Swallowing Problems in Parkinson's Disease

Having PD Can Be Tough to Swallow

One of the common stereotypes of Parkinson's disease is the image of an old man drooling. But that image doesn't do justice to the issue because the not being able to swallow can occur at any stage of PD as the muscles simply do not respond to swallowing the 1 to 2 quarts of saliva which the body produces every day.

For long-term health we believe that a PWP should think in terms of exercise to alleviate the problem rather than go the medication route. Exercise requires more of your energy and time but may save more of you in the long run because it is safer than medication and speaks directly to the all of the related problems.

While you are waiting for the positive results of exercise you can try sucking on hard candy or chewing gum? If you have trouble swallowing these might force you to swallow. Or not. Might be worth a try. Usually it is suggested for dry mouth but since it requires a more conscious effort, it might have some value.

The first suggestion of things to do before consulting your doctor is to read the Parkinson's Disease Society article about the problem. This is an excellent article with practical suggestions. You can print it and take it to your doctor who may not be as familiar with the problem as you are.

Swallowing issues are a very serious problem in PWPs and you may need additional assistance from a Speech Therapist to assist you with exercises. You can ask your doctor for a referral. You can contact the American Speech-Language-Hearing Association for a referral in your area or contact the professional organization in your state. and of course you can contact the nearby universities with medical colleges.

According to many sources, including the Mayo Clinic, "Anticholinergic medications, such as transdermal scopolamine, can be used to decrease saliva" BUT these are not without side effects. One of these side effects is that you can develop "dry mouth" which is bad enough but it can lead to dental problems. Another significant concern is that anticholinergics are usually contra-indicated if you are taking the standard levadopa meds for PD. You can also develop some urinary issues beyond the standard PD problems. Do be advised that before you begin a symptomatic treatment such as an anticholinergic, you need a baseline cognition test because loss of cognitive skills is another side effect.

A treatment you might have read is to use atropine (eye drops) one drop on or under the tongue once or twice daily. This may avoid the adverse effects of stronger medications and still be effective. You should certainly consult your physician first about the efficacy in doing this before trying it.

If you actually treat the developing muscle rigidity, you may find that with professional therapy and/or continued exercise at home, you will not only swallow without choking but also speak more easily and audibly. You will decrease your risk of aspiration pneumonia and increase your ability to continue breathing properly.

While waiting for the day of you appointment with your internist or neurologist you can warm up with Breathing Exercises for PD: Yoga and Buteyko and Voice Exercise Will Help Parkinson's Disease, an article about an excellent DVD available from Mary Spremulli, an experienced Florida-based Speech Pathologist. Steve uses Mary Spremulli's DVD and the exercises provided at Parkinson's Focus Today with good success.

One of the experts in the field is Roxann Diez Gross, PhD, director of the UPMC Swallowing Disorders Center and assistant professor of otolaryngology at the University of Pittsburgh School of Medicine. Her contact information is provided on the chance that you live in that area.

The swallowing issues won't get better, the speaking voice will not improve, breathing and choking can become progressively worse. These problems will not go away without attention; exercise might just slow the progression and improve quality of life.

Resources:
Common Antichloringerics Speed Cognitive Decline
A study by Dr Diez Gross about similar work with COPD patients

Questions About Parkinson's Disease - Part III

Parkinson's Disease measurement scales for diagnoses and disease progression

Most of us have seen the rating scales for PD before. These are still a very significant part of the Parkinson's diagnosis and the progression tracking throughout the path of this disease. We list the Hohen and Yahr (HY) scale first because it is a way to evaluate motor impairment as well as physical disability. It also can be used to measure response to treatment.

The Unified Parkinson's Disease Rating Scale, known as the UPDRS is used to provide an assessment means for diagnosis and response to treatment. The UPDRS was revised under the sponsorship of The Movement Disorder Society. It is now known as the MDS-UPDRS. We have provided a table of areas for the MDS-UPDRS as well as links to the older and newer versions in html and PDF formats which list the measurements and the scoring. It was recently revised to be more user-friendly to patients, caregivers and diagnosticians. It appears to be getting some good reviews.

The Schwab and England Activities of Daily Living Scale should be read by family, caregivers and patients alike.

For the just curious, these scales should provide some instant recognition of Parkinson's Disease and the daily life of people with PD and their families.

