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ataxia information
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ataxia information - March 14, 2001 9:40:00 AM
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kimhyman
Posts: 3
Joined: March 13, 2001
Status: offline
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PLEA FOR HELP!
We are 4 student Physical therapists from the University of St. Augustine in Florida, trying to gather information for a presentation on ataxia. We have been working on a literature review of the available research but have not had much success gathering information on treating this condition. As student physical therapist, we are interested in providing the highest level of care possible for our patients. Anyone who has experience treating patients with ataxia-causing disorders who answers the following questions and/or is able to provide any leads to sources of information, would greatly aide our understanding of these conditions.
Thank you so much for your time.
Sincerely, Jeff, Kim, Lisa, and Chris
Information can be e-mailed to: kimhyman@hotmail.com or jjadczak@lycos.com
1. Type of ataxia
2. Incorrect diagnoses made
3. Current age
4. Age of onset
5. Current and past signs and symptoms
6. Past treatments. Examples:
*Medications
*Physical therapy
*Occupational therapy
*Speech therapy
· What treatments were successful? Which ones were unsuccessful?
7. Diagnostic procedures
8. Progression of disease
9. Family history
10. Activity level
11. Support services
12. Other medical conditions
13. Ethnic background
14. Gender
15. Any other information you feel would be helpful
16. If you have any friends with ataxia that would like to participate, please pass this on.
Thank you for your time.
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Re: ataxia information - March 14, 2001 6:22:00 PM
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Andrew M. Ball, MS, PT
Posts: 500
Joined: October 8, 1999
From: Chapel Hill, NC, USA
Status: offline
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Come on guys, St. Augustine students can do better than that! Spending less than 30 seconds on a PubMed search, I was able to generate 35 hits with the following search string:
Ataxia and "physical therapy"
117 hits are generated with the search string, took about 20 seconds:
Ataxia and "cerebral palsy"
If you want to check out the broad topic of Ataxia, just using that search term will generate 14,000 hits . . . though you'll get a lot of trash and I don't blame you for not wanting to go through all of that.
That still leaves 152 studies. Do you mean to tell me that you were not able to identify ANY of these studies, and that when you did, that NOT ONE of the 152 studies was able to answer these questions for you? I appreciate your desire to providie "the highest level of care possible," but it doesn't sound like ya'll looked very hard to answer the questions for yourself.
Brain and Bannister's Clinical Neurology (usually a required text for most PT students), should answer just about any question that the articles don't easily answer (like types, typical ages of onset, etc. etc.) The program at St. Augustine is one of the better PT programs in the United States, RehabEdge has come to expect much more from David and Stan's students.
The only question that cannot be answered via MEDLINE or your PT texts, would be "What treatments were successful? Which ones were unsuccessful?"
RehabEdge look forward to hearing what you find. Thanks for your question.
Respectfully,
Andrew M. Ball, MS, MBA, PT
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Re: ataxia information - March 15, 2001 4:06:00 AM
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cheapo
Posts: 9
Joined: February 3, 2000
Status: offline
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Hi, currently i have a patient who is very very very ataxic.... what he has is a subarachoid haemorrhage of the posterior circulation.. which affects his cerebellar and hence giving him cerebellar ataxic...
while for more information you may want to look up carr and shepherd book "neurological rehabilitation optimising motor performance" 1998... they have a good chapter on cerebellar ataxic.
and yes i have to aggree with what andrew said... you can find lots of inform on ataxic from the web! just keep searching!
