Insurance.....May Not Be Our Friend

Unfortunately we are all strapped by insurance when it comes to our health.  Dealing with insurance can be a good experience (when they pay) but many times it can be a bad experience.  Many, many times insurance companies will decline your claim assuming (and hoping) that you will just pay it and move on.  However, a lot of times if you fight it, you can overturn it.  The problem is that it takes lots of time and energy.  Most of what has been already taken from you dealing with your loved ones stroke or other medical issues.  Who has the energy to fight insurance companies after what all you have been through?

I went to a conference this weekend given by a Speech Pathologist who fights many insurance claims for her clients.  Sometimes it takes several appeals before it is overturned, which in turn may be several months.  She told a story of how one insurance representative she spoke to continued to tell her that the speech therapy services were not covered for her patient.  But then at the END of the conversation the employee proceeded to ask her, "by the way, what exactly is aphasia?".  She was denying coverage and did not even know what she was denying!  On another occasion, another insurance rep told her that the insurance company had declined a claim because the services had to be done by a Speech Therapist and not a Speech Pathologist (they are the same thing).   Again, lack of knowledge.

I myself just went through a similar nightmare.  Even though I had maternity insurance during my pregnancy, my insurance company repeatedly denied coverage for things such as ultrasounds and doctor visits and even the birth stating that the insurance only covered routine maternity.  I had a normal, non-eventful pregnancy, so I guess they thought I would be doing all of that if I were not pregnant.  Long story short, I fought each denial and one by one, I won.  It took about 6-8 months with many, many phone calls and emails, but I won.  I got back several thousands of dollars.   I don't know which was better, the money I got back or the satisfaction of beating the bully.

I say all of this to say, don't give up.  If you think your insurance is wrong in denying your claim, fight it.  Get your doctor, therapist and whoever else you need involved.  They will decline several times.  Just expect that, but know in the end it could be worth the fight.

Thank you Nightline!

With the story of Senator Gabrielle Gifford's recovery continuing, Nightline had a special earlier this week focusing on her progression with her "speech".  I am happy to say they specifically talked about "expressive aphasia" and gave details of how it affects an individual.   I have blogged before about how rare it is to hear the word "aphasia" in the media even though it is so prevalent.  I am thankful to them for the education they provided to increase the awareness of this condition.  You can see the story in full at http://abcnews.go.com/Health/w_MindBodyNews/gabby-giffords-finding-voice-music-therapy/story?id=14903987.

Her progress is amazing!  I hope it gives great hope to others in similar situations.

Don't Forget the Caregivers

In my last blog, I talked about the different emotional sides of the people who suffer from aphasia.  While this is a very relevant topic, it is just as important to discuss the emotional sides of a caregiver.  I mentioned last time the man who had severe expressive aphasia (unable to get most of his words out) but was still very happy and positive even though he really couldn't communicate.  Well, it was a different story when I met his wife.  She came in to talk with me and she was the farthest from joyful and positive.  She was completely overwhelmed.   Here she had her husband who had supported her financially, who was extremely intelligent, but now couldn't get across the most basic thought.  Her role in life had completely changed.  Everything, and I mean everything, was now her responsibility.  She was in the process of fighting insurance companies for more visits, paying all the bills, taking care of all his appointments, taking him to all his appointments (he can't drive now), taking care of his business (he was a successful business owner), and the list goes on and on.    Who could blame her for being overwhelmed!   Then there is also the personal side of it.  She had "lost" the man she used to carry on conversations with.  Who she could converse with whenever she needed his advice or just to hear how his day was.  Now all their conversations are one-sided.  He can listen and understand everything, but is unable to respond,  unable to interact with her.   So caregivers, allow yourself to mourn.  What has happened is not fair. This has probably affected you as much as your loved one.  So as easy as it is to tell yourself to "be strong", allow yourself to mourn what has happened.  Don't be hesitant to ask others for help either.  And finally, find a support group.  You need an outlet, someone to talk to that understands your pain.  Best wishes to you all.

The Emotional Side of Aphasia

As a speech therapist, I work with individuals with aphasia almost every day I walk through the hospital door.  In therapy, I work hard on helping each one improve his/her communication skills but I also am there as an outlet for the emotional side.  As you can imagine, it is very frustrating for a person to be sitting at a table in a small room for an hour of his/her life trying to "relearn" how to talk.  When just a few weeks ago, talking was a skill never thought about.  You just did it.  I have a client now that cries almost every time we meet.  She even jokes about it at times saying "Well, I'm going to go cry now" when walking back to the therapy room; or points to me saying as she's laughing, "She's the one that makes me cry!".  She is a delightful woman and even though she jokes about the crying, it is a real part of her life.