Hohen and Yahr Scale

Stage one:   Mild inconvenient symptoms on one side of the body
                   only. May present as tremor in one limb
                   Friends may notice changes in posture,
                   walking, facial expression
Stage two:   Symptoms on both sides of the body.
                   Minimal impairment of balance.
                   Posture and gait affected
Stage three: Balance impairment. Mild to moderate disease.
                   Physically independent.
                   Generalized and moderately severe dysfunction
Stage four:  Severe disability, but may still be able to walk or stand
                  Stiffness and bradykinesia, although tremor may lessen
                  No longer able to live independently  .
Stage five: Wheelchair-bound or bedridden unless assisted
                 Loss of weight and muscle mass
                 Requires constant nursing care

Movement Disorder Society MDS-UPDRS  New version
                 Chairperson: Christopher G Goetz

MDS-UPDRS pdf format

UPDRS - Unified Parkinson's Disease Rating Scale 
                Old version pdf format

html format

Schwab and England Activities of Daily Living Scale (ADL)

100% -Completely independent. Able to do all chores without slowness, difficulty or impairment.

90% - Completely independent. Able to do all chores with some slowness, difficulty or impairment.

May take twice as long to complete.

80% - Independent in most chores. Takes twice as long. Conscious of difficulty and slowing

70% - Not completely independent. More difficulty with chores. 3 to 4 times longer to complete chores for some.

May take large part of day for chores.

60% - Some dependency. Can do most chores, but very slowly and with much effort. Errors, some impossible

50% - More dependent. Help with 1/2 of chores. Difficulty with everything

40% - Very dependent. Can assist with all chores but few alone

30% - With effort, now and then does a few chores alone or begins alone. Much help needed

20% - Nothing alone. Can do some slight help with some chores. Severe invalid state

10% - Totally dependent, helpless

 0% -  Vegetative functions such as swallowing, bladder/bowel function are not functioning. Bedridden

In Part V it will be time to talk about the diagnosis and treatments for Parkinson's Disease and depression

PARKINSON'S DISEASE IS NO DAY TRIP

The Journey of Parkinsons disease
In their clinical review The Journey Mary G Baker and Lizzie Graham use the analogy of the diagnosis of a disease such as Parkinson's, a chronic neurological illness, as a journey. People want to know their itinerary, what to expect so that they know how to pack. And therein lies the first problem.

According to Baker and Graham many patients find that the initial diagnosis is given in such a way that they have no idea what to do to prepare for the journey. Parkinson's is no day trip. Most PD patients find that they have to be so proactive in their treatment that they become the travel agent and not their physicians.

Yes, "physicians" is correct; not just one doctor but two or more. In the UK, NICE, the National Institute for Health and Clinical Excellence, has determined that a GP cannot give the diagnosis but must refer the patient to a specialist immediately for further evaluation. Eventually there will be blood tests or genetic tests to provide accurate diagnoses and prevent misdiagnoses. Since there is no direct access, for now diagnosis remains subjective usually through a PDRS.

There may be many professionals you will need to visit during this journey: neurologist, general practitioner, pharmacist, podiatrist, ophthalmologist, optometrist, physical and/or occupational therapists including massage and swim therapists. You may also talk to dietitians, psychologists, sex therapists, otolaryngologists or speech and hearing therapists, social workers, nurses, gerontologists.

PD is not a disease journey to travel alone if possible. Patients and their families, the caregivers have many questions. Doctors need to be able to provide those answers and to provide some direction. Baker and Graham suggest that the best way is to ask the patient what they want to know but to be prepared in case the patient is still shocked and confused by the diagnosis.

The immediate questions will be: Will I die? Can I work? How do I tell my family? Is there a cure? How will this disease affect my relationships? Will I need someone to take care of me? How does the disease progress? What medication therapies are available? Is there any surgery? Is there alternative therapy? Can I receive physical therapy or occupational therapy? What do I do now?

The first priority for your doctor is honesty. Patients need to know that treatable does not mean curable but that treatment can forestall the onset of some symptoms and make the journey far less unpleasant. After all, this is not a trip anyone chooses to make.

Patients don't need the extra-baggage euphemism that PD won't kill you. If that were reality, people and guns don't kill, it would be the bullets and the bleeding that kill you. Death rows would be virtually empty. Patients need straight talk and doctors need to have the answers or know where to find them.

