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!

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. 

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.

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. 

Persistence Pays

Persistence pays off when it comes to Aphasia Therapy.  I know that sounds like such a cliche, but the fact is true. 

Tonight, I spoke to a woman who had bought Communication Partner's Level 1 DVDs for her son.  She called to order the Level 2 programs.  Her son has been watching the video programs everyday for the last 3 months and has seen some real progress in his aphasia recovery. 

Quite frankly, I would have a hard time watching those DVDs everyday and I created them.  Therapy is hard work and requires persistence and perserverance.  This man has seen benefits slowly over the course of time by doing simple (perhaps boring) tasks on a daily basis.

If you or a loved one are trying to recover from Aphasia, be persistent.  Progress takes time.  If you can encourage someone with aphasia, do it.  Therapy is tough.  Encouragement always helps. 

For more information on Communication Partner's DVDs, go to http://www.communicationpartner.com/.  These programs have helped people all over the world. 

How long does Recovery Take?

Last Friday I spoke at a Stroke Survivor's Club meeting. I spoke about aphasia and other speech therapy related topics.

The talk went well and at the end I opened the floor for questions. One of my first questions was from a lady (sitting next to her daughter) who had suffered a stroke 1.5 years ago.

Her question was, "How long does it take to fully recover from a stroke?". I looked at her and her daughter and said you both know the answer. I am sure you have heard it before.

The answer is - Recovery time is different for each individual.

No one and I mean no one can tell you how long recovery will take and to what extent full recovery can be achieved. The second part of that sentence is really important.

I spoke to someone yesterday who told me that a doctor had told them that their mother was too far post stroke to benefit from speech therapy. I disagree.

No one knows to what extent recovery can be made and no one knows how much time is required to achieve a full recovery.

Encourage, Encourage, Encourage

I spoke to a woman today that is married to a man with Aphasia. She had purchased a set of my aphasia therapy dvd's and wanted to return the dvd's. I have a money back guarantee so I didn't even ask why she was returning, but she volunteered the information.

She said her husband would not watch the video programs. I asked, "Did he not like them?". "No", she said, "he just wouldn't watch them.". It turns out that the husband refused to watch the programs. He had not even watched a minute of one of the dvd's.

We sometimes forget that nobody enjoys doing something they are not good at. Do you like to experience frustrations and failures on a daily basis?

Therapy is not much fun for people with Aphasia. Therapy is hard work and progress comes very slowly. Therapy is small victories in the midst of countless challenges.

If you have a loved one with Aphasia, encourage them daily. Find concrete, noticeable things to complement. Make your encouraging words meaningful. Do everything you can to help them stay motivated to keep making progress.

I encourage you to be an encourager.

www.communicationpartner.com

June is National Aphasia Awareness Month

June is National Aphasia Awareness Month. The National Aphasia Association has designated June as a time to highlight this language disorder faced by approximately 1 million Americans.

If you have found this article, you are probably very aware of the affects of Aphasia and do not need anyone to highlight this language disorder.

I work with Aphasic persons everyday. I know firsthand that Aphasia affects the communication and not the intellect of the person suffering from Aphasia.

Please help me this month to inform the American public of what Aphasia is and is not.

Please tell people that Aphasia affects about 1 million Americans. Anyone can experience aphasia. Aphasia cannot be prevented. Currently, there is no 'cure' for Aphasia. Speech therapy can help, but the therapy does not guarantee a cure.

Most importantly, tell the public that persons suffering from Aphasia are Okay. Please tell people to allow a little more time to speak to persons with Aphasia.

Ask people to talk to Aphasic persons as much as they can. If this would happen, June would be a happier month for everyone. Happy June!

Kimberly Robbins, MS CCC-SLP,
http://www.communicationpartner.com/