It's amazing to me to see how drastic a difference people are in their emotional way of dealing with their loss (of words).  On one hand, you have the lady I describe above who cries frequently as she can't get some of her words out (although she is able to get her message across most of the time).   Then on the other hand, I have 2 clients who seldom are able to get a single word out, but are so joyful and positive all the time.  Yes, they do get frustrated when they can't get their messages across, but just seem to blow it off and move on never missing a beat.  So positive, so happy to just be alive.  I have to say, I don't think I would be that way if I could no longer communicate effectively.  They are truly an inspiration to me.

So there is not just one emotional side of aphasia.  Each individual handles his or her loss differently.  Help the individual deal in his/her own way.

Who has heard of "Aphasia"?

It is amazing how many phone calls I receive with people saying "I had never heard of aphasia until my husband (or wife, sister, brother, mother, etc.) was diagnosed with it".  The truth is you don't hear the word "aphasia"  in the newspaper or in the news or in everyday conversation.  This is unfortunate.  Aphasia affects approximately 1 million Americans and is more prevalent than Parkinson's Disease, Cerebral Palsy or Muscular Dystrophy. Yet, most people know about those diseases.  Why is "aphasia" so not known??  My husband showed me an article in the Fortune magazine yesterday about a very successful businessman who had a stroke.  It told how the stroke affected his right side of his body and that he couldn't get his words out anymore.  It told what a difficult time he had communicating verbally and the struggles he went through during his recovery.  But not once did the word  "aphasia" occur in the entire article.

Another example is Senator Giffords who suffered a gunshot wound to the head earlier this year.  Her horrible story was all over the news for months, following her progress step by step.  Although she had all the symptoms of aphasia described in the newspaper articles and on the news, again I never heard the mention of "aphasia". 

This is why no one has heard of aphasia.  I wish I knew why the media stays clear of the word.  It would be helpful to others if it were discussed more so people could learn about it before it affected their lives.  Keep your eyes and ears open for aphasia in the media.  I would love to hear back if anyone sees or hears of it.

Masking Your Aphasia

Aphasia affects people in different ways.  In my practice as a Speech-Language Pathologist, I have seen various severities of aphasia.  These severities range from the individual who cannot say a single word all the way to the person who can communicate his/her thoughts but may stumble on a few wording finding episodes.

I recently met a woman who had a stroke a couple of months ago and now suffers from aphasia.  From afar, she looks like she has it all together: nice looking, stylish dresser, nice family, great job, lots of friends.  She even can converse in small talk with you to where you would never know she had aphasia.  She does well to "mask" her aphasia.  How?  Well, she doesn't initiate any conversations with anyone or include herself in any group activities, and has actually removed herself from activities she previously enjoyed because she does not want anyone to see her limitations.  She knows that if you were able to sit with her and really talk with her you would see how much of a struggle it is for her to really carry on a meaningful conversation.  It is very frustrating for her.  In her mind, she doesn't want anyone to know that she no longer has it all "together".

So, is "masking" her aphasia and avoiding people and situations the right thing to do?  In my professional opinion, absolutely not.  I understand the pride thing, I really do.  However, you should not cut off your friends and stop doing things that make you happy because you are afraid of what people think.  You have to continue living your life.  Also, from a therapist's point of view, the more interactions and conversations you have with others, the more likely you are to progress in your speaking ability.  I know this is easier to say than do, but I definitely believe that the quality of life is more important than the quantity.

What is Expressive Aphasia?

I spoke with a man last week that had called me to talk about my speech therapy programs for stroke survivors.  He told me that he was buying the dvds for a friend who had a stroke about 2 years ago.  So, I asked him to describe his friend. 

He said, "I don't think he has Aphasia...He is totally with it.  He just got his driver's license two weeks ago...  He can walk and he takes care of himself... He understands everything you say to him... He just can't say more than a couple of words."
Little did he know but he had just described "expressive aphasia".  People think that since their loved one's cognition is intact then he or she is not aphasic.  It is important to remember that its not the individual's intelligence that has been affected but instead it is their language skills.  Expressive aphasia is merely demonstrated by knowing what you want to say but not being able to get the words out due to the part of the brain affected.  So is it possible for a person  to drive, take care of himself, and walk independently yet still have aphasia?  Absolutely.

Aphasia Recovery takes Time - Progress is Slow

My apologies.  I have not submitted an article since September 2010.  I had a baby in October and have been a full time mom for the last 4 months.  My time has been busy, but fun.  Now, I am back to work.

As I watch my baby develop, I am reminded of how slow progress is.  I don't notice change on a daily basis.  I realize that my baby is developing, but I cannot tell what progress is made from one day to the next.

Recovery from Aphasia is the same way.  Progress takes time. 

I think the older we get the more we forget how long it takes us as infants to develop into children and then into adults.  A stroke or brain injury robs a person of the vital, basic skills that took so long to develop.

We want the Aphasia to be gone and to be back to 'normal' quickly.  In most cases, that goal is next to impossible. 

If you or someone you know is recovering from Aphasia, please know that progress takes time and is a great deal easier with lots of love and encouragement.