinic to see if I can just go myself, or something - it's hard to get away. The difficult part is that he wants no one to tell him anything, nor do anything. It's almost like he's in denial or is just waiting for the inevitable. He is getting so bad that I'm scared to leave him alone - thank God for my kids! They do so much for their Dad. I couldn't work without them helping out, and I have to work - bills still have to be paid.
Beaner
 

shh

New member
Joined
May 2, 2007
Messages
4
Reason
Loved one DX
Country
US
State
virginia
City
dry fork
Thank you all for your kind words. Beaner, your husband's symptoms and progression sound just like my Mother's. It is so difficult to get anyone to do anything that he/she doesn't want to do. I am not facing this disease so I cannot imagine what my Mom is going through, but she was always such a practical person so it is so hard to see her lose all grip on what is really happening.

I appreciate your thoughts and prayers and am so happy to have people to talk to about this situation.


shh
 
Status
Not open for further replies.
Top