Story of Pat Richardson (actress)- Natl Spokesperson for CurePSP

This will likely only interest the PSP folks though everyone might like to know that Patricia Richardson (an actress who was on “Home Improvement” and a few other TV shows) is the new national spokesperson for the PSP cause.  Of course the Parkinson’s community has been greatly aided by Michael J. Fox becoming a spokesperson for the cause.  Certainly all the diseases covered by our group would be aided by some famous person being associated with them.

Dudley Moore had PSP.  Because he was diagnosed fairly late in the disease course, there was only so much he could do as a spokesperson for the cause.  And, these days, very few people seem to have heard of Dudley Moore.  (I realize knowing who Dudley Moore is “shows my age.”)

In mid-December ’06, CurePSP, the new name for the Society for Progressive Supranuclear Palsy, sent out a letter announcing that actress Patricia Richardson has become its national spokesperson.  Her father had PSP; he died in December ’05.  I had never heard of her before.  Hopefully many of you have!  She played Jill Taylor in the TV show “Home Improvement,” Sheila Brooks in the TV show “The West Wing,” and Dr. Campbell in the TV show “Strong Medicine.”  Almost a year ago I was told that things were in the works for her to become the national spokesperson.  I guess it took awhile.

I don’t know if CurePSP’s December letter went out to past donors or everyone on their mailing list.  (If you aren’t on their mailing list, you should get on it.  Go to and sign up for the quarterly newsletter.)  Enclosed with the fundraising letter was Richardson’s poignant story.  In case you didn’t see it, I’m copying Richardson’s story below.


Letter from Patricia Richardson
CurePSP Fundraising Letter
December 2007

I am honored to be the National Spokesperson for CurePSP – the Society for Progressive Supranuclear Palsy.

My father, Laurence, had PSP, and when I tell people how he died they look surprised because they have never heard of PSP. I tell them it also killed Dudley Moore and that it’s a brain tangle disease like Parkinson’s… but you can’t really explain how terrible it is. The only person I ever met who had heard of it was the producer of the hit show ER, and that’s because of his many years of involvement with medical cases. CurePSP has asked me to write my father’s story, but it’s hard to do. Like many families of love ones with PSP, my family didn’t know he had the disease for the first few years. Like many of you reading this letter, we had our hearts broken as we watched Dad struggle with this cruel and bewildering disease.

My Dad was an intelligent, proud, funny, robust, active, and athletic man with many types of arthritic injuries and health problems that disguised the onslaught of PSP. We thought of him as being an unstoppable force – a tiger. My mother was the one with the bigger health problems, and he was taking care of her because she had heumatoid arthritis, high blood pressure, congestive heart failure, emphysema, three hip replacements, hand surgery, meningitis, and strokes! Mom and Dad were married for nearly 60 years and even after her death he continued to be vital, curious, and as independent as possible. Dad died of PSP in December 2005, only three years after Mom passed away. Dad didn’t have that extra time that we had expected him to have so that he could enjoy all the things he put on hold while taking care of Mom. Dad joined my mother before she died in assisted living and was falling down a lot. We thought, at that point, that Mom was really pulling him down when she was falling. We soon realized, however, that he was pulling her down when he lost his balance. My sisters and I didn’t live near my Dad when he retired. He and Mom didn’t want to be a burden to us. As a retired Naval officer, he wanted to be near a base and chose to move near to where his brother lived. So, my sisters and I took turns going to their home each time there was a surgery, a medical problem, a crisis, or for holidays. In addition to Mom’s problems, Dad had back surgery, hip surgery, open heart surgery, and a knee replacement. Because I was a well known TV star on Home Improvement, I often got a chance to see Dad as well as get some extra attention for him during his stays at the hospital.

