The Survivor Newsletter: Winter 2000

A Christmas Wish To All our Members From The Committee

May the winter sun bring you new energies by day
May the festive moon softly restore you by night
May the snow brush away any worries you may have
May gentle breezes refresh your soul
And may tomorrow always find you feeling better than the day before

A few words from the Editor ...

Dear Members

Following a very busy time for the Group since the last Newsletter, we have lots of interesting content for you this Christmas.

Many thanks for all those who wrote and told us about their experiences when applying for Primary Medical Certificates and Medical Cards. Keep up the good work, and we will bring you information as we get it.

Since Joan, Billy and I were on the Marion Finucane Show, we have many more applications for membership and also several politicians have promised to follow up the reasons why we are not included on the long-term illness list. On page 6 You will find a very interesting article from Dr. Orla Hardiman, who is looking for volunteers for her research. If you can be of any help, please let her know.

The meeting in Portlaoise with Dr. Agre was very well attended with over 170 people there. There is a report on this meeting on page 4

So sorry to the member who phoned to say he thought my name was Ed (because I always sign my little messages at the end of articles with Ed (meaning editor)!

Have a lovely Christmas

from Paula (Ed!)

Appointment - National Administrator

We are both pleased and delighted to welcome Ms Aisling O’Leary as our Administrator. She commenced her employment with us on the 6th November last and will be working a (part-time) five-day week. As the position requires attendance at various meetings, often held at differing times, her working time will have a degree of flexibility.

Many of our members will be aware that our organisation has been operating now for over seven years on a purely voluntary basis. Now, with a professional Administrator employed, we are looking forward to the expansion of the work of our Group over the coming years. Joan our Secretary, Mary our Treasurer and I, along with our General Committee will of course be supporting Aisling in her work of carrying out the aims and objectives of our Group. Aisling will now be handling all the day to day work of the Group and will be contactable at our Head Office.

Tel/Fax. 01 873 0338 or by E-mail: info@ppsg.ie

Jim Costello, Chairperson

Dr James Agre in Portlaoise

Summing up by Jim Costello, Chairperson

We were delighted at the interest shown by our members with their large attendance at our meeting in Portlaoise on 14th October. We were also pleased to note the attendance of so many new faces that day. Approximately 170 people attended the meeting from every corner of the country, including Northern Ireland.

Some people may have found the first lecture slightly technical, others didn’t, because they particularly told me so at the interval. However, it was important for Dr Agre to indicate clearly where the advice he was giving had come from. It was not just a “medical opinion”, but was the result of a number of research projects, as shown, performed over a number of years. We are grateful to Dr Agre and the other researchers for their work in this field. We should also note and appreciate the participation of the Polio Survivors and non-Polio personnel who gave of their time and effort to take part in these projects. The results clearly show three main facts.

That an individually tailored exercise plan can, in most cases, but not all:

Increase the strength in muscles
Assist towards a longer working life
Improve the overall quality of life

Now, I know you are all going to ask where do we get an individually tailored exercise plan? Well, that is why we arranged, with the co-operation of the physiotherapists, to have Dr Agre speak at their Conference & AGM the previous day. Hopefully, the message will permeate down through their ranks from the members who were present, resulting in a better understanding of Polio Survivors requirements in the exercise field.

Then, you will ask, where and when am I going to get an appointment with a community care physiotherapist? Well, I realise most Health Boards are unfortunately hard pressed in this area, and we are regularly lobbying the Dept of Health to increase the intake of students in the physiotherapy schools. Thankfully, there is a small increase this year, which will of course take time to show results in the sector. In the meantime, we realise most of our members are paying privately for physiotherapy treatment. We may, through co-operation with other larger voluntary organisations that already provide physiotherapy services, be able to help in this respect. We will be examining this matter closely over the coming months. Jim.

TAPES AVAILABLE

For those who were unable to come to Portlaoise in October, tapes of Dr. Agre’s Lecture on Neuromuscular Function in Post Polio Individuals are available from Head Office - at a cost of £4.

Tel/Fax 873 0338

News from the North Eastern Health Board Region

Over the past year, the NEHB have been holding information days throughout the Health Board Region. There have been five of these days in total, of which Post Polio Support Group has attended three. This definitely has heightened our profile in the region and we are now known to the ‘Powers that be’ in the Disability Services. We have made various contacts with other groups at these information days, e.g. DFI, Public Health Nurses, Physiotherapists, Shopmobility and Registered Aromatherapists. Through these days we have also been able to give information which may lead to extra members. We have received media-focus in a minor way and are now known personally to the Chairman of the NEHB, Dr. Hugh Dolan. All bodes well for the future in this region.

Jackie Minnock - Regional Rep for NEHB Area.

An Investigation of the Incidence and Features of Post Polio Syndrome in Ireland

By: Dr. Orla Hardiman B. Sc. M.D. M.R.C.P.I.

We at Beaumont Hospital provide a specialist clinic for people who are experiencing new symptoms that may relate to a history of poliomyelitis. We have seen over 200 people with such symptoms, and are now in a position to conduct a detailed study of this population.

It is generally accepted that the symptoms of post polio syndrome can be divided into 2 major categories. The commonest array of new symptoms includes increased joint pain, joint and ligament instability and associated arthritis. In these people, there is no objective evidence of new muscle wasting or weakness. However, disability may be severe because of impaired or painful joint mobility. This form of post polio syndrome is a direct consequence of the “overuse” of joints and ligaments. Ligament and joint deterioration is often exacerbated by the longstanding suboptimal positioