Updated Swallowing Exercises

This last week I saw a Ear, Nose and Throat specialist. He scoped my throat and saw significant atrophy in the sphincter muscles and voice box. Below are a few updated Swallowing Exercises provided by a speech therapist.

Perform each of these exercises 10-20 times in a row.

1. Oral Control Exercises

    a. Using lips and tongue, move straw from left cheek to right cheek.

    b. Place straw at center of lips. Using lips and tongue, move in and out.

2. Pharyngeal Stripping Exercises

    a. Swallow hard, squeezing all your muscles. Pretend you are swallowing an egg.

3. Tongue Base Exercises

    a. Stick tongue out, bite tip with teeth or hold tip with a gauze pad. While doing this, swallow, keeping your tongue anchored.

    b. Pull the tongue into the back of the mouth, keeping tongue tip down. Hold for a slow count of 5.

4. Laryngeal Elevation Exercises

    a. Start to swallow normally. Hold your Adam’s apple up with your neck muscles when it gets to the top. Hold for a slow count of 5.

Here is a link to a video on throat exercises:  https://www.youtube.com/watch?v=ZS_4fO6MxyA&feature=share

Muscle Tissue Changes with Aging

I caught a comment last night while watching TV that was interesting. The body loses an average of 5% of its muscle tissue with each decade after 30. It made me realize the double jeopardy those of us living with a progressive muscular disorder face.

I turned 70 this year. Over the last several years, I noticed my muscle mass appeared to decline more rapidly. Initially, I concluded this was more a perception and not reality. After reading this study, I now believe it is true. Interesting.

Today I did a little research and came across the following NIH study. Follow the link in the title to read the entire article.

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Muscle Tissue Changes With Aging

“Purpose of review
This review article focuses on the changes that occur in muscle with age, specifically the involuntary loss of muscle mass, strength and function, termed sarcopenia. Particular emphasis is given to the metabolic alterations that characterize sarcopenia, and to the potentially treatable causes of this condition, including age-related endocrine and nutritional changes, and inactivity.

Introduction

One of the most striking effects of age is the involuntary loss of muscle mass, strength, and function, termed sarcopenia. Muscle mass decreases approximately 3–8% per decade after the age of 30 and this rate of decline is even higher after the age of 60. This involuntary loss of muscle mass, strength, and function is a fundamental cause of and contributor to disability in older people. This is because sarcopenia increases the risks of falls and vulnerability to injury and, consequently, can lead to functional dependence and disability. A decrease in muscle mass is also accompanied by a progressive increase in fat mass and consequently changes in body composition, and is associated with an increased incidence of insulin resistance in the elderly. Furthermore, bone density decreases, joint stiffness increases, and there is a small reduction in stature (kyphosis). All these changes have probable implications for several conditions, including type 2 diabetes, obesity, heart disease, and osteoporosis.

Recent findings
Recent data reported include those regarding the potential role of insulin resistance in the development of sarcopenia, the potential role of androgens and growth hormone in the treatment of this condition, the usefulness of exercise including both resistance and aerobic training to improve muscle growth and function, and, finally, the possible use of nutritional manipulations to improve muscle mass.

Summary

Sarcopenia is likely a multifactorial condition that impairs physical function and predisposes to disability. It may be prevented or treated with lifestyle interventions and pharmacological treatment. Further long-term investigations are needed, however, to ascertain what type and combinations of interventions are the most efficacious in improving muscle mass and function in older people. …”

Image:  myheart.net

Kennedy's Disease Videos

Some of us would rather watch a video than read a book or magazine. So, below are several YouTube videos concerning Kennedy’s Disease, KD research, personal stories of people living with KD, and a few other relevant topics. If you are aware of other videos concerning KD, please let me know and I will update this list.

Please note that some videos are not the best quality.

1. Dr.Fischbeck on Kennedy’s Disease
2. Spinaland bulbar muscular atrophy
3. Learningabout Kennedy’s Disease – Heather Montie, PhD
4. ChrisGrünseich - NIH Clinical Fellow
5. SBMA(KD) Clinic
6. KDModels – Part I - Lenore K. Beitel, Ph.D.
7. KDModels – Part II - Lenore K. Beitel, Ph.D.
8. Kennedy’sDisease – Part I – Ed Meyertholen
9. KD –Part II – Ed Meyertholen
10. KD –Part III – Ed Meyertholen
11. AfterTen Years – The KDA and KD Research – Ed Meyertholen
12. Sex& All That Jazz – Part I - Dr. Mary Ellen Romero
13. Sex& All That Jazz – Part II - Dr. Mary Ellen Romero
14. Kennedy’sDisease Free Children thru IVF
15. RevisitingKD Free Children
16. IGF-1/Aktsignaling in SBMA muscle - Maria Pennuto, PhD.
17. SmallHeat Shock proteins in SBMA - Angelo Poletti, Ph.D.
18. RareDisease Day and Kennedy’s Disease – (Personal Story)
19. Rare Disease Awareness and Kennedy’s Disease – (Personal Story)
20. Kennedy’sDisease – (Note 1^st three minutes are an introduction to KD)
21. A NewHandle on Kennedy’s Disease
22. Handtremor, tongue and perioral fasciculation in a patient with Kennedy disease
23. KD andthe Waites – (Personal Story)
24. UnderstandingMuscle Atrophy (Muscle Loss): Fitness Exercises
25. TreatmentDiary of Mr. Mattheis  - (Personal Story – Note information provided cannot be verified)