When I look back, I think that his heart surgery was the thing that most disguised his PSP-driven decline, especially his thought processes. I read that there is sometimes a significant cognitive loss when the patient has been on a heart-lung machine for some hours. We all noticed quite a difference in his sharpness and quick thinking. Dad was also unable to benefit from physical therapy afterwards. He didn’t walk or work out enough. We attributed his stiffness to the osteoarthritis, the knee problems, and lack of exercise. Eventually, Dad began to speak less and less, and we noticed that he was saying “that’s right” in stead of using a more appropriate response. We didn’t realize at that time that this reply was his inability to form the words; a kind of aphasia. We also had to stop Dad from giving himself, and Mom, medication fearing that he would make some terribly dangerous mistakes. My sisters and I confronted him about that and he was furious. He soon realized that he was beginning to lose his independence. How painful it must have been for Dad to have his competence challenged especially by his own daughters.

Dad was having more and more minor car accidents, mostly on the grounds of the retirement community in which he and Mom lived. One time we were on vacation and he had my son Henry in the car with him. Dad backed into a police car on a parking lot! Fortunately, no one was hurt. At that time, everyone found it pretty amusing because in retrospect, it was very early in his illness and we just thought that “Mr. Perfect” made a mistake. Increasingly though, Dad couldn’t turn his head to look around behind him, so he went through stop signs and red lights. His driving terrified Mom and the sitter when he took them on various errands. Because we now had a private day time nursing assistant, we started to get daily reports about our parents’ problems and behavior. Dad wasn’t telling us about the accidents, and Mom couldn’t tell us because by that time she had a few strokes and was incoherent. We finally learned about the accidents and Dad’s other odd behaviors from a concerned neighbor and friend.

Eventually, Dad flunked his driving test and lost his license. This made him terribly angry and depressed. We discovered, however, that he was still driving on the grounds of the retirement community. Then we had to take his car away, which only added insult to injury!

The family wasn’t getting anywhere with a proper diagnosis of Dad’s PSP, so we decided to take him to a new doctor – Dr. John Patterson, a very kind physician who worked at the clinic at the retirement home. Finally, we got some answers and help.

Dr. Patterson had a small geriatric practice and was the type of doctor you pray for; the kind that goes above and beyond to help their patients. After concluding that Dad’s medication, Sinemet, wasn’t helping him with his symptoms, Dr. Patterson diagnosed that he really didn’t have Parkinson’s disease, but actually PSP. He then sent Dad to a neurologist to confirm his diagnosis. Sure enough, Dad’s lack of eye movement confirmed the sad diagnosis. We were shocked to realize that Dad hadn’t received the correct diagnosis of PSP for such a long time and not until just two years before his death. In hindsight, he had already had the disease for several years!

In addition to taking the lead on the PSP diagnosis, Dr. Patterson also suggested a treatment called VitalStim, a form of electrode therapy. Dad was losing his speech and starting to have real difficulty swallowing. The therapy worked well and after his first treatment he was able to speak much better. We were thrilled. Dad would have the treatments as needed, but no more frequently than four months apart. Because of the nature of the treatment and how it taps into specific brain cells, a patient can’t continue to have them for long. Unfortunately, Dad slowly lost his speech again. Toward the end of his treatment, he could only speak during the actual therapy and then eventually not at all. His ability to swallow, however, continued for another year until the stroke that preceded his death.

Never in a million years, would I have imagined that my father would have put up with the difficulties of his life with PSP. Yet he did put up with it, in bed, in a wheel chair and in an electric lifting recliner. That recliner became his cockpit and gave him some sort of control of his life. He had a TV with earphones which helped him hear without the sound blaring into the room. Toward the end of his life he seemed to lose interest in watching anything. We had pictures of his family across from his bed where he could see them any time he wanted. Dad now depended on his beloved caregiver, Alice, to bathe and dress him. He loved good food and wine and now seemed satisfied with thickened juice and meat even when it was ground up. Because of the eye problems caused by the PSP, he couldn’t read, and he watched TV without his glasses, often grimacing in pain from spasms that he would have in his arms and legs. At one point, we all assumed that Dad had lost his mind due to the medications or the disease but, we realized later that he was in fact cognitive. He was a man; now very impaired and trapped in a body that had once been handsome and vital.

