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Goal Setting and Treatment for Progressive Disorders

Goal Setting and Treatment for Progressive Disorders
Amber L. Ward, MS, OTR/L, BCPR, ATP/SMS
June 8, 2016
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Progressive Disorders

What I thought I would start with today is this grouping of progressive disorders as seen in Figure 1.

 

Figure 1. Progressive disorders.

I think these are probably some of the most common that people might see. They all are progressive in one way or another. They all need occupational therapy at some point through the disease process and the lifespan. I wanted to give an overview of the symptoms and causes of each of these. There is one slide on each of these, and and then we will get into some of the goal setting and treatments. I also have some examples of adaptive equipment that would be appropriate for each population.

Multiple Sclerosis (MS)

The first disorder I wanted to speak on today is multiple sclerosis (Figure 2).

 

Figure 2. Multiple Sclerosis information.

Demographics. It is very common. There are 2.5 million people worldwide. It primarily affects Caucasians with northern european heritage. They have found that the farther away you are from the equator, the more likely you are to get MS. They are wondering if it is related to vitamin D. Women are more likely than men to get MS. The onset age is 15-50, but the peak is at age 30.

Description. It is an autoimmune disease where the body attacks the myelin, or the sheath that covers the nerves to help them transmit more quickly. The neurotransmission becomes impaired as a result.  The nerves do not work as effectively, and they fatigue more rapidly. Groups of demyelinated nerves are called lesions. They are scattered throughout the white matter in the brain. These lesions form plaques after the myelin is lost, which is like hard scar tissue. They can be seen on CT scans and MRIs. This is one of the things that leads to the diagnosis of MS.

Symptoms. MS can have almost any symptoms: increased tone; decreased tone; weakness; spasticity; problems in the sensory, cognitive, visual, and memory systems; bowel and bladder dysfunction; and numbness and tingling. You can have all or some of these issues with MS, because there is no rhyme or reason where the lesions show up in the brain.

Types. You can also have a number of different types of MS. You can have an MS that is very slowly progressing, but with a very significant downward slope. You can also have somebody that is very quickly progressing. You can also have relapsing remitting; they get a little worse, then they get a little better, and so on. Ultimately, it is going slightly down hill, but they do have the potential to get stronger after a relapse.

Medications. There are some medications for MS. They decrease the severity of the relapses and slow the rate of progression in some, but side effects are pretty substantial. Sometimes people just cannot tolerate any of the medications. There are some IV medications and some infusion medications as well.

Exercise. There have been a number of studies about exercise with MS. In general, it is found to be helpful. The trick with MS is you have to keep people from overheating. Things in the water tend to be great. It is recommended that they do outdoor things when it is cool, and indoor things when it is warm out. 

Amyotrophic Lateral Sclerosis

Amyotrophic lateral sclerosis, or ALS, has been in the news a lot with the "ice bucket challenge". Details are show in Figure 3. 

 

Figure 3. Amyotrophic Lateral Sclerosis information.

Demographics. The life expectancy is varies from three months to 30 years or more. The average is 2.5 years. It depends where your symptoms start. If your symptoms start with thumb weakness, you are going to have a much longer course, than if your symptoms start with swelling and breathing weakness. That just makes sense. About 30,000 Americans at any one time have ALS.

Description. It affects all voluntary muscles including respiration, swallowing, eye movement; anything voluntary. About 50 percent of people have a cognitive deficit along with their ALS. I think that they never use to think that your brain was affected in that way, simply because people lose the ability to speak. They are often down to answering yes/no type questions. You can hide a lot of cognitive delay with that type of questioning.


amber l ward

Amber L. Ward, MS, OTR/L, BCPR, ATP/SMS

Amber Ward has been a treating occupational therapist for 20 years; 10 years in inpatient rehabilitation, and 10 years as full time Occupational Therapy Coordinator with persons with ALS, muscular dystrophies, MS, Parkinson's, and other neurological disorders. She has treated a wide variety of patients, of all ages and functional levels. She currently is an adjunct professor at the OTA program at Cabarrus College of Health Sciences in addition to working in the clinic. She received the RESNA Assistive Technology Professional certification in 2004, a Seating and Mobility Specialist in 2013 and became AOTA board certified in physical rehabilitation in 2010. She is the author of an article about power wheelchairs with persons with ALS published in Assistive Technology in 2015, and numerous other book chapters and articles. She presents locally, nationally and internationally about ALS, power wheelchairs, research and neurodegenerative diseases. 
 



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