irene
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Re: ataxia information - March 15, 2001 12:53:00 PM
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kimhyman
Posts: 3
Joined: March 13, 2001
Status: offline
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Thank you for the responses. Sorry to hear some think so low of us. The point of this posting was in no way to try to get you guys to "do our homework for us." Yes, we did an extensive search prior to this posting, (medline, Pub Med, and a couple of other search engines that I can think of at the moment) but most of the research we found was on genetics and medical treatments. Ataxia is such a broad subject and there are so many types, that we wanted to both narrow down our topic and to find out if different types of physical therapy treatments have been more or less beneficial per type of ataxia. Therefore, we decided to e-mail a number of patients with ataxia to find out the exact type they had and what treatments they felt were of the most benefit to them and which were the least. We have been getting numerous responses and are doing a more in-depth literature review on those types of ataxia. Many of the responses, however, have said that the only contact with physical therapy they have had has been anywhere from 1 treatment to 1 month. Our professor then suggested that we post this on-line to find out what the professionals have to say. Most of the presentations in the class have 1 guest speaker in addition to a literature review, we wanted a little more than that.
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Re: ataxia information - March 15, 2001 5:46:00 PM
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Andrew M. Ball, MS, PT
Posts: 500
Joined: October 8, 1999
From: Chapel Hill, NC, USA
Status: offline
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Nobody thinks low of the students at St. Augustine, I'm not sure why any of you would think that. The sentiment is quite to the contrary. I don't doubt that ya'll spent considerable time trying to access articles through MEDLINE, but I'm a little puzzled as to why ya'll didn't find anything. I think that ya'll may have some difficulty constructing Search strings, and given up too early that's all.
If you don't use the correct search strings, it's not going to matter how much time you spend on the search, you'll come up fruitless and frustrated.
It's for that reason that I've tried to offer some suggestions on search strings to use, such as:
Ataxia AND treatment AND training
Ataxia AND treatment AND exercise
Ataxia AND treatment AND "physical therapy"
As the 4 of you have found, the following search string will yield information on lots of medical treatments for Ataxia . . . not much use for PT's:
Ataxia AND treatment
I'm just a little disappointed that ya'll gave up at that point, and that instead of searching again when that suggestion was spoon-fed to, your group decided not to return to MEDLINE armed with new search string ideas and re-present your findings, but chose rather to take a defensive posture with your comments, “Sorry to hear some think so low of us. The point of this posting was in no way to try to get you guys to ‘do our homework for us.’ Yes, we did an extensive search prior to this posting, (medline, Pub Med, and a couple of other search engines that I can think of at the moment) but most of the research we found was on genetics and medical treatments.”
Frankly, the first comment is a little disrespectful and offensive to those of us trying to help your through the process of improving your evidence-based and literature searching skills. You’re not going to learn that if you’re just handed the answers you seek. As for searching MEDLINE, I don’t doubt that you did . . . you just didn’t do it correctly, efficiently, or effectively. Still, the mere attempt to do so is more than most practicing therapists would do, and for that, you are to be commended. Please understand that I’m trying to give ya’ll suggestions on how to make future searches more productive for yourselves . . . so that evidence-based practice becomes both easy, meaningful, and productive for you. If you spend more than 30 seconds doing your search, and you still haven’t identified meaningful studies, you’re doing something wrong. Conducting massive sweeps of the literature, as ya’ll have appeared to have done, will produce little useful information, and tends to turn students away from practicing physical therapy from a perspective of scientific fact. That’s the wrong message to get from these kind of exercises.
To just hand over the information to you, without helping you through the process, would rob you, no . . . rape you . . . of the opportunity to understand and integrate how evidence-based practice works. I respect ya’ll too much to do that.
Oh well, you'll know for next time right?
In any event, I found three specific references that you're looking for, generated from the following search strings:
Limit = Clinical Trial
Ataxia AND treatment AND training
Ataxia AND treatment AND exercise
Ataxia AND “coordination training”
Note: be sure to use CAPITALS when typing in the word AND. Also keep in mind that putting a phrase in quotes limits the results to abstracts that have the words together, as opposed to
Ataxia AND Coordination AND training
The above string would find all abstracts with these words, not just the ones specific to “coordination training.”
Try the above strings and check to see if you make the following hits:
Rodgers MM, Mulcare JA, King DL, Mathews T, Gupta SC, Glaser RM. Gait characteristics of individuals with multiple sclerosis before and after a 6-month aerobic training program. J Rehabil Res Dev 1999 Jul;36(3):183-8.