Although Dad benefited from a high level of personal care that many PSP sufferers do not receive, he still didn’t have an easy time of it. Our father had been the president of a major corporation, but now he was frozen and helpless in a bed. It was a terrible thing to see him looking so frightened. Often, we didn’t know how much Dad was really with us as his moods got blacker and he seemed so far away. Sometimes he’d just stare into space or sleep. We all knew that it was the terrible effects of PSP. I would fly from the west coast to be with him for a few days, but he was barely awake. When he was awake, Dad would peer at me, but he didn’t seem to know me. Occasionally, he’d laugh while listening to us talk or, while watching a movie, he’d cry at the mention of his grandchildren. Sometimes I wasn’t sure if he was laughing or crying because they sounded so much alike.

For a while, Dad was still able to use one hand although most of his body was useless or contorted in muscle spasms. Sometimes muscle relaxants controlled the spasms and we treasured that one hand that seemed to work consistently. We tried to keep it open and useable by giving him a stuffed Scottish terrier dog to hold. (I knew he would like it because it was the same dog that his mother had). When Dad could no longer speak, he would give us the thumbs up or thumbs down sign with his one good hand to tell us yes or no to the vital question such as “do you want a vanilla milkshake?” Dad had been a Naval fighter pilot and test pilot, and was accustomed, as pilots do, to giving the thumbs up when everything was okay for take off. Dad was also famous in the health clinic for his strong, sometimes even painfully firm, handshake.

I can’t tell you what a loss it was when he no longer had the strength to command that thumb to go up or down or to just shake hands. I tried to get him to blink yes or no, but Dad would just stare in the way that PSP patients often do. Dad had a stroke when I was shooting an episode of The West Wing. Coincidently, it turned out to be the episode during which John Spenser (one of the actors on West Wing) died. I flew to Virginia to see Dad and soon learned that he was unable to swallow. We decided not to insert a feeding tube. Our decision was based on Dad’s medical directives and the fact that his health had so deteriorated in the last month. He had lost 20 pounds and the doctors said it was clear that he was near the end of his life. Dad had reached that part of the disease where he slept most of the time and was hardly eating. We felt that a feeding tube would really be prolonging his struggle and not improve his quality of life. Dad could no longer receive medication by mouth since he couldn’t swallow so he was provided with an intravenous tube for hydration and to make him comfortable. His serious lung problems were soon to follow, but I will spare you the painful details.

I flew back to the Los Angeles to finish an episode of The West Wing while my sisters stayed with Dad. They expected him to live for a few more weeks. When I came back east my sisters and I ended up sleeping in Dad’s room and staying with him around the clock for four nights. We slept with one eye open to watch him and listened to his breathing. We petted his brow and held his hand. We played guitar music for him as he had played the guitar for us as children. We talked to him, gave him permission to go, laughed and cried, prayed and waited. Dad gradually slipped into a coma but seemed to be aware of our comforting presence.

Alice, his caregiver, and the nurses who came in and out of his room explained to us what to expect in the process of dying. People are usually afraid to talk about death, but after this experience, I think that I am less afraid to talk about it. The more the nurse talked to us about what was going to happen, the less frightened we became. My sisters and I had been coming to the retirement community for years to visit our parents so we were all well known by the staff there. They brought us coffee and muffins in the mornings and blankets and pillows at night. Dad’s wonderful doctor – Dr. John Patterson had also become our friend and cried with us when he died. He had known and cared for both Mom and Dad for years.

We donated Dad’s brain for research to the Eloise H. Troxel Memorial Brain Bank supported by CurePSP, at the Mayo Clinic in Jacksonville, Florida. They confirmed the diagnosis of PSP. The areas of his brain that were most affected caused severe damage to motor areas in the brain. I found this so sad and wondered what did Dad do to deserve this kind of death? Why did he have to have such a tragic final chapter? But more importantly, what can I do now to help prevent others from suffering with PSP? What can we all do?

