June, 2016, Aphasia Awareness Month
What are the everyday struggles of persons with Aphasia and their caregivers? Many people don’t know. We have collected some of the emails we receive from patients and caregivers who have agreed to share their stories with all of us in the hope that this will help increase awareness about this challenging and isolating disorder.
The doctors didn’t know much about Aphasia
I am 60 years old and I live in West Virginia. My wife is 59 and we believe, from what the doctors have told us that she might have aphasia.
This started about 2005, she started reversing words. For example, instead of saying cherry pie, she would say perry chie, or pud muddle instead of mud puddle. We thought that was probably all the stress that both of us were going through at the time. For a while things kind of settled down and she seemed not to be getting any worse, just a few mishaps now and then. Then about the end of 2010 or the start of 2011 the manager was changed at her employment. This person was very overbearing. The added stress started her speech problems all over again only this time it started affecting her speaking, understanding, putting words together, and all around communication. Over the last 3 – 3.5 years she has been through many doctors – from our family doctor to neurologists and speech therapist from two different hospitals. All together about 14 or 15 different professionals and no one has helped. A student speech therapist told us that she might have aphasia. We have told that to everyone but no one seems to know what to do. She has had 2 MRI’s, which they say show nothing. One neuro-psychologist told us that she had become retarded. We need help!!!
NAA: Do you know about our free online database with Aphasia therapy centers and support groups?
My husband can’t renew his driver’s license
My husband had a stroke in April, 2014. He has aphasia and apraxia. His motor skills are great, thanks to the fact that they removed the clot the day of the stroke. He had been driving after the first 6 months following his stroke. But in January, he came up for renewal of his license. He has been unable to pass the written test. They have been giving him extensions but I don’t know for how long. Both his primary care doctor and his neurologist wrote that he should be just fine driving, but probably can’t pass the written test, so he should be drive-tested. At the DMV, they insist on the written test. He is frustrated and angry (although generally very mellow and accepting of his limitation!)
Do you have experience of others in the same situation and any recommendations?
NAA: If you have been through a similar situation and have tips, please send them to email@example.com
I want to help someone struggling with Primary Progressive Aphasia (PPA)
I have been taking care of a 75 year old female who has PPA. Her speech is completely gone, in this I mean it is just gibberish. With the exception of the odd word like “Hello”, “Yes”, and “No”.
I think the most frustrating part is that she understands everything people are saying to her, yet we don’t understand her, unless we watch and pay attention to body language and facial expressions.
My question is – is there anything that could help her, to make life a little easier?
NAA: Find out more about understanding, managing, and diagnosing PPA here
A Thank You note
Thank you for all the information you provide. I have never seen a disorder so misunderstood.
Aphasia therapy in Spanish
I have found excellent, intensive aphasia programs in the US but none in the Spanish language.
NAA: If you are an Affiliate registered with aphasia.org free database, please make sure to indicate on your site if you offer therapy in other languages besides English
Many people who provide services are not familiar with Aphasia
Our organization has just received a frustrated email from a prospective client who reports being 66 years old with Aphasia. They are seeking assistance with housing and though they are not homeless or even at risk, our organization can assist with providing resources on affordable options for this individual. They report having an easier time via email rather than phone. Not being very familiar with Aphasia, I looked up some information and found your site. Do you know of any advocates or specific resources for clients with Aphasia in our area? I want to make sure whatever services I offer are in line with the clients’ needs and do not want to leave any stone unturned.
NAA: Thank you to all those people who go the extra step and try to learn more about Aphasia when they meet a client with this condition. Find information and resources on our website and search our database for aphasia centers near you.
Patients with Aphasia need all the support they can get
I had stroke in 2012. My sons help me so much. Even my firstborn come to see me with his wife and my mother came two days after. All of them help me out. My directors, actors, producers, etc came to me when I was in hospital. I couldn’t talk to them but I knew them well, I cried so much. I finish a film I was in and soon you will see it. I still do things in Film and TV but I work behind the scenes now. Now sometimes I work in front.
Survivors are just that…WE ARE SURVIVORS…
I will come to classes, anything that I can do. Great to know you are behind all of us who still keep going!!
Lack of adequate medical help with Primary Progressive Aphasia
We have researched PPA and the clinical trials that are available throughout the country. We continue to have difficulty finding a physician who is more educated about it and does research with PPA.
Aphasia affects young people too
In December of 2012, my 35 year old beautiful, healthy daughter had a massive stroke, a result of a small bleed in her carotid artery. The stent to correct this bleed resulted in a massive left frontal lobe stroke. She almost didn’t make it through. But she did.
She has been home since December of 2013. Thankfully, we have a speech lab here, a non profit therapy group which has helped many with stroke complications. She has had extensive therapy. She has improved a lot and we know she will continue to improve. She has Aphasia and through the speech lab and dedicated therapists she is relearning how to sound out letters and put them into words. It is very slow but she makes progress.
It is very sad to see someone who understands clearly, knows what they want to say, and not be able to get the words out. But she is better and we are very hopeful that the improvement will continue.
She is a single parent of three children under 10. This will be an experience to mold them throughout their lives. We don’t know what the future holds but we know who holds the future, and we are very hopeful.
Tell others. Help us raise awareness about Aphasia!
Sign up for the Aphasia Challenge