Aphasia Caregiver Asks for Help

I got an email from a person two days ago that said her husband had a stroke 3 years ago.  He suffers from expressive aphasia and she is his primary caregiver.  She asked if I had any suggestions for help.  She needs help.  She is absolutely worn out and doesn't see an end in sight.

I thought of all my practiced speech pathologist answers.  I listed out a few resources for her and then I thought I might ask for your help.

If you have a moment, what suggestions would you give to someone who is the primary caregiver for an aphasic individual?

My hope is that your comments may help her and anyone else who may read them.

Thank you!

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. 

Aphasia Awareness Broadcast

The National Aphasia Association (NAA) just announced notified that NAA Board Member, Peter Turkeltaub, M.D., Ph.D. and Advisory Council Member, Audrey Holland, Ph.D., will be featured on The Diane Rehm Show on Thursday, September 26th at 10:00am EST.  Drs. Turkeltaub and Holland will be discussing aphasia research and spreading awareness across the airwaves!  Listen live through the website (http://thedianerehmshow.org/) or on your radio if you live in the Washington area on WAMU 88.5.

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!

How long will this last?

I can't tell you how many times I have had loved ones ask me the question "How long will this last?" or "How long until he is back to normal?".  Unfortunately, there is not a simple answer.  "This" being aphasia, is not a virus or a bacteria that can be treated and just goes away one day.   I wish it were that easy.  Recovery is often a slow, long process and becoming "normal" again may or may not happen.  Each person is different and each recovery is different.   

Recovery is influenced by many factors including the age of the individual, motivation, family support, and the amount of therapy received (often dictated by insurance).   That is not to say, if the individual has all these things going for him that he will be back to normal in no time.  It just means the prognosis is better for recovery.  Obviously, if the individual is not motivated and doesn't want to participate in therapy, then his progress will be limited. 

Recovery may take a few weeks, months or years;  just don't give up hope.

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.

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.

Engage, Challenge, and Have Fun

Helping someone with Aphasia can be tiresome.  Recovery is hard work.  Some days are better than others. 

During the recovery process, it is important to continue to challenge your stroke survivor.  I have a couple of ideas that might be fun and will require time spent together (or in a group, maybe). 

Find a topic (hobby) that your Aphasic person likes.  Try to craft a word naming game around that topic while working on something together.

For example, if your loved one likes to cook,  cook something together.  While preparing the meal, choose an ingredient - like pasta.  Put together a list of food dishes that contain pasta - ie. spaghetti, lasagna, manicotti.   Or list the different types of pasta - ie. vermicelli, penne, spaghetti.  You don't need to write anything down.  Keep it casual.  Have fun with it. 

If your loved one likes cars, go for a drive together.  While driving choose a manufacturer - like Ford.  Try to name all the Ford models you can see - ie. Taurus, Explorer, F-150 (that is a mouthful).  Again, keep it casual and have fun. 

You can make bets with each other on who can name the most.  The point is to engage with one another and challenge the aphasic while having fun.  If you can do that, you will really be doing something. 

Don't Park an Aphasic Person in front of the TV 24/7

I spoke with a person yesterday who wanted to purchase my Aphasia Therapy DVDs.  She told me it was for a family member because that person's caregiver parked the person with Aphasia in front of the television all day - everyday.  They didn't know what else to do. 

When you run out of insurance benefits, options for Aphasia therapy get harder to find.   You can go to my website http://www.communicationpartner.com/ and find DVDs that help with lower level expressive aphasia.  (Pardon the shameful plug for my therapy).  But, other options can get expensive. 

If you want to try something 'unscientific' and less expensive, I suggest going to your local Knowledge Tree and purchasing some resources.  Knowledge Tree is a store filled with resources for school age children.  If you have a little imagination, you can find some inexpensive items in the store that might help be of help for someone with aphasia.  Of course, you will have to do some work with the aphasic individual. 

But, please do not sit a person recovering from Aphasia in front of the television all day.  That stroke survivor needs stimulation in the form of conversation and interaction.

Two Great Magazines for Stroke Survivors

Please forgirve me if I insult your intelligence by stating the obvious, but I want to tell you about two great magazines for Stroke Survivors. 

Stroke Smart is a great magazine published by the National Stroke Associaton.  The subscription is a free one for United States residents.  Simply go to http://www.strokesmart.org/ and click on Subscribe. 

Stroke Connection is another great magazine published by the American Heart Association and American Stroke Association.  Again, the subscription is free.  Go to http://www.strokeassociation.org/ and follow the instructions on how to Subscribe. 

Both magazines are filled with stroke survivor stories, tips for caregivers, product introductions, etc.  I find them to be very informative and helpful to stroke survivors and families.

I hope you find this helpful. 

Be Patient - Don't Frustrate the Person with Aphasia

Last week, I spoke to a woman with an adult son suffering from Aphasia.  He had a stroke about a year ago and had been living again with her and his father while continuing his recovery. 

The lady told me that her son wanted to move out because he couldn't stand to around her husband anymore.  The father frustrates the son on a daily basis by being impatient.  He won't let the son talk.  He tries (unsuccessfully, apparently) to finish the son's sentences.  The son just wants to recover.  He doesn't want therapy at home from his dad.

As a therapist, I hear similar stories more than I like.  If you want to support a person suffering from Aphasia, Let them talk.  I will repeat that, "Let them talk".  I know it sometimes takes a long time.  To be honest, sometimes it seems like it will take an eternity if you let the person finish a sentence. 

Be supportive.  Be attentive.  Learn to be a good listener.   Let them finish.  Don't frustrate them by trying to guess what they want to say.  Don't finish sentences for them.  Relax and listen.

We all want to communicate.  We all want to share and be heard.  Sometimes, the toughest thing a caregiver can do is Nothing. 

Listen more and you will be an even stronger support to your loved one with aphasia. 

Resources to Help Find a Support Group close to You

Many times help is closer than you may think.  If you are looking for an Aphasia Support Group and don't know where to find one I have a couple of suggestions.

Go to http://www.aphasia.org/aphasia_community/aphasia_community_groups.html.  This link is posted on the National Aphasia Associaton's website.  Look for your state and see if a chapter exists close to where you may live. 

Another idea is to visit http://www.stroke.org/site/PageServer?pagename=support_groups.  This link is for Stroke Support Groups which is different than an Aphasia support group.  But you may find these helpful as well. 

Local support groups are great.  I visit several in my local area throughout the year and they are great for survivors and caregivers.  Check them out.