I hope that you will join me in the fight against PSP. CurePSP (Society for PSP) funds research and provides outreach and education to families dealing with PSP every day. It educates physicians and healthcare professionals worldwide on PSP diagnosis and symptoms. It was CurePSP’s website where I first found knowledge about my father’s disease. CurePSP receives no government funding and is solely dependent on gifts from generous people just like you. Please send in your gift today to help CurePSP’s vital programs and services.

I am looking forward to helping CurePSP through my involvement as the national spokesperson, in public awareness campaigns, guest appearances and much more. Please, join me in our fight to find a cure for PSP while we help those affected by this terrible disease.

On behalf of all those affected by PSP, and in memory of my Dad, Laurence Richardson, I thank you for your support.

Together, we will find a cure.

Warm regards,
Patricia Richardson
National Spokesperson

Gastroparesis – Symptoms, Evaluation, and Treatment

Gastroparesis, or delayed gastric emptying that causes bloating, regurgitation, and early satiety, can be a problem in the neurodegenerative disorders in our group, especially in MSA and LBD. Gastroparesis can lead to weight loss and dehydration.

One gentleman in our local support group with a clinical diagnosis of MSA but a pathologically confirmed diagnosis of LBD had gastroparesis.  It was the worst symptom he had.

Online friend Vera James posted to an MSA-related Yahoo!Group a link to a terrific article on gastroparesis.  Here’s a link to the article, available at no charge:

Motility and Functional Disorders of the Stomach: Diagnosis and Management of Functional Dyspepsia and Gastroparesis
Practical Gastroenterology
December 2006
by John M. Wo and Henry P. Parkman

See pages 37-45 especially.

The section on “Treatment” is particularly good. These points are discussed in detail:

* eating smaller, more frequent meals

* relying on liquid nutrient

* limiting fatty foods

* avoid salads, raw foods, and red meat

* antiemetic medications.  “The most commonly prescribed traditional antiemetic drugs include promethazine and prochlorperazine.”

* prokinetic medications such as metoclopramide, domperidone (not available in the US), and erythromycin.

* botulinum toxin injection

* gastric electrical stimulation

* jejunal feeding, rather than PEG feeding

I’ve copied below the “Gastroparesis Cardinal Symptom Index.”



Table 4.  The Gastroparesis Cardinal Symptom Index
1. Nausea (feeling sick to your stomach as if you were going to vomit or throw up)
2. Retching (heaving as if to vomit, but nothing comes up)
3. Vomiting
4. Stomach fullness
5. Not able to finish a normal-sized meal
6. Feeling excessively full after meals
7. Loss of appetite
8. Bloating (feeling like you need to loosen your clothes)
9. Stomach or belly visibly larger

Each symptom is graded by the patient on a 0 to 5 scale: 0=none; 1= very mild, 2=mild, 3=moderate, 4=severe, 5=very severe.

From Revicki DA, Rentz AM, Dubois D, Kahrilas P, Stanghellini V,  Talley NJ, Tack J. Aliment Pharm Ther, 2003;18:141.

LBDA on Surgery/Anesthesia

I saw this second post last week by Angela Taylor, the president of the Lewy Body Dementia Association, in a couple of places. She mentions these medications for which I’m adding the brand names (in parentheses): donepezil (Aricept), rivastigmine (Exelon), and galantamine (Razadyne, which used to be called Reminyl).


Anesthesia and LBD
Posted by: “jaektaylor”
Date: Thu Jan 11, 2007

We’ve all talked about how our loved ones respond poorly to most
anesthesia. The following verbiage is going to be included in the
next version of the LBDA’s informational pamphlet. Here it is for
you, before it’s even ‘hot off the presses!’

“When considering any surgery, caregivers should meet with the
anesthesiologist in advance. People with LBD often respond to certain
anesthetics and surgery with acute confusional states (delirium)
and/or may have a precipitous drop in functional abilities which may
or may not be permanent. The pros and cons of stopping donepezil,
rivastigmine, or galantamine should be carefully considered. If a
spinal block or regional block can be used instead of general
anesthesia, this would be preferred as those methods are less likely
to result in postoperative confusion.”