Ganz SB, Levine DB, Axelrod FB, Kahanovitz N. Physical therapy management of familial dysautonomia. Phys Ther 1983 Jul;63(7):1121-4.
Brown DA. Standing walker for the weak, ataxic, or cerebral palsied adult. Phys Ther 1979 Mar;59(3):296-301
This shouldn’t take more than a few minutes.
Drew
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Re: ataxia information - March 16, 2001 5:28:00 AM
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David
Posts: 19
Joined: February 8, 2000
From: St. Augustine, FL....USA
Status: offline
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Drew and BobCat, et al.
Hmmm? I am not sure how to respond to this dialogue you are having with some of my students and the members of RehabEdge. I warned them about you! [IMG]http://www.rehabedge.com/forums/smile.gif[/IMG]
I appreciate your feelings about the inefficient searches the students must have done while trying to find literature. I accept responsibility for this. I see now that I need to spend more time teaching the students how to do effective searches, a task I thought was being handled by our library orientation staff.
On the other hand, I have to offer some defense on behalf of Jeff, Kim, Lisa, and Chris! Given what they knew, they have shown good effort in trying to come to a better understanding of ataxia and the suggested treatments used by therapists. They at least had the guts to write RehabEdge and attempt to get YOUR opinions on suggested treatments and the effectiveness of those treatments. As I said, I did warn them that if they did not show they had attempted to investigate the topic before writing, they would hear it from you.
I think we have all learned from this experience. I would like to share what some of the people who have reported back to the students inquiries posted on ataxia websites are saying. The people with ataxia are reporting that PT primarily provided maintenance, but no improvement. I asked the students why they thought this was the case. They said these reponses were from people with the progressive/genetic forms of ataxia. I suggested that maybe you, Drew, could offer insight to your treatement of children with CP who experience ataxia, since this does not fit the progressive/genetic form of ataxia.
I also suggested that BobCat can offer insight to his success in using the neural control system theory in his practice. Yes, we need to connect our scientific/logical sense of the neurological system to our treatment approach, but, I think it benefits our learners to at least hear from those that do use science in treatment, if they are getting good outcomes.
In closing, I thank you for challenging our future clinicians. I applaud my students for having the guts to face you. And I hope that RehabEdge will continue to be a positive, supporting tool for me and my students to learn and grow!
David
------------------
David A. Lehman, MS,PT
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Re: ataxia information - March 16, 2001 6:01:00 AM
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Andrew M. Ball, MS, PT
Posts: 500
Joined: October 8, 1999
From: Chapel Hill, NC, USA
Status: offline
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Ohhhhh. That's wasn't exactly the question though. I've got TONS of things to say about my clinical experiences of kids with childhood ataxia and athetoid CP.
I've got a meeting to go to now so I'll get back to this later. In the meantime, Patricia Montgomery, PhD, PT has done a great job compiling info about childhood ataxia disorders and experiences with that popluation. I wouldn't have much to add to it, but I think I've got an audio recording of it somewhere. If your students would like, I'll ask her if she would mind my making a copy.
Drew
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Re: ataxia information - March 18, 2001 3:36:00 PM
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kimhyman
Posts: 3
Joined: March 13, 2001
Status: offline
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I'll start off with an apology if I overreacted in my second post. I've been
stressed out, and as you said that is no excuse for taking it out on you,
for you are only trying to help. Our first posting was just not taken in the way
we intended. Please understand that this has turned into a far greater
learning experience than we had expected! Looking back at our original
post, I can see how you would assume we did no research prior to the
posting. We figured we would ask open-ended questions so as not to limit
the answers we were given, now I know that is not exactly what you do on an
open forum. We also wanted to find out if physical therapists were treating
all ataxic conditions the same no matter the age of the condition or the
person.
