Talk about something you love

My post today is quite simple, but can be very impactful. 

Admittedly, it may be difficult to talk to a person suffering from Aphasia.  Sometimes finding something to even talk about is a struggle.  As a caregiver and supporter, find a topic that the aphasic individual loves (or loved).  Talk about that topic. 

This may or may not be easy for you.  I said it was simple, not easy.  You will most likely ask a lot of questions and struggle to listen. 

We all love to talk about what excites us or what brings us joy.  Encourage those individuals that you support to talk about what they love.  Then, listen. 

Use Your Resources

In my last post, I talked about Medicare limits and how therapy is often forced to end way to early.  This is often true of private insurances too.  Right now, I  am treating a young 22 year old college student who has a severe brain injury.  He honestly could use 8-12 months of speech therapy, but unfortunately his insurance has limited him to only 18 visits.  Not 18 weeks, visits.  That equals to 6 weeks at 3 times a week.   Not fair.  I urge you to become familiar with your insurance benefits before you need them.  How much will they pay for inpatient rehab stay if needed?  How about outpatient?  Home health? 

So, what to do if this happens to you or your loved one?  Look at all your options and resources.  If you live in or near a larger city with a University or College, they may have a Speech Pathology Program (Graduate or Undergraduate) there.  This is useful b/c the students have to have so many therapy hours to graduate and so many times they have their own clinics for therapy.  These clinics are a fraction of the cost of private pay therapy, yet still good therapy b/c although they are students, they have a clinical supervisor critiquing them.  There are also many times group therapies as well as individual sessions.  Another resource is support groups.  These are great not just for the spouse, child, mother, father of the individual with aphasia, but also for the individual himself.  Use this as a therapy time, attempting to communicate to others using gestures, writing, and words.  Figure out which communication mode works best.  Last, check out home therapy products.  I personally recommend Communication Partner DVD's (being the creator) which is actually a "therapy at home" resource.  Sit back in your recliner and participate along with the DVDs which provide countless hours of therapy sessions.  (Visit the site at www.communicationpartner.com).  There are also great apps, such as Tactus which provide help with getting your words out, understanding language, reading and spelling.  Also, check out Lingraphica's apps, which are great for communicating needs and basic thoughts.  Don't be afraid to Google  "Aphasia resources" and see what comes up. 

Don't give up hope just because your insurance has run out.  Continue the journey to recovery.

Medicare Caps

Medicare Caps have been a hot topic since October of last year.  If you or your loved one has suffered any type of illness or injury that required outpatient rehabilitation, then you should know about it.  Unfortunately, the news is not good.  Medicare has "capped" their payment for outpatient rehabilitation to $3700 for Occupational Therapy and $3700 for Physical and Speech Therapies combined.  What this means, is no matter how much therapy you may need, once you reach that dollar limit, your therapy is over (unless you want to pay out of pocket, of course).  This has left many, many people with no choice but to discontinue therapy because of the inability to pay.  Furthermore, many are forced to choose which discipline they need more, physical or speech therapy, since they share money.  So, is it more important to you that you be able to walk across the room or communicate your thoughts?  As ridiculous as that sounds, that is what Medicare has turned it into.   Would you rather use your Medicare money with physical therapy or speech therapy?  I work with patients all the time that have to ask themselves that question. 

My advice is that if you are in this scenario, look for other outlets once your therapy has ended.  Check out apps, computer programs, software, workbooks, therapy sessions and group sessions at local universities that have Speech Pathology programs (you can often receive therapy with students for little money out of pocket), post therapy exercise programs and support groups.  I will talk next time about specifics on those.  In the meantime, write your local senator about the Medicare Caps and how it has affected you or your loved one personally.  It certainly cannot hurt, and who knows, if we yell loud enough, we may see a change for the better one day!

Plateau? What Plateau?

I spoke to a man last week about purchasing my aphasia therapy DVD's for his wife.  He told me that they were trying everything they could think of to provide therapy for his wife within the first year.  He said that his wife's speech therapist had told them that they had a year to eighteen month window in which all recovery occurs.  After that time, recovery seems to plateau and no longer progress.

Plateau?  What Plateau?  Who is still talking about Plateaus?  I suggested that he pick up the great book by Jill Bolte Taylor - 'My Stroke of Insight'.  She was a medical research doctor at Harvard when she had her stroke.  In her book she says that it took her 7 + years to recover 'fully'.  And remember that recovering 'fully' is a very subjective term. 

For years, people have talked about the 'therapy plateau'.   Research within the past 15 years clearly debunks this once popular idea.

If you or a loved one are worried about 'your progress' and feel like you have hit the plateau.  Don't give up!  Find some encouragement. 

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.

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.

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.

Communication Tips for Caregivers of People with Aphasia

Many people ask me , "What can I do at home to help?". I am listing a few admittedly basic, but sometimes overlooked suggestions on how to communicate with your loved one.

Sometimes it is hard to remember that Aphasia does not affect a person's intellect. People suffering from Expressive Aphasia know what is going on around them. They realize that people are whispering in front of them or speaking loudly or using baby talk. They understand perfectly, they just cannot make the words come out of their mouths.

Here are a few tips:

1. Refer to the paragraph above and realize that Expressive Aphasia is a communication disorder and not a cognitive impairment. This should always dictate how you respond to your loved one.
2. Be a loving partner. You are not a therapist, so don't be their therapist. Be an encouragement. Be a supporter. Partner with them in the process.
3. At least once a day sit down and have a pleasant conversation with your loved one. Spend at least 15 minutes talking about whatever comes up. This is GREAT practice for a person with Aphasia. The more time you can converse back and forth - the better.

I have a lot more suggestions I will save for another day.

If you have any ideas or tips, please feel free to comment. The purpose of this blog is to foster interaction among readers and hopefully provide an amount of support for people with Aphasia and their caregivers.

If you need more Aphasia Therapy for Expressive Aphasia, go to my website www.communicationpartner.com. We produce aphasia therapy on DVDs that can be used independently at home or in conjunction with a speech therapist.