Cerebellar ataxia
Testimonial from Thorkild Who has Ataxia
THORKILD ERRITZØE
Generalkonsul
E-mail: thorkild@erritzoe.com
TESTIMONIAL
Personal information
Man born in 1935 in Denmark.
Diagnosis: Cerebellar Ataxia
My sickness started slowly back in 2003.
The following 4 years my gait became increasingly worse and I started having speaking problems – especially in the mornings.
Treatment: absolutely nothing ! The neurologist at the Copenhagen University Hospital told me that there was no cure. It was a progressive sickness and the only hope was that due to my age the sickness would most likely develop slowly over the years.
I had to change my living from a big house with many staircases to a protected apartment. My walking problems became beyond endurance with daily falls and lots of injuries as a consequence.
Finally – spring 2013 I was instructed not to walk at all, and was submitted to a wheelchair. Doctor’s order ! By ordering this the doctors would for any reason avoid further injuries to me by falling.
This enormous change in my life style resulted in serious depression, which lasted about 2 months.
Motion Therapeutics (MT)
In my daily investigations in medical literature and information found on the internet I came across a publication from MT offering a balancewear vest.
The problem was that I had to travel to USA if I wanted a vest. I therefore started a market research within the international medical field in order to get more information about the vest. My sister is a doctor, and she helped me in my investigation.
I was in contact with the neurologists at the Copenhagen University Hospital, the University Hospital in Munich, Germany (professor Thomas Brandt who had diagnosed me), the Ataxia Foundation of Denmark and the Ataxia Foundation of UK.
Unfortunately I only received negative feedback. Many had heard about the balance vest but no one believed in its ability to stabilize these types of balance problems.
Meeting with Cindy Gibson-Horn (CGH) – inventor of the vest
Despite all the bad publicity I had obtained I finally decided to try to get an appointment with CGH in San Francisco. She was most obliging and asked me to have a video taking of my gait and send it to her along with the official diagnosis of my sickness.
In spite of my handicap – SAS and my daughter brought me in my wheelchair to the clinic of CGH in San Francisco. It took place October 2013, and it goes without saying, that Cindy (CGH) really took excellent care of me from the moment I “rolled” into her clinic. My daughter and I were
impressed by the efficiency and professionalism of her performance. After having pushed me around and tried to get me totally out of balance for some time, Cindy said the fantastic and unbelievable words “You don’t have to sit in a wheelchair”.
Cindy then started building up a vest, which would suit me and help me in keeping my balance no matter what kind of exercise I performed. We are not only talking about normal walking but I should also walk backwards and to the sides, pick up things from the floor, reach up for things far beyond my natural height etc.
Having “worked” with me for a couple of hours and placed all kind of weights in my vest on various places on my back, shoulder, stomach and front, Cindy told me that she had finished the job and I could start walking. First I tried within the parallel bars, and here I walked normal without falling to the sides or crossing my feet. Then I asked whether I was allowed to try to walk up and down the hall space ?
“You just try”, Cindy said. For everyone who have seen my gait before such as my daughter, we experienced a miracle. I walked without any problems, and I was even able to look to the sides when walking, which I haven’t been able to do for years.
Having embraced and thanked Cindy for the incomprehensible help I walked out of her clinic – leaving my wheelchair behind.
Upon my return to Denmark I swore that I would do my best in order to arrange that BalanceWear would be introduced to the Scandinavian market in order to help other people with balance problems.
If everything goes according to plan I am happy to announce that as from June 2015
Motion Therapeutics, BalanceWear will be available in all Scandinavian countries.
Wonderful! Not only Scandinavians but also other Europeans will then only have to go to Skodsborg Physiotherapy in Denmark avoiding the long travel to USA. If they are successful most likely MT will also have other representatives appointed in more European countries.
I have deliberately postponed this testimonial for half a year. I suppose that everyone will understand that in the beginning I could hardly believe that all of a sudden I was ”brought back to life”. I am so happy to report that since Cindy put on my vest I have become even better. In my home I am now frequently able to walk without the vest and my handwriting and speech have improved. I am more capable to use my computer, and someone might even claim that my intellectual faculties have improved.
On top of all this I am so happy to report (knock the wood) that I haven’t fallen one single time since Cindy put on my vest.
All in all a SUNSHINE STORY. Apart from what I have stated in this testimonial I am only too glad to receive inquiries from interested people. My mail address is: thorkild@erritzoe.com
FINAL PRAISE to CINDY:
Congratulation Cindy for inventing your simple solution to an extremely complex problem, a mechanical balancing of one biologically very complicated imbalance.
Thorkild Erritzøe
Skodsborg, Denmark – March 16, 2014
Thanks Thorkild!
cindy
International Ataxia Awareness Day
This video link is great. Watch all the videos. They are powerful.
Have a great week. Be safe.
Cindy
Falls and Emotion
Yesterday a gentleman asked why his wife falls when she becomes upset; such as in an argument.
I told him many people have to use all their cognitive resources to stay upright. When they are distracted from concentrating on their balance they fall or stumble.
Do you fall when you are distracted?
I searched on the internet but didn’t find exactly what I was looking for but found this very descriptive article on Cognition, Emotion and the Cerebellum
emohttp://www.ataxia.org/pdf/generations_articles/Cognition,%20Emotion%20and%20Cerebellum_Schmahmann_Summer%2009.pdf
Read Full Post | Make a Comment ( 3 so far )handSteady: Product for Improving Steadiness With a Cup
Very nice product video for patients with tremor or shakiness of the the upper limbs. Sometime BalanceWear will stabilize the trunk thereby improving upper limb steadiness – however this is a good product too!
