Sunday, May 6, 2018

Helpful Resources Available

This is a rewrite of any earlier article concerning a series of manuals available for those of us living with a progressive neuromuscular disorder like ALS and Kennedy’s Disease. The resources are available on the ALS Association website.

I explored most of the manuals and found some of the information relevant and potentially useful for those of us with SBMA. The links below are for the PDF version of the manuals.

Functioning When Mobility is Affected by ALS

Some of the topics addressed include:
  • Physical and Occupational Therapy 
  • Bone, Muscle, and Joint Problems 
  • Mobility Equipment 
  • When is it time to get a wheelchair? 
  • What types of wheelchairs are available? 
  • Power Wheelchairs 
  • Types of Seating Equipment Used with Wheelchairs 
  • Transfers without Equipment 
  • Transfers with Equipment 
  • Activities of Daily Living (ADL) 
  • Home Adaptations 
  • Ramps 
  • Stair Lifts (Chair Glides) 
  • Other Suggestions for Adapting Your Home 

Adjusting to Swallowing and Nutritional Management

Swallowing and choking, at some point in the progression of Kennedy’s Disease, can become an issue. Some of the topics addressed include:
  • What should you do if muscle weakness affects your eating habits? 
  • What can you do to control your saliva? 
  • What should you eat to maintain a balanced diet? 
  • Why should fiber be included in your diet? 
  • How many and what kind of fluids should you drink regularly? 
  • What is the most appropriate weight for you? 
  • How can you increase your intake of protein and calories? 
  • Do you need to change the consistency of the food you eat?

After the ALS Diagnosis: Coping with the “New Normal”

Some of the topics addressed include:
  • Coping with the Diagnosis 
  • Coping in Your Mind 
  • Acceptance 
  • Self-survival 
  • Feeling Different and Isolated 
  • Intimacy and Sexuality 
  • Coping with Life 

Changes in Speech and Communication Solutions

Some of the topics addressed include:
  • What can you do if your speech sounds slurred? 
  • Tips for Speaking Difficulties 
  • What can you do if other people have difficulty understanding your speech? 
  • What types of aids are available to help you access computers? 
  • Where can you find funding for these devices?

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