Here is also some additional information that may be beneficial to others in his situation.
To Whom It May Concern:
Winston Lindsley, who suffered a stroke 2 years ago and now suffers from aphasia and apraxia, has become very active in an effort to assist others experiencing similar challenges. Winston has been very fortunate and has been able to participate in and utilize a diverse array of resources (therapy programs, exercises, medications, software, etc.) on his arduous road to recovery-some of which have been more beneficial than others. Winston shares any experience he gains in hope it will benefit others walking the same road.
Like Winston, many in similar circumstances have most likely learned cost and time saving shortcuts and also road blocks and obstacles to avoid-in short, anything to streamline this journey to recovery.
There are list-servs, chat rooms, and services that act almost like on-line support groups or forums where individuals can share the beneficial tidbits mentioned above. Winston is researching these resources which are currently available so he can not only share, but to also see if there might still be a void needing to be filled.
Any input or suggestions in this endeavor would be most appreciated; and remember, they may have much more far reaching effects than realized when shared with others.
Currently, Winston has produced several videos that are available as at-home speech therapy.
To receive one of these home therapy videos, please use the contact form
Along with his Speech Therapist, Karen Scoggins (of Innovative Speech Therapy based in Potomac, Maryland), Winston has produced two CDs which he is offering.
The first CD was advertised in the November/December issue of Stroke Smart Magazine. He offered this CD with a request for a $5 donation. The response has been very positive with over 150 orders by both patients and speech clinics. The feedback has been positive and he plans to follow-up with those people who have ordered it to find out how helpful it has been. The first CD contains practice exercises, e.g. automatic speech practice, common associations, out of sequence months of the year, out of sequence numbers, etc - there are a total of 10 different exercises.
The second CD, which is nearing completion, focuses on forming sounds and then putting them together with constants to form words. Winston, with a lot of effort, is now associating sounds with the correct mouth shape which is a major break-through for someone with Apraxia. He also uses a "mouth shape" chart that was prepared for him by his therapist in Ann Arbor and has been added to by Karen. He hopes to sell this CD for $30 to cover the costs of production of this CD plus the initial one. He is sending this CD to his therapy team for their feedback and hopes to offer it to others in the very near future.
This document describes the software and programs that Winston has used, and continues to use, as part of his recovery
--Winston, along with all the other participants in his first program at Ann Arbor were taking Piracetam (Nootropyl). This medication is not available in the US but can be ordered online (I can give you some information if you interested in pursuing this.)
--patients would take this three times a day--mostly before speech therapy as it helps "wake up the brain" . They all felt it was extremely helpful to them. --Dr. H. in Florida suggested that Winston stop taking this after six months which he did.
--While in Ann Arbor, Winston has been seeing various doctors who have been doing some research on drug treatments for brain damage.
--Based on some research that I, along with some other caregivers at the second session Winston attended in Ann Arbor, we found out that some promising work was being done on the use of amphetamine and stroke patients, particularly those with speech/physical problems. There was also an article in the local newspaper.
--The drug is "bromocriptine (Parlodel).
--It is primarily used for Parkinson's patients but the Rehab Institute in Chicago has been using it to "help stroke patients go further with their speech training".
-- could send you a copy of the article if you like - just send me your address.
--Based on this article and our research, we spoke to Winston's doctor at U of M and while she was aware and supporting of the work being done on "bromocriptine", she thought it better that Winston try a different drug which is in the same family (as I understand it).
--He is now taking "Dextroamphetamine" (Dexedrine) which is in short, prescribed "speed". His doctor felt that this would be the best drug for him as it works on two parts of the brain - the motor skills and speech.
--Winston was completely paralyzed as a result of his stroke but quickly regained all movement except for a slight problem with his right arm at his shoulder, he had trouble lifting it.
--Once he began taking "Dexedrine" we noticed that when he swam his arm movement greatly improved and now it is healed.
--In Winston's last visit, she also prescribed "Provigil" for Winston - this is used mostly for Narcolepsy.
--Research is being done on provigil and stroke patients; Winston's doctor thought this could also help him.
--The only issue that has arisen is that Winston's insurance company will not pay for the "Provigil" because it is considered "experimental" at the moment so it is another out of pocket expense.
--Soon after his stroke, he attended the Hammesfahr Neurological Institute in Clearwater, Florida. Dr. Hammesfahr has been working with stroke patients for some time. Winston found this program helpful.
-- It is not speech therapy but they work on increasing the blood flow to the brain - they put Winston on many different medications that, in essence, increased the blood flow to his brain.
--On his follow-up visit they found improvements in his brain activity. There is quite a bit of controversy regarding his work.
--Winston's GP and some of his doctor's at U of M think of him as a "quack" because he has not shared the results of his research with others. Winston found out about this program through one of his speech group members who hails Dr. H as a "hero" as his speech improved greatly after his participation - in fact, Gary is included in the promotional video the clinic has. I will not list all the different medications as they are geared toward the specific patient and are not generic, i.e. no two regimes are the same.
Currently, Winston receives 5 hours of structured speech therapy each week. He has two two-hour sessions with Karen Scoggins of Innovative Speech Therapy. Therapy with Karen is computer based as well as traditional. Winston finds this type of therapy very helpful for him. He also has an hour of traditional therapy with a Speech Therapist who works for the County of Fairfax, Virginia, where Winston lives. In addition, Winston has hired a student who works with him for five hours, two days a week. During these sessions, they work on sounds and other words to help broaden his verbal speech. He really enjoys this more informal therapy. He is paying the student $25 an hour to work with him. He also has a gentleman, Neil Walton, who helps with his IT needs.