Iris Lynn Maybruck, ED.D.
When I first began working with Parkinson's patients in 1978, the particular adults referred to me had been diagnosed with PD for 10 to 15 years and were in the debilitating stage of the disease. My overwhelming observation at the time was that the majority of these patients had only been given medication ... nothing else. No referrals to therapists of any kind, or at best, maybe physical therapy, and then maybe 5 to 10 years following onset. I recall thinking if only people could be educated to take some responsibility for their own care in managing Parkinson's, perhaps they could take steps to help prevent or diminish some of the problems of the disease.
Six years ago, based on my experience with a young patient in his early forties, I began to formulate techniques to assist individuals with PD to prevent those symptoms of the disease which affect communication and swallowing from growing worse and creating major problems. In order to know how to prevent communication and swallowing from growing worse, one first needs to be familiar with how PD can affect speech, language and swallowing.
When a person has PD, communication can be affected by changes which occur in the muscles that control breathing, voice, pronunciation and rate of speech. A Parkinsonian can also experience changes in the ability to chew and swallow solid foods and liquids. Furthermore, difficulties with thinking skills, such as memory, judgement and problem-solving may occur.
Not all people diagnosed with PD experience these difficulties. However, it is wise to be educated and equipped to deal with potential problems and to work towards preventing them, rather than to try to backtrack ten years down the road, after these problems have been in existence for awhile. By that time (and I have sadly observed this more than once in patients I have been asked to evaluate), it is very difficult to help the Parkinson's patient and family members with preventing further deterioration, since considerable damage has already been done. Additionally, at that stage the patient may have experienced so many problems other than communication and swallowing difficulties that he or she is not motivated to work on these issues.
For you young people diagnosed with PD, I implore you to take action ... even if you do not have any of the communication or swallowing symptoms that can occur with this disease. And, if you notice communication or swallowing problems beginning to surface, work on them now to possibly prevent more serious problems from surfacing later.
Upon being diagnosed with PD, get a speech-language swallowing evaluation from a qualified speech-language pathologist,preferably one who has experience working with Parkinson's patients.
Depending on the outcome of the evaluation, set up a short-term therapy program (to be decided upon by you, your therapist and your physician) to provide you with the techniques needed to work on your own (with coaching periodically from the speech-language pathologist, if necessary).
Along with your daily physical exercise regime, follow a communication and swallowing program which has been set up for you by a speech-language pathologist and stick to it!
Talk to family, friends and co-workers (if you are working) and ask them to let you know how you are doing. Ask them to note any changes that may occur, such as softer voice, slurred speech, or difficulty remembering. This will help you to evaluate your status.
Be aware of how you are affected when tired - this very often will reveal itself in your communication. Your speech may become slurred. This will alert you to take time out to rest.
Join a support group. Find a buddy with Parkinson's and keep in touch with him/her on a consistent basis. Work together, coach and support each other.
Form a communication/swallowing support group, if possible. Hire a speech-language pathologist to work with a group of 5 to 15 people on a weekly or semi-weekly basis. The whole group will be motivated and will benefit.
Stay active socially, and don't be afraid to talk about the fact that you have PD. Your openness may help someone else who may also have been diagnosed with it, or who may have symptoms of the disease.
Resolve to keep your life as normal as possible. Above all, enjoy life! Have fun, laugh, travel, see movies. Do whatever it is that turns you on to life. And, for those of you who have put this off, do it now! Savor life. This will assist you to live with PD.
You can learn to cope with PD and the communication and swallowing problems that might accompany it.
Communication and Swallowing Suggestions
Ideas for Improved Communication and Swallowing for the Working Parkinsonian
If you don't feel comfortable enough to reveal to your boss, co-workers, etc. that you're concerned about your ability to communicate because of your Parkinson's, confide in a friend away from work.
If you can, tape yourself on the phone at work (if you use the phone) to note how you communicate. Then proceed to work on what you need to: using a louder voice, speaking more clearly, etc.
Take a public speaking or a voice and diction course at a local college or adult school, focusing on what you need to work on. Even if you don't have communication concerns at this time, it's a great preventative and being with the general public will be beneficial for you. You can choose to tell others why you are taking the class, or keep it to yourself.
If you have difficulty chewing or swallowing certain kinds of foods or liquids, you may want to consult with a speech-language pathologist to assist you in handling these substances both publicly and in the privacy of your home. Even if you don't have difficulty with chewing or swallowing at this time, remembering to take small bites/swallows will help prevent future problems.
Consider seeing a speech-language pathologist specializing in PD for short term work to assist you with communication and swallowing concerns in your work settings.
Vocal Loudness and Breathing Suggestions for Parkinsonians
Above all, remember to breath before talking and as you are talking.
Practice vocalizing with vowels and consonants and/or singing daily, if possible, to give your voice a good beginning every morning.
Read aloud daily, something you like to read, for 3-5 minutes, using good breath/voice coordination.
Exercise daily. This will add to your stamina, your energy, and your vocal prowess.
P, B, T, D, K, G A, A, A, A, A, A E, E, E, E, E, E I, I, I, I, I, I O, O, O, O, O, O U, U, U, U, U, U
Easy Practice Exercise - take a deep breath and exhale while saying these sound combinations.
Take a deep breath and make each sound while exhaling. Each sound can be repeated from one to three times.
A E I 0 U HUMHUMHUM N N N MAMA MA BAH TAH GAH YA YOU YAI HUH HUH HUH
Useful Practice - paraphrased from Magical Mind, Magical Body with permission from Harmony Books.
Take small bites/swallows of food/liquids.
Meats and salads may be more difficult for you to swallow. If so, you may want to request a swallowing evaluation to determine whether you have a problem or a potential one. Talk with your physician about this.
You may need to use a thickener to assist you with swallowing food and liquids. A swallowing evaluation will help determine this. Speak with your physician who, along with the assistance of a speech-language pathologist and/or occupational therapist can make this determination.
If you drool, speak with your physician. He/she may prescribe medication and/or assist you to change your sitting/lying postures. Although drooling may be neurologically associated, it sometimes can be caused by milk or milk products, chocolate, or spicy foods.
For any chewing/swallowing/drooling concerns, be sure to talk to your physician as soon as you notice problems in these areas.
In conclusion, one of the best gifts you can give yourself if you are diagnosed with PD is to learn to help yourself, with qualified professional assistance, and to take early measures to work towards preventing or minimizing communication and swallowing problems.
Helmreich, William. "Optimism, Tenacity Lead Way Back to Life." Los Angeles Times. September 25, 1992. page B7.
Help Available For Short-Term Communication/Swallowing Therapy
Check local outpatient speech-language therapy clinics in hospitals where you live.
Call The American Speech-Language-Hearing Association for local Speech-Language Pathologists in your area, specializing in PD. The phone number is 800-638-6868.
If you are homebound (only able to get out to see your physician), ask him/her for a referral to the local home health agency for short-term speech-language-swallowing therapy.
Call The Lee Silverman Center for Parkinson's Disease.Phone number: 602-981-4887 7300 East Fourth Street Scottsdale, Arizona 85251
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