Cerebellar Stroke “Walking Just Got Easier”
I just heard from another therapist that a patient with a cerebellar stroke was immediately able to walk easier with the BalanceWear Lumbo Sacral Orthotic. The patient experienced a CVA in September 2013 affecting the cerebellum. He participated in 25 days of inpatient rehabilitation then 3 months of outpatient physical therapy while working towards restoring his independence and his ability to safely perform functional mobility tasks. Prior to the CVA, Mr W. was a very active man, enjoying outdoor projects and spending time at his family’s river lot property.
Following the stroke, he relied on the assistance of a rolling walker for walking and experienced much difficulty with turns and changing directions. Mr. W. was working on progressing to a quad cane in physical therapy when he came Lycoming PT to be fitted for the BalanceWear LS Orthotic. Mr.W described since the CVA, everything he had to do day to day was a “chore”. Additionally, he always had someone around when he was at home to ensure safety and missed his independence. Loss of independence not only affects the patient but the whole family.
The BalanceWear Lumbosacral Orthotic made significant changes in all objective measures along with allowing Mr. W to progress from a rolling walker to a single point cane with improved gait dynamics and speed in the same session. Improvements in clinical assessments include: Dynamic Gait Index from 10/24 to 15/24 (This is a test that examines how a person walks performing various tasks such as: walking looking up and down, walking turning your head side to side, stepping over objects, climbing stars, etc.), Sensory Organization Test composite score from increased from 76% to 84% ( This test determines how the neurological system interprets visual, vestibular and somatosensation), and Timed Up and Go (TUG)from 44.37” with quad cane to 21.66” with a regular came. (The TUG represents funtional mobility of getting up from a chair, walking 10 feet turning walking 10 feet and turning and sitting down) The patient subjectively reported “walking is just easier” and that he had an improved sense of stability on his low back.
He received his BalanceWear orthotic on 4/15/14 at Lycoming PT then visited his physical therapist, TM in Vandergrift, PA the following day to show him the improvements the orthotic offered him. T was using Rocktape techniques with Mr. W in therapy and because of the response he had with this approach, T did further research and found the BalanceWear LS Orthotic and recommended Mr. W be evaluated for it. T was so excited and pleased with the immediate improvements that he suggested Mr. W share his story and success with the local news station to reach others who could benefit from the BalanceWear Lumbosacral orthotic.
This was such a great treatment story I just want to share it with you.
Other patients with cerebellar stroke are improving in Acute rrehab once this new treatment is applied. Ask you therapist if they have heard of it?
Hope this is on the news and I can forward the link!!!
Cindy
Polly Swingle’s Slide Presentation for NAF: Exercise and ATAXIA
Read Full Post | Make a Comment ( 4 so far )Rehabilitation for Ataxia
In general this is a good artice. It doesn’t get what I do and refered to our article as general weighting. However, the article addresses studies with different neurological diagnoses and the research that was done. Our research in BBTW was only one of three randomized controlled studies..Yea!
http://www.sciencedirect.com/science/article/pii/S1877065714000037
Exercise: Basic and Intermediate Hip Exercise
Hip strength is integral to improving balance during standing or walking activities. Below are exercises to strengthen the hips in two directions: abduction and adduction.
Abduction involves moving the leg outward, away from midline of the body.
Adduction involves moving the leg inward, toward midline of the body.
Basic (Snow Angels)
1. Lay on back with arms at rest on chest or abdomen and head supported with a pillow
2. Perform “snow angel” movement: Move right leg slowly and smoothly away from and then back toward the left leg while keeping legs in full contact with the surface.
3. Perform 3 sets of 10-20 repetitions or until fatigued
4. Repeat on left leg.
5. MODIFICATION: if this exercise is too difficult to perform due to friction of the moving leg on the sliding surface, place a plastic bag under the heel of the moving leg to reduce friction.
Muscles used: inner thigh and outer hip muscles
Intermediate (Clam shells for abduction)
1. Lay on side on a firm surface (floor or firm bed) with knees bent to 90 degrees.
2. Keeping your feet touching, hinge open your top leg about 12 inches without letting your hips fall forward or backward. Your knees will open up like a clam shell does (hence the exercise name).
3. Hold for 1-3 seconds and perform 10-20 repetitions or until fatigued.
4. Lay on other side and repeat
Muscles used: outer hip muscles
Intermediate (Pillow squeezes for adduction)
1. Sit upright on firm surface (chair, bench, etc.) with good posture and feet flat on floor with knees bent to 90 degrees.
2. Place pillow between knees and squeeze that pillow for 3-5 seconds and repeat 10-20 times or until fatigued.
Muscles used: inner thigh muscles
Empathy
Empathy: To recognize emotions felt by others
http://www.hhnmag.com/hhnmag/HHNDaily/HHNDailyDisplay.dhtml?id=7530009619
This video depicts the emotions of being in the hospital of both caregivers and patients. Everyone has something going on in their head at all times. Many times we don’t take the time to understand how the person feels, their wants, or their needs. We put our own thoughts into the equation about what we think they need as health care professional.
I saw an email come by the other day of a woman crying as she saw a video of a person able to dance at the National Ataxia Foundation…she wrote she is afraid to leave the house because she knows people think she is drunk…but she has ataxia. One of the doctors I showed the same video to said, “She said she had ataxia..right? But you don’t know…” In other words he felt she was magnifying her symptoms or she had a psychological problem. Why would someone be at the National Ataxia Foundation Meeting???
When I mentioned this to the person in the video ( the person who could dance for the first time in 12 years) she said the first few years they sent me to a psychologist. Really!!! Why can’t we just try to help people instead of making judgements.
What I can’t understand is why we wouldn’t want to understand why she can dance rather than think she is having symptoms of ataxia for alternative purposes.
I will continue this discussion… Please try to understand and not make judgements:)
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BalanceWear: Stabilize Your Body 