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?

Phlegm Story - Part II

Back in October of last year, I wrote an article, ThePhlegm Story. At the time, it seemed I was in a never-ending battle with phlegm. It wasn’t just the quantity of phlegm, it was also the thickness of it. Looking back, I am amazed how the issue affected my daily life and my strength.

I am pleased to report that for the last two months the phlegm issue is under control. Let me tell you what I discovered and what I did about the problem.  Note: Please check with your doctor before trying anything drug related, even if it is over the counter.

First, I had a good discussion with my doctor about the issue. He came up with two potential causes and we discussed what to try initially.

Second, I found that certain foods generate far more phlegm than others do. Dairy products are now consumed in moderation. Soy oil products can also be an issue. If I am aware of what I’m eating and when I eat them, it makes a difference. I try to consume phlegm-generating products for breakfast or lunch. This gives me several hours to clear my system before bedtime.

Third, choking generates an over-abundance of phlegm. If I am cautious when chewing and swallowing, the choking issue is not an issue or at least an infrequent issue.

Fourth, when I am generating more phlegm, a half-teaspoon (2.5 ml) of guaifenesin (i.e. Mucinex or a similar generic product) in the evening clears the problem right up within a few hours. Only rarely in the beginning did I have to take a half-teaspoon earlier in the day.  And, remember to drink more water when using guaifenesin. I find it helpful to have a glass of water first thing in the morning.

A side effect of this phlegm issue was the constant clearing of my throat (several times an hour). Recently, I might clear my throat 3-4 times a day. 

Swallowing and Choking Difficulties?

While checking my Facebook page, I ran across a link to the ALS Association’s ‘Living with ALS Manuals’ on the Kennedy’s Disease Team Great Britain page. Since many symptoms with ALS are similar to Kennedy’s Disease, I explored some of the manuals and found some of the information relevant and potentially useful for those of us with SBMA. 

The first manual I want to make you aware of is:

Adjusting to Swallowing and Speaking Difficulties

Swallowing and choking, at some point in the progression of Kennedy’s Disease, can become an issue. This ALS manual tackles many of the concerns in an easy to understand manner. Speech issues are not as prevalent in Kennedy’s Disease, but it can be an issue for some of us living with the condition. This manual also discusses communication devices including aids to use computers.

TABLE OF CONTENTS

·         Swallowing
How does ALS affect swallowing?
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?
What if you cannot consume enough food, even after changing the consistency and using supplements? 

·         Speaking
What can you do if your speech sounds slurred?
Tips for Speaking Difficulties
Helpful Hands, Helpful Voices
Using the Telephone
What can you do if other people have difficulty understanding your speech?

·         Communication Devices
How do you choose a communication device?
What types of communication devices are available?
What are the low-technology options?
What are the high-technology options?
What types of aids are available to help you access computers?
What are the “Alliance for Technology Access for the Disabled” and “The Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)”?
Where can you find funding for these devices?

A few examples of the information you will find in this manual follows:

WHAT IF MUSCLE WEAKNESS AFFECTS YOUR EATING HABITS?

A good rule to follow is to swallow two or three times with each mouthful in order to make sure that all food is cleared from your throat. Moistening food with sauces and gravy is helpful in preventing the feeling of pieces being stuck. Taking a sip of liquid after each bite also may help move the solids.

Moreover, try tipping your chin downward as if you are looking at your plate, so that you shift the structures into place which protect the airway, as opposed to tilting your head backward.

WHAT CAN YOU DO TO CONTROL YOUR SALIVA?

The body produces about four-to-six cups of saliva every day. Normally, this saliva is being moved in the mouth and swallowed unconsciously. If your swallowing muscles are weakened and your lips and jaw are not in control of the saliva, you may have difficulty keeping it in your mouth (drooling), or experience some occasional coughing or choking.

If your saliva is thick, it is important to take in enough fluid to make your saliva thinner. It is easier to swallow thin rather than thick saliva.

If excessive saliva becomes a problem, you should talk to your doctor about the possibility of using medicine to control it. There are also suction machines available which are used to dispose of excess saliva; you can get more information about these aids from your nurse or doctor.

If you are experiencing swallowing issues or are finding it more difficult to communicate, please check out this resource from the ALS Association.