A good travel agent will know that not every traveler will enjoy the same itinerary just because this journey is Parkinson's. A good doctor will understand that some patients may respond better to different routes of treatment and be prepared. A good traveler won't accept the rack rate and good patients will know that they have to voice their opinions, to ask questions and certainly to request treatment options.

It is important that the patient converse with someone who is not only knowledgeable about the journey but who can also be available for reasonable periods of time to help guide this trip. This is true in both the planning stage but for reassessments while in transit.

Concept Source: The Journey of Parkinson's disease by Mary G Baker and Lizzie Graham, BMJ 2004;329;611-614

My HD Years Part II

The Neurologist did a lot of tests to rule out things like ALS (Amyoltrophic Lateral Sclerosis or Lou Gehrigs Disease), other parkinsonian diseases like Wilson's, PSP (Progressive Supranuclear Palsey), MSA (Multiple Systems Atrophy.) The diagnosis was that I had Parkinson's Disease.

I was already taking CoQ10 for Parkinson's from reading about it. The neurologist told me to continue taking 1200 mg per day, He said if I took too much at one time my body would just piss it away. I'm still taking 600 mgs twice a day 4 years later and if I miss a dose my body lets me know. It's difficult to describe how I know except that I simply don't feel “right” and symptoms begin to recur.

When my tremor started to get more noticeable at work, about a year after my diagnosis, I spoke to my doctor about additional treatment and was prescribed Amantadine 200 mg to take in addition to the CoQ10. As are many people with a PD diagnosis, I was concerned about job security. PD falls into a legally grey area which meant that I wanted to reduce my visible symptoms as much as possible.

Although I had decided not to tell people at work that I had PD, eventually some people recognized it. Some people had relatives or friends with it. So “they” knew and moved me to a job more suited to my condition, but we didn't talk The gave me an inventory control job where I wasn't as noticeable and had regular hours. I continued to stress about job security but the inventory associate job they gave me was perfect for me to continue hiding my PD and my somewhat diminished capabilities.

By now my PD was more obvious: my left arm was very stiff, I dragged my left foot, my speech was softer and sometimes I couldn't find the words I wanted to say. I started taking Mirapex and Selegiline. Selegiline did nothing for me, Mirapex was good; I wish that I could still take it but it caused compulsive behavior which made me want to watch porn on the Internet a lot and spend too much time thinking about women. It also gave me vivid dreams and very vivid hallucinations. The hallucinations were often so vivid that it could be difficult to distinguish between reality and the hallucinations. I worried what continuing to take Mirapex would do to my mental condition.

addendum: 4/02/11
There is a new Parkinson's study using Naltrexone to reduce impulse control disorders which developed as a side effect of taking dopamine agonists:
Naltrexone for Impulse Control Disorders in Parkinson's disease.

ACCEPTING PARKINSON'S

In the beginning when I got the diagnosis that it was Parkinson’s I didn’t feel anything.
Those were just sounds that made words. They didn’t even echo in the examination room.

Then after a moment, my doctor put his arm around me and with that gesture, I realized that my life had just changed forever.

I was proactive in my treatment throughout. I started reading everything I could find about PD. I joined online communities like BrainTalk and Ask the Doctor. I became excited about every drug development that was announced. I was almost obsessive about searching for PD information, although that might have been exaggerated by the Mirapex I was taking. But despite all this, somewhere in my head a little voice was telling me, “your life is over.”

That was what I really believed. And of course there was that other voice asking, “why me?” Most of the time in the last four years since the diagnoses was official, I’ve felt depressed and angry and braindead about my situation, even though I kept on reading and posting and looking for new breakthroughs.

When the news about Isradipine came out a year ago I broke down in tears of joy thinking I was saved. I've realized recently that I was putting my life on emotional hold, waiting to not be dying.
I had stopped exercising regularly, my wife took a better job but out of state, I got fired and I now realize these things happened not because I have PD but because I stopped living my life in my doctor’s office 4 years ago.

Now I’ve got a goal to learn how to be alive again. This blog is one of my first steps. Here I will discuss ways of living with PD, new alternative treatments and I’ll report how I’m doing and what’s going on in my world and the world of PD.

I hope some readers will have suggestions for me also and maybe we can debate and laugh like there’s no tomorrow.

Permalink Comments
BREATHING TECHNIQUES FOR PARKINSON’S
July 3, 2008 at 8:36 pm · Filed under Alternative Treatments ·Tagged Alternative Therapy, Alternative Treatments