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laurenac81

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Nov 8, 2010
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Friend was DX
Country
US
State
OK
City
Oklahoma City
Janet had her first appointment today. He is pretty sure that she has ALS but wants her to have an EMG done before he will actuatlly confirm the diagnosis. He said that she is showing weakness in all of her limbs, some worse than others. The doctor did mention that she does seem to have symptoms of FTD, but he can't confirm because of the lack of communication from her. I am concerned about her inability to communicate because she doesn't tell us how she is feeling or gives us wrong information. For example, the doctor asked her if she was having problems swallowing and she said no, but she is and has choked on her food multiple times. So the concern is how will we know what care she will need to be seen or treated for if she can't tell us what is going on?

They also did a respiratory test on her and came up with the number 25. I'm not sure what that number means, but I think it is below the norm because they want her to have breathing equipment.

The doctor and nurse spoke to Janet about feeding tubes and a ventilator. John will talk to her about that to see what she wants. They explained that the time frame of getting these things is time sensitive because it is a surgical procedure and she have to be given narcotics which may lower her breathing and this could be very dangerous for her. I apologize if I am not using the correct terms it was a lot of information to take in.

The nurse also mentioned having someone come in for home health care to do an assessment and provide us with feedback.

They gave us a lot of good information, but the problem is that Janet was diagnosed with ALS in August and was just approved for disability. Her disability won't start until March and her Medicare not until February because of the 5 month time frame that she had to have been diagnosed. Because she does not have medical coverage right now the doctor was gracious enough to donate the EMG for her, but they are concerned about the breathing equipment because she needs it now. John is going to go to the Social Security office with her diagnosis to see if her coverage can start earlier. I really hope so. I am concerned with an increase in her breathing issues between now and February.

They also brought in someone from the MDA who gave us some information and provided us with paperwork to get her registered. She said that there is a $500 a year equipment fund that she can use if needed. I thought that was great. I feel really good about this doctor and they all were very helpful and provided us with their names and numbers so that we can call them just in case we have any questions.

I feel much better now that she has been seen by a specialist and will begin getting the care that she needs. I know this is difficult for her and my heart breaks for her. I can't imagine what she is going through. What can you say to comfort someone who gets this news or is it best to just be there to hug them and tell them you love them?

Thank you for reading through this post. I know it is a lot of information I just had to get it out and I am hoping for possible guidance.
 
You may want to get with the MDA rep and see if they have a ventilator in their loan closet. At least the machine cost would not be a problem for her. The tubing and supplies would have to be paid for, unless the company she gets them from will provide them free due to a financial hardship on her part. For that matter, she could also get the ventilator free. Your son will have to fill out the financial papers, once he finds a company willing to work with her.

It looks like the ALSA has no representation in OK for some reason. (I couldn't find a chapter in your state.) But, you may want to contact all three of the following locations to see if any of them are willing to help in any way, as they also have loaner closets:

ALSA Springfield: [email protected] 888-386-1200

ALSA Wichita: [email protected] 800-553-9056

ALSA Rogers, AR: [email protected] 866-540-7411

As for Medicare, pALS do have to wait the 5 months. It used to be 2 years! A pALS lobbied to have the law changed, for obvious reasons.

Good luck to y'all, Laurena!
 
Another very important thing... since the doctor does suspect FTD... it is extremely important that someone go to all appointments WITH her. As you've already noticed.. she will "lie" to the doctor. Again... it's not really lying because she's not aware that that is what she's doing. The classic example: an FTD patient will continue to put food in their mouth even as they are choking. There is no connection between the two in their brain.. so, to her, she's NOT having any trouble swallowing. Please get a notebook, and start keeping a diary of "incidents".. choking, odd behavior, etc. Because she cannot communicate, you and her son will have to become her lnk to the medical community. You've been dealt a difficult hand.. there are those of us here who have walked or are walking that same road and will help as much as we can.
 
I truly appreciate the information that you all have given. I will be sure to contact those numbers for assistance. She has some money in the bank to pay for some things, but of course we have no idea how long that will last. I am curious, does anyone know if there is a certain point that it is recommended that ALS patients are put on ventilators? I know her breathing isn't where it should be, but I don't know if it is bad enough to require a ventilator. Also, I should clarify that when the nurse said she would need breathing equipment she didn't clarify what exactly that meant. In hindsight I see there are a lot of things I should have asked. I will write down my questions and give them a call.

Thanks again for all the information!

Laurena
 
The first piece of breathing equipment is always a Bipap. Start using it at night to sleep with, when it becomes necessary to use it more and more during the day it is time to think about a trache and vent. Some people use a Bipap 24/7 for years, others like me decided to go the trache and vent route and it was the best decision I have made.
 
Thank you Joel. Would you mind me asking how much the BiPap costs? When I asked the nurse she said they were very expensive and that could mean anything.
 
I really don't have any idea what they cost, sorry, we have them supplied free of charge. I did hear they are around $3000.00.
 
According to Glen's RT when he first got it.. where we are in San Jose... BiPap without insurance would run about $8,000.
 
Katie is right. That is roughly the cost of one with a humidifier on it. If you cannot get one through the ALSA, check at Amazon.com or Ebay. You might find one there.
 
Ebay is no longer selling BiPaps, last I checked, due to the manufacturers raising h#!. But you can purchase online from a number of online retailers that usually have an RT on their staff. Some are used and some are new.

As far as when breathing equipment is needed, my husband's neuro believes pALS should start on a BiPap as soon as possible, whether or not breathing is impaired.
 
Thank you for the information everyone. There are a lot of great ideas that we will definately be looking into and a lot of good information. Everyone's information is very appreciated and very useful. Thank you again!
 
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