LBDA on Excessive Daytime Sleepiness + Use of Provigil

I saw this post last week by Angela Taylor, the president of the
Lewy Body Dementia Association, on the LBDcaregivers online
discussion group. The topics are excessive daytime sleepiness and
the use of the medication Provigil.



Treating excessive daytime sleepiness/Provigil
Posted by: “jaektaylor”
Date: Thu Jan 11, 2007 6:02 am ((PST))

….The LBDA’s Scientific Advisory Council is also writing a short
overview on the issue of excessive daytime sleepiness, and the use
of psychostimulants like Provigil. The paper isn’t ready for
release to the public yet, but here are a few things that I’ve come
to understand as a lay caregiver that may be of help.

1. The use of psychostimulants does not appear to be a common
treatment in LBD, and should be done with caution. A neurologist
who specializes in sleep disorders might be the best person to
manage this type of medication.

2. There are a number of reasons that patients may experience
excessive sleepiness, which should be addressed BEFORE considering
using psychostimulants, like depression, delirium, inactivity, etc.

3. With the use of psychostimulants, there are some risks of
increased psychosis in some patients. Fluctuating pulse and blood
pressure and falls is also a risk.

4. A full sleep evaluation is recommended before using
psychostimulants to address what other sleep disorders may be
contributing to the problem, that wouldn’t be resolved by the use of
a psychostimulant.

Hope that helps,

“Speech and swallowing in MSA and other autonomic disorders”

This article on “Speech and swallowing in MSA and other autonomic disorders” will certainly be of interest to the MSAers but some of the questions/answers will be of interest to everyone (especially #1, #7, #8, #9, #12, and #13). (My dad, with PSP, has many of the problems indicated.)

The Sarah Matheson Trust is a UK charitable organization focused on MSA. The Trust’s newsletter, SMarT News, had an article last year in which “speech and language therapist Tricia Gilpin report(ed) on the presentations of speech and swallowing problems and the therapists role in treating people with MSA.” Here’s a link to the Winter ’05 issue of the newsletter:
Editor’s Note: Link no longer available

There was one surprising sentence in the article: “It is important to realise that exercises will not improve the speech.” I thought that was the whole point of speech therapy. Other than that one quibble, I thought the article was a good introduction to what speech/language pathologists (our term in the US) do and what kinds of speech and swallowing problems there are with these disorders.

A copy of the article follows (note that the numbers in front of the questions were added by me).



Speech and swallowing in MSA and other autonomic disorders
by Tricia Gilpin
Senior Speech and Language Therapist
SMarT News, Winter ’05 Issue, November 2005
Sarah Matheson Trust newsletter

#1 What does a Speech & Language Therapist do?

Speech and Language Therapists are involved with both children and adults
with many different types of disorders. These include developmental difficulties,
stroke, head injury, brain tumours and many different degenerative neurological diseases.

The SLT will see patients with any of the following problems:

* Dysarthria: a motor speech disorder, where there is loss of function or co-ordination in the breathing mechanism, or in the lips, tongue or soft palate

* Dysphasia: a disruption to the language centre in the brain which may affect understanding of the spoken word, spoken output, reading & writing

* Dysphonia: the loss of the voice due to physical or psychological difficulties. This must always be checked by an Ear, Nose and Throat specialist to eliminate the possibility of structural damage to the larynx

* Dyspraxia: a motor speech programming disorder. There is no loss of movement in the lips, tongue or soft palate, but the messages from the brain to them
becomes disrupted

* Dysphagia: this is a disturbance in the process of swallowing. A person
with dysphagia may report any of the following signs:
– difficulty with hard, dry foods or mixed consistencies
– problems with thin liquids
– coughing and choking when eating and drinking
– food becoming stuck in the mouth or falling out of the mouth
– extended meal times
– excessive saliva and/or dribbling
– having a ‘gurgly’ voice after mealtimes or drinks
– difficulty opening the mouth sufficiently
– weak cough
– weight loss
– chest infection

* Tracheostomy: SLTs also work with patients who have a tracheostomy.