We understood that ataxia is due to dysfunction of the cerebellum which is
responsible for balance, coordination, etc. Some studies we had found
suggeted that the cerebellum is a basis of the preparation of motor activity
and provides the cerebral cortex with information needed for coordinated
movements, therefore when it is affected, the motor cortex can be successful
in controlling simple tasks, but not complex.
So, what is the best treatment? We had read the books which suggested
Frenkel's exercises, PNF, Swiss Ball, weights for proprioceptive feedback,
aquatic therapy, basically any exercise that concentrated on coordination,
working on the proper agonist/antagonist responses. One response we got on
another posting suggested FES at various points in the gait cycle which I'm researching further to see if specific studies have been done with FES and ataxic conditions.
Maybe it is our ignorance, for we have not been out in the field, working
with these patients, but we just wanted to know what is truly working.
Anyone can stand up in front of the class and regurgitate the information in
our textbooks. If we wanted to do that, our presentation would have been
done a week ago. We have learned here to question everything we read and
see. (unfortunately this got me into a little bit of trouble on my first
internship when I asked for sound rationale for a couple of treatments. and
of course no rationale was given to me except "because I said so") I'm
still searching and reading (thank you for the suggestions with searches)
From other research projects I've done, it seems for every study that says a
treatment works, there is one that says it does not. Of course, I do
realize that it is our job as physical therapists to "weed" out the good
studies from the bad.
So, my question to you is are you using these treatments? The textooks say
they work, do you agree? Almost all our responses from those with ataxia
say no, PT did not work for them and most did not have the energy to
participate for over a month. (of course, all the responses we have received
have been from those with progressive ataxias)
Sorry this is so long. If you have time to respond, I would appreciate it,
if not I understand.
Drew, I would love a copy of the tape if possible, just let me know what I need to do!
Again thank you so much for your responses, I look forward to hearing from
you.
Kim
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Re: ataxia information - March 19, 2001 5:51:00 AM
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David
Posts: 19
Joined: February 8, 2000
From: St. Augustine, FL....USA
Status: offline
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Thanks to all for responding...and I appreciate your comments to me and my students. I agree that our children/students are not being educated correctly from the get go in most educational institutions (ie. K-12 public schools) and college. I was a vistim of spoon fed information taken for granted as being the truth...and I came to le4arn the hard way about critical thinking and problem solving (and continue today to learn) I will certainly inform my students of what is expected of them when asking questions in such a forum.
I wonder Bobcat and Drew and SJBird...were you educated to come out asking the right questions? When did you learn about critical thinking? I think many in our profession came out spoon fed and not the critical thinker, information finding, independent decision maker type, because our priofession was dictated primarily byb authoratative and traditional knowledge....not eveidence based. So, I guess I ask because I am willing to admit my faults, but sometimes I feel the way you write to people on this forum is as if you never went thru a growing and understanding phase that led to your way of thinking and expressing yourself as you do today.
I give no excuses and I certainly see the weaknesses in how many teach PT material today...and I am trying to incorporate methods that change that. I hope you can appreciate that in my attempt to get students to use this forum.
David
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Re: ataxia information - March 19, 2001 11:10:00 AM
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Andrew M. Ball, MS, PT
Posts: 500
Joined: October 8, 1999
From: Chapel Hill, NC, USA
Status: offline
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David,
You're right. I didn't come out of school asking those kinds of questions. Frankly, it frustrates me a little bit. That's not the point though, the healthcare environment is very different now, and your students don't have the luxury of making the same mistakes that I did.
It only took two developmental pediatricians in my first year of practice at University of Rochester for me to learn that though. They drilled me into the ground for my enthusiasm for what I thought I could bring to the autism diagnosis in treatment team. It shook my faith in my PT education, and to rattled me enough to begin searching for evidence, though on a much smaller scale than I currently review.
