Archive for September, 2014

Ataxia: Does Weighting Increase Ataxia?

Posted on September 29, 2014. Filed under: BalanceWear Stabilizing Garments, Neuroplasticity, Questions and Answers, Research |

Hey Cindy
I have heard arguments against weighting individuals, saying it will cause the ataxia to worsen when they are not wearing the weights. Is this the case with Balancewear?

Answer:
I have heard of that literature too. It was a concern for me in the second paragraph beleow. But then we learned something valuable.

I would say in 95 % of the cases I have worked with and have heard about BalanceWear (BW) helps a patient have less ataxia or controls it better than without BW during wear. The difference I believe stems from wearing weights to load the body not balance the body as we do in the BBTW technology. When we see increased ataxia in PT it is often short-term during a session where the patient is heavily weighted to control their ataxia and we take it off.

We did have one person get worse initially and were going to take the vest away in one of our BBTW research projects. The patient had worn it for 10 hours when we asked she wear it for 1 hour daily per week. She told us she felt so much better in the device so she didn’t want to take it off. We said we would watch for one more week. She continued to wear it for 10 hours per day. I am so glad we watched her as the BERG score went up two points with only wearing the device no PT. Think what PT + BalanceWear could have done. So the question becomes dosage. I have no idea if patients wore heavy weighted vests if they would get better too. What we are doing with BalanceWear is much more refined and specific to the patient. Each person has their specific weight placement and distribution based on an assessment of directional instability.

Our advise is that they wear BalanceWear for several hours every day..The dosage is still being worked out
(actually I think it should be patient specific) and therapists as well as patients have an opportunity to add to the body of knowledge with this.

In a recent case report the patient TBI wore it 6 hours per/day. If patients moves with improved motor control over hours every day they get the mass practice that is touted in the literature that creates cortical reorganization necessary for neuroplasticity. Unfortunately many therapists in the clinic are unable to give their patients the practice needed or to create an environment that leads to smoother motor control over many hours a day. BalanceWear provides this to patients; not only in the clinic but at home during their daily activities which we try so hard to emulate in the clinic.

I believe I am shifting our practice to think beyond the clinic with a device that can help patients over the long run; which many of them require.

I am very sorry the patient had to discharge. I actually have patients who come to me for that reason. Using the BBTW technology and BalanceWear often gives a patient a new platform on which to rehab as their balance is stable.

Thanks for the opportunity to share my thoughts.

Anyone one out ther want to share your thoughts on if your ataxia is worse when you take it off? Please let me know wear times etc.
Cindy

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International Ataxia Awareness Day

Posted on September 23, 2014. Filed under: Ataxia, Balance, Cerebellar ataxia, Cerebellar Degeneration, Falls, Spinal Cerebellar Ataxia |

This video link is great. Watch all the videos. They are powerful.

Have a great week. Be safe.
Cindy

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Don’t Tell Me I Won’t Be Able to Do That!

Posted on September 2, 2014. Filed under: Quality of Life | Tags: , , , , |

I met a gentleman named Mort at breakfast last Saturday. He wore a shirt noting that he had finished a Marathon. His friend wore one that said half marathon. We started talking and found out that they had done marathons/half marathons and were going to be in one the next day…

Noticing a scar on his knee that looked like he had a total knee operation I asked about it. He said, “No that was from tearing off one of my quadriceps. The doctor told me I would never bend my knee. After I finished a marathon I went into his office and handed him my 3rd place metal for my age and a shirt. I told him to keep it for a month. He asked why. I told him to think about what he tells his patients. He should NEVER tell them they won’t be able to do that again! What kind of Doctor does that?”

Mort is 82 and still very active:)

Interestingly, I shared my stories about doctors telling their patients not to come and try BalanceWear, that it is all snake oil or a waste of their money and time. I have actually had a few therapists do the same. Again, who are these doctors/healthcare providers who are not able to help their clients but tell them not to try to help themselves?

A doctors oath http://en.wikipedia.org/wiki/Primum_non_nocere
First do no harm. I understand that physicians may be trying to protect their patient from being scammed. However, that being said, we know if BalanceWear helps with in the first visit. There is no harm from trying. Often their is benefit. I understand we shouldn’t make false promises to patients. We walk a fine line as professionals not to create false hope. However if we do not give patients any hope or thoughts on how to improve many times they will get worse. Is that right?

If you are one of those patients who have seen a therapist trained in Balance-Based Torso-Weighting ask us for a weight. We will send you a half pound to take to your doctor for a paper weight so he can think about why he tells you not to try new developments.

We have a vested interested in helping people across the world live a better life by improving their mobility and function. We want to celebrate with you. Please join our https://www.facebook.com/pages/BalanceWear-Stabilizing-Garment/127437677280484

Let us know where BalanceWear travels:)

Cindy

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