(These are reposts from my other site that I am moving to this site)
This will be a 5-part series about misconceptions or poor information that some folks have received or have given to others. I hope with these postings to help both caregivers and persons living with aphasia to get a better understanding about aphasia–knowledge is power.
For this first piece, I’d like to address the concept of the every-dreaded “plateau”.
I’m betting that almost each and every one of you were told at some point that you were no longer going to receive treatment because you had reached a “plateau” (don’t take that bet, I know I’m right!). There are a few elements that contribute to this phenomenon. The primary force is the insurance company, because the facility needs to get paid to see you. The insurance company will authorize so many visits for therapy, and then that’s it. You can fight for more visits, but your therapist must be on board with this by showing your progress in therapy. The insurance wants to make sure that your visits are 1) medically necessary and 2) that you have been showing progress and that 3) there is a reasonable belief that more therapy would show more progress. This is where it is very important for your speech therapist to present the data.
The speech therapist is the second force for therapy discharge. Your therapist may have more or less run out of ideas or ways to help you. They are bound by hospital rules, insurance rules, and ethics rules. An easy way to change the “plateau effect” is to change the goals or that way those treatments are administered, but this doesn’t often happen in these settings for a multitude of reasons.
I say that this plateau is a myth in aphasia because I have always believed and practiced therapy that is designed specifically for each individual. If I am working with you and the evidence is that we aren’t “making progress”, then I need to change my approach, because what I’m doing isn’t working. Saying that you “can’t go any further” puts the responsbility on you. Maybe I need to do more in-depth testing for a particular function (e.g., reading) that is complex, or perhaps what I thought would work doesn’t work. If I continued to try to teach you something that wasn’t working, then yes, you would “plateau”. BUT, if I change the way I do the treatment, then perhaps we can find the key to unlocking your individual processing. You may never have been a person who used his hands or face for gesturing and facial expressions before your stroke, so could we get much progress if we try to teach you to do this after your stroke? If we try it a few times and it isn’t working out so well, then we need to go to Plan B. Then Plan C. Then… you get my point. My bag of tricks expands on a daily basis.
So, the point of today’s blog is to tell you–don’t accept that you have reached a “plateau”. If you are told upon discharge “Maybe we can re-assess you in a month or so if you’ve made progress”, then ask that professional what their reasoning is for this comment. Do they really believe that if you don’t have therapy for a month that you will get better during this time so that you can come back and “make progress”? That doesn’t make any sense. If you can get better all by yourself, then why are you coming to therapy? You can continue to make progress and continue learning even years after your stroke. Don’t stop trying and get advice from as many professionals and support groups as you can.
We were told by our nuerologist at UConn that my husband does not have altzimers,and hasn’t had a stroke. He is in speech therapy now, with a few sessions left. They say he has non fluent aphasia. He has some spots on his mri on the left side. He has 3 doctors degrees, and is a minister. He was always an excellant reader an anounceator, with almost a photographic memory. Now he just can’t think of the words when speaking, and reads like a 6th grader. I want help for him so badly. He is 72 years old in excellent health and goes to the gymn every week. All of the doctors are impressed with his physical strength. We have always taken a lot of vitamins. I wish he could have stem cell treatment. I want my wonderful husband back.
Hello Clarissa — I am a Speech Pathologist in Connecticut specializing in aphasia rehabilitation, especially over the long-term. I want to let you know about several programs that may help your husband, especially as he has perhaps now run out of therapy. UCONN (Storrs) and Southern Ct. State University both have in-house low-cost clinics providing ongoing therapy for speech and language recovery. The therapy is provided by graduate students in Speech Language Pathology with supervisors who are certified Speech Language Pathologists. I happen to be one of those supervisors at Southern. Lastly, I have a practice down in Westport, The TalkSpot where I provide similar programming, also at a low-cost, despite being a private practice. I hope that you and your husband will seek out one of these programs. You can reach me at Marion@TheTalkSpotCenter.com. Good luck — Marion
Clarissa,
You understand that being affected by loving (and maybe being a caregiver of) someone struggling with aphasia is frustrating, discouraging, scary, and so simply hard. It is difficult to remember, but remind yourself whenever you can that this man is still inside there!
On the plateau topic, after my stroke a year and a half ago I am still making noticable aphasia progress. About at the six months mark, I remember feeling there is a good chance that I will just have to deal the aphasia eventually. At this point, I believe that it might take years, but I will eventually feel what I would call fully recovered.
Has your neurologist mentioned Primary Progressive Aphasia? If not, ask him/her about it.
I am a 46 year old female that was diagnosed with Primary Progressive Aphasia and Apraxia. I have a Ph.D., had a successful private practice. I’ve gone from there to not being able to get simple words out, understand t.v., and I have seizures. It seems that every thing I read on these disorders is different. I am on SSI~which is humiliating. My family has not been supportive, in fact they have been more destructive. I am not sure who to trust other than my partner and my neurologist. Has anyone else had their family just drop them into a “home” when you were pretty high functioning?
Hello. My wife has suffered 6 strokes in the last 16 days. Four strokes she had in the hospital while asleep. The doctors are thinking vasculitis. Is there a specialist in this nation that devotes his/her time to only this type of stroke? My wife is 45 years old. I am having a very difficult time finding any type of support for us. It seems that all the research monies go to cancer and heart disease research and may GOD bless them all for that but my heavens, we stroke victims need help too. Please help in any way that you can. Thank you and may GOD bless you.
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