The following year, in eastern North Carolina, I assisted in an ortho clinic with two other therapists (one of which was a PCS), and watched a rather conservative pediatric orthopedic surgeon tear apart what I at the time felt to be excellent suggestions on the part of one of the other PT’s, regarding positioning and equipment. She had the wisdom of experience in dealing with these kids . . . but he had article upon article at his fingertips, showing why proper positioning couldn't possibly prevent scoliosis and contracture . . . the recommendations where therefore expensive and inappropriate in his eyes.
It wasn't that she was right or wrong that bothered me. I didn’t know enough to be able to jugde that at the time. What bothered me was that none of us had ever heard of the research that was being cited by the MD. There was no way to defend against the onslaught, we had no ammo. We looked like we knew less about physical therapy than he did. It must have been humiliating for her. I vowed for myself at that time that I'd never let it happen again, and I try. I'm much better armed with fact than ever before, but not perfect either. Dr. Paul Hansen, for example, often lets me know when I've missed a study.
The point is that I WISH that someone had rubbed my nose in the stink of what is tradition-based, non-scientific practice, before I graduated from PT school. I had to wait until my post-graduate pediatric fellowship to be taught that lesson the first time, and into my first year of practice in North Carolina for it to have taken hold.
Today's new graduates don't have that luxury. Especially the DPT graduates. Third party payers are breathing down our necks demanding outcomes at best, and evidence-based practice at least. Furthermore, someone holding the title of doctor, as many new graduates now do, should learn that lesson from within the profession before negatively impacting professional image . . . like I did.
Entry-level competence is a moving target. As such, I have higher expectations for new graduates than I did for myself upon graduation. Along those lines, it doesn't matter how long it took me to become competent with being able to ask the right question, or efficiently search the literature. I'm sorry to be the bitter taste of reality, but for the sake of the profession, ALL students need to be able to do that prior to graduation.
Drew
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Re: ataxia information - April 15, 2001 7:28:00 PM
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Jack Werle MS, PT
Posts: 4
Joined: April 13, 2001
From: Richmond, IN, USA
Status: offline
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Bobcat:
I'm glad there are evidence based therapists and creative problem solvers like yourself out there. But frankly, your response to the students has been arrogant and condescending. If you really want to help their education, feed them questions that help them focus their thinking without blasting them. Save your barbs for people who, like yourself, are already professionals in the field and can defend themselves. Your approach is like Mike Tyson bragging about beating up some second rate boxer in a warm-up fight.
Jack Werle MS, PT
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Re: ataxia information - April 16, 2001 9:20:00 AM
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Andrew M. Ball, MS, PT
Posts: 500
Joined: October 8, 1999
From: Chapel Hill, NC, USA
Status: offline
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Actually Jack, I think that Bobcat may be onto something here. It's true that alcohol induced ataxia may not be physiologically identical to cerebellar ataxia, but it may in fact give graduate students a way to test, on each other, the effectiveness of various types of coordination exercises.
Is encouraging students to drink unethical and inappropriate for a professor to do? Yes, no question about it, and It's not an approach that I would use. Ethical concerns aside, however, my experience is that students learn and retain information best in active situations . . . doing, rather than seeing.
Is the SJ/Bobcat idea an unconventional approach? Yes, but perhaps this is a way for students to experience the effects of a BAPS board, braiding, or Frenkel's Coordination exercises. Ever try lifting anything heavy or awkward when drunk? Is that what ataxia feels like? Can physical therapy interventions make an improvement in movement patterns? It would be interesting to find out.
Besides, at least half of the people in my graduating class (yes, myself included) worked hard, and played hard too. As a result many of us were fairly heavy weekend binge drinkers anyway. It wouldn't have been all that difficult to have gotten a few of us to participate in something of a makeshift clinical trial of coordination therapies while drunk. It would have been silly, it would have been childish, but we may have learned something very significant about the therapeutic techniques that we now use.
If anyone could get something like this apporoved through IRB, I'd be surprised and impressed . . . but it would make for an interesting poster presentation or research project.
Andrew M. Ball, MS, MBA, PT
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