June

Ask the Doc: Q & A with Edward Kasarskis, MD, PhD 

Dr. Kasarskis

Edward Kasarskis, MD, PhD is Director of the University of Kentucky ALS Multidisciplinary Clinic at Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY. 

Q: I have bulbar ALS and am troubled by an enormous amount of thick saliva in my mouth. I am using Robinul, but it doesn’t do much, and the TransDerm Scop patch didn’t help either. Mouthwashes are difficult for me to use because I can’t swish them around or spit the fluid out, since my lip muscles are weak. What else can I try?

Dr. Kasarskis: Dealing with excess saliva can be a very frustrating problem and is quite common.  It can be challenging indeed. People with ALS produce the same amount of saliva as do people without the disease. But people who have trouble swallowing eventually have difficulty swallowing their own saliva. Those of us who swallow normally are regularly swallowing our saliva without even being aware of it.  When the ability to swallow is compromised by muscle weakness, saliva builds up and causes problems like drooling or even choking. This is only made worse when the facial and lip muscles are weak, as you note.

There are several available approaches to the problem:

• Medications: So-called anti-cholinergic medications (such as amitriptyline) can reduce the amount of saliva produced. But they often have side effects: drowsiness, difficulty focusing the eyes, and excessive dryness of the mouth. Some people, especially men, also can find the drugs make it harder to urinate. And sometimes the secretions decrease in quantity but they become thicker and more tenacious, which makes them harder to cough up. It’s frequently a balancing act between reducing the extra secretions and making the mouth and mucous too dry, thereby causing other problems. Some people take an anti-cholinergic drug to dry secretions, along with another drug, such as guaifenesin, that is designed to thin secretions. But even with that combination, some people find that this is not totally satisfactory and additional measures are needed.

• Parotid gland radiation: This is reserved for patients who cannot tolerate anti-cholinergic medications.  The procedure involves focusing low-dose radiation to the parotid gland on one side. The radiation reduces the gland’s ability to produce saliva. Even one session of radiation tends to produce good results. Some people will be able to  lower their dose of anti-cholinergic medications after the procedure. Typically it takes about three to four months to see what the maximum benefit will be from the radiation.

• Oral suction devices: A low-tech solution, these devices, typically used in the hospital setting, help you remove the excess saliva as it builds up (and can also be used for oral hygiene).  A further refinement for oral hygiene is the Plak-Vac toothbrush (click here to learn more). The Plak-Vac is used primarily when brushing the teeth to remove excess secretions during the process.

• Adequate fluid intake: When you lose strength in the muscles that control your mouth, it can be harder to close your mouth tightly, and you tend to lose moisture by mouth breathing.  Thick secretions can be a sign that you are dehydrated and need additional fluid intake, probably via a PEG tube.  If you do not yet have a PEG, you should consider discussing the option with your physician.  If you already have one, you may need to increase your fluid intake through the tube.  Talk with your physician or dietician about the best options for you.

• Moisten the mouth.  Whether a side effect of medications or mouth breathing, you can moisten the inside of your mouth and tongue by swabbing with lemon glycerin swabs.  This will provide some relief for excessive dryness.  These are available from many on-line sources.

Ask the Doc: Q & A with Edward Kasarskis, MD, PhD 

Dr. Kasarskis

Edward Kasarskis, MD, PhD is Director of the University of Kentucky ALS Multidisciplinary Clinic at Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY. 

Q: Can fatigue make ALS worse?

Dr. Kasarskis: That’s actually a more complicated question than it may seem, depending on what you mean by the word “fatigue.” Do you mean the inability to sustain a muscular contraction the feeling that you can’t physically do what you used to be able to do? Or perhaps you’re referring to malaise, that “blah” feeling?

People with ALS have weakened muscles without any reserve capacity. That means the muscles are less effective, which is recognized as fatigue. You may find you hit a wall a lot sooner than you have experienced before. Typically, when you generate force in a muscle, you increase its strength by stimulating the nerve cells in the spinal cord (the spinal motor neurons) to fire more rapidly or by stimulating more nerve cells to fire. This natural process is hindered in ALS because you have fewer neurons, and therefore you will have trouble generating the force you want or need. Muscles will get physically tired sooner. Basically, we all have a physical limit and with ALS you reach your limit sooner than before you developed the disease.

You need to pace yourself and acknowledge your limits. Save your energy for what you most need or want to do. And don' hesitate to use tools to extend your abilities. Roofers use power air hammers, not hand hammers, to maximize their ability to do a job. Like them, you can use tools that will help you be more successful in performing tasks. Talk with an Occupational Therapist or a Physical Therapist about what options are available to minimize our fatigue and extend your capabilities.

State Advocacy Update
By Jerry Dawson, President

The Chapter launched a major initiative earlier this year to help maintain a $300,000 appropriation in the state budget.  The appropriation had been $400,000 annually but was cut to $300,000 in 2009.  This year, the funding is slated to disappear altogether due to the budget shortfall unless lawmakers take action to reinstate it.

Over the past two months, people who attended our Walks signed postcards to their Senators and Representatives telling them why they care.  When all was said and done, there were over 4,000 postcards mailed and thousands of calls made asking lawmakers to protect and support the ALS appropriation.  Meetings were held with key lawmakers from both the House and Senate.  These meetings included moving testimonies from PALS and caregivers.  We know that we have done all we can to protect this critical funding.  In fact, one prominent Member of the Senate congratulated the Chapter for doing a better job than any other organization of demonstrating the need, showing how the funds are well spent and making sure our message is heard loud and clear.  The campaign was orchestrated by the Chapter’s Advocacy Committee but it would not have been successful if not for the thousands of people who completed their postcards and made their calls.  The Chapter would like to thank everyone who participated in this effort.  There is no question that grassroots advocacy works.