#2 Classification of Multiple System Atrophy

There are three different aspects to MSA:

* Parkinsonian or Extrapyramidal signs
* Cerebellar signs
* Autonomic Impairment

The disease can present in any of these three ways, or often as a
combination of two or three of them. The speech and swallowing
characteristics of the patient will vary according to the clinical picture, and
may change over time. 

#3 What speech characteristics should I expect if the presentation is mainly Parkinsonian?

This type of MSA is now called MSA-P. The type of dysarthria seen in
Parkinson’s Disease, and in MSA-P is called hypokinetic dysarthria. This is
characterised by:

* festination of speech — that is difficulty getting started and then
speech coming out in a rush

* quiet speech

* slow and hesitant speech

* speaking in a monotone and at the same pitch

#4 What should I expect if the presentation is mainly Cerebellar?

This used to be called Olivopontocerebellar Atrophy but is now called MSA-C.

This type of MSA involves the cerebellum and brain stem and the type of dysarthria seen is called ataxic or cerebellar dysarthria. This is characterised by:
* staccato (or chopped up) speech 
* imprecise consonants
* slow and slurred speech

Unfortunately, this type of dysarthria can make you sound as if you have been
drinking too much alcohol. 

#5 What if it is the Autonomic Presentation?

The third type of MSA is the predominantly Autonomic presentation where the patient often has postural hypo-tension. This may lead to general feelings of dizziness and exhaustion and you may not feel very much like talking at all.

A drop in the blood pressure can result in a decrease in the volume of the speech.

#6 Spastic Dysarthria

In addition some patients present with a spastic dysarthria where the speech is
characterised by:

* imprecise consonants
* strained or strangled voice
* quiet voice

It is important to remember that speech characteristics in MSA can be mixed
between the different types of presentation and therefore the different types of dysarthria.

A research study by Kluin et al in 1996 looked at 46 patients with MSA
and looked at the speech characteristics and concluded that:

* Hypokinetic components predominated in 48%
* Ataxic components predominated in 35%
* Spastic components predominated in 11%
* the remaining 6% were mixed dysarthria

#7 What can the SLT do to assess my speech and communication?

The SLT may decide to do a formal dysarthria assessment. This consists of
looking at the different aspects of the speech process:
* respiration (breathing for speech)
* phonation (production of sound)
* movements of the facial musculature
* prosody (intonation patterns — the ability to change pitch in speech)
* articulation (ability to produce clear sounds)
* intelligibility

Alternatively, the SLT may assess you in a more informal way by talking to
you and to your family. 

#8 What can the SLT do to help me with my speech and communication?

Unfortunately, there is no cure for the speech difficulties experienced in MSA but the SLT can help by giving information to the patient and to the family.

Many people with MSA experience other difficulties with their communication in addition to the speech.

* many people experience a lack of facial expression

* others find making and maintaining eye contact difficult

* some may have a forward head tilt which hampers communication,
feeding and vision

* others will have displays of inappropriate laughter or crying

* some people have difficulty switching attention from one topic
to another

* some people will experience a low mood

Often it is helpful just to be able to discuss these matters and try to find a way, with the therapist, to manage these difficulties. It can be helpful to discuss
ways to avoid very noisy situations, or to cut down on background noise when
trying to communicate (even turning off the TV can be helpful).

For the family and friends of the person with MSA it is important to try to make time to communicate, even though the process may be slower than previously. It is often helpful to be able to watch the face of the person to help with understanding and to ask for repetition in a different way if something cannot be understood. It is important not to pretend to understand if you have not, and to ask for clarification.

#9 Will the SLT give me exercises to do to improve my speech?

It is important to realise that exercises will not improve the speech. However,
sometimes the therapist will decide to focus on a particular aspect of the
speech mechanism to try to maintain and preserve speech for as long as
possible. It may be helpful to work on:

* exercises to improve facial expression

* breathing exercises to maintain an adequate respiratory drive for speech

* relaxation exercises to reduce tension in the muscles used for

* voice exercises to maximise volume

* speech exercises to improve overall intelligibility and fluency

#10 Are there any Communication Aids for people with MSA?