Walk-Assist is becoming a reality

Over the last five years I posted several articles on robotic devices that may someday be available to assist those of us living with Kennedy's Disease.The Nikkei Asian Review published an article on the latest success in this amazing area of medicine.

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Wearable walk-assist gets green light for sale in Japan

Cyberdyne's HAL for Medical Use, lower limb type, is designed to help patients with such conditions as ALS and muscular dystrophy.

TOKYO -- Japan's health ministry approved on Wednesday sale of a wearable walk-assist robot for use in medical facilities, underscoring the government's push to promote such products as part of growth strategy.
     The HAL for Medical Use, lower limb type, from startup Cyberdyne is the first wearable medical robot approved for sale in Japan.
     The product is designed for use in healthcare facilities by patients with eight incurable conditions including amyotrophic lateral sclerosis (ALS), muscular dystrophy, spinal muscular atrophy, and spinal and bulbar muscular atrophy, given height and weight requirements.
     Cyberdyne originated at the University of Tsukuba. Yoshiyuki Sankai, a professor there, developed the technology and heads the company as president.
     Sensors attached to the thigh and other parts of the body detect the weak signals from nervous system, and the motor-powered limbs facilitate the movement of the patient's joints by leading them in the desired direction. This helps the body remember how to walk, according to the company.
     The robot could delay the progress of a disorder, or help regain leg function.
     Clinical trials at a national hospital in Niigata Prefecture and elsewhere showed that 24 patients who underwent nine sessions of exercises over a three-month period could walk greater distances than those who did not undergo such exercises.
     "We hope to introduce it initially to eight hospitals including the Niigata hospital," Sankai said. If the treatment qualifies for insurance coverage, the company will work to expand the application to spinal cord conditions, too. ...

To read the entire article, follow this link:   http://asia.nikkei.com/Tech-Science/Tech/Wearable-walk-assist-gets-green-light-for-sale-in-Japan?page=1

I’m Melting … I’m Melting!

No, I’m not melting, but I am shrinking.

It seems like this last year’s wasting is more focused on my arms and shoulders. Yes, there has been wasting in the past, but it is much more noticeable now. I suppose it goes along with my ‘pencil neck’. J

When I look at my arms this morning, they are much ‘more skin than bones’. The skin hangs in certain places where there used to be muscle. I’m certain there is still some muscle there; it is just much more difficult to find.

The good news is my leg strength continues to be good. I am doing the same number of reps in all my standing exercises.

Perhaps it is time to see my physical therapist again. He can evaluate my current capabilities and, if needed, change my arm and shoulder exercises. If you haven’t been evaluated before, I highly recommend it. Just make sure the PT has experience in dealing with Kennedy's Disease or at least progressive neuromuscular conditions.

A couple of questions:

• Have you noticed more wasting (physical appearance) in certain parts of your body?
• What has been your experience with physical therapists?

Pencil neck

I am getting a pencil neck. The atrophy in the neck region is now evident. I didn’t notice it a couple of years ago, but it has become more prominent within the last nine months. And, with the atrophy I noticed that many evenings and occasionally even in the afternoon my neck muscles just do not want to hold up my head. Sometimes I have cramping or pain, but most of the time it is just weakness that I experience.

I have seen this condition in several others with Kennedy’s Disease and my brother has experienced the problem for the last ten years or so. For some reason I thought I was immune. I continue to perform neck exercises every day and they seem to help, but something has happened recently that I cannot explain.

I attribute some of the problem to working too many hours on the computer. I know that several days this winter I spent more than four hours at the PC without any breaks. A few days I probably spent close to eight hours working at the PC. I found if I spend less time at the computer and schedule more breaks, the neck fatigue is not evident or not quite as bad. This last week I spent an hour or so mid-afternoon in my recliner using a neck pillow (dog-bone). It seemed to help.

My questions for you are:
1. Are you having any neck weakness issues?
2. If so, is there anything that you have found that helps?

I look forward to hearing from you.