* some people find that a small speech amplifier can be helpful

* there are other communication aids such as Lightwriters which allow the
patient to type out their message and the machine talks for them

* some people prefer to use a pen and paper if they are finding speech

#11 I have heard that sometimes people with MSA need to have a
tracheostomy. Is this true?

Unfortunately, some patients with MSA may experience difficulty opening the
vocal cords in the larynx sufficiently to allow the normal amount of airflow.

This may be due to vocal cord palsy and can result in:
* excessive snoring
* inspirational stridor — a sound like snoring but on the ‘in’ breath
* sleep difficulties and vivid dreams
* breathing problems, particularly at night
* sleep apnoea, where the person stops breathing for a short time during

In extreme cases the ENT surgeon may recommend a tracheostomy. This is a
small tube which is fitted into the neck below the level of the vocal cords,
allowing the patient to breathe comfortably.

The Speech and Language Therapist can assist in advising whether or not a
speaking valve is appropriate.

#12 What happens to the normal swallow in people who have MSA?

The normal swallow is made up of 3 stages:
* the oral stage
* the pharyngeal stage
* the oesophageal stage

All three stages of the swallow may be disrupted in MSA. A research study by
Smith & Bryan in 1992 looked at ten patients with MSA and found the

Oral stage:
* 90% had decreased control of what was in their mouth
* 40% had poor tongue movements

Pharyngeal stage:
* 80% had a delayed swallow
* 100% reported the feeling of ‘something stuck in the throat’
* 30% experienced ‘silent’ aspiration — where food or drink goes ‘down the
wrong way’ and enters the lungs, but the patient does not cough

Oesophageal stage:
* some patients with MSA or other types of autonomic dysfunction
experience dysmotility of the gut
* this can result in constipation but also in dysmotility of the
oesophagus with patients reporting a feeling of ‘something stuck’ in the
centre of their chest

#13 How will the Speech and Language Therapist assess my swallow?

The SLT will start by taking a full history of the disease process and also
of the eating and swallowing problems from both the patient, and if possible,
from the carers.

The SLT will then probably complete the following assessments:

* a ‘bedside’ assessment of the swallow including:
– assessing the cranial nerves of the patient, looking at the functioning of the face, tongue, lips, soft palate etc.
– trial the patient on various foods and drinks, observing their ability to cope with different consistencies

* possibly perform a videofluoroscopy (this is a moving x-ray of the swallow which is filmed onto video). This shows the safety and assist the therapist in making recommendations regarding:
– appropriate consistencies of food
– positioning
– possible modifications to the diet

It may be that the SLT, in consultation with other members of the multidisciplinary
team, may suggest a PEG.  This is a Percutaneous Enderscopic Gastrostomy which is a small tube which is passed directly into the stomach to allow the patient to be fed with liquid feed, should this become necessary.

A PEG is often used in conjunction with continuing to eat and drink. It may
be that the patient is finding eating and drinking very time consuming, slow and
difficult and may find it much more pleasurable to get all the necessary
hydration and nutrition through the PEG leaving the opportunity to eat and/or
drink small amounts for pleasure.

#14 The Multi-Disciplinary Team and the Speech and Language Therapist

The SLT may discuss a number of complex issues with you regarding your speech and swallowing and also have discussions with you regarding the placing of a PEG tube or a tracheostomy.

It is important to remember that any complex decision that has to be made will always be after joint discussion between members of the MDT, the patient and his/her family. The MDT may include the Neurologist, the GP, the clinical nurse specialist for MSA, other nurses, the dietician, the physiotherapist, the occupational therapist and the speech and language therapist.

In the discussions regarding the placement of a PEG or a tracheostomy it is vital to allow time for discussion with the patient and his family and to take into account the individuals right to make decisions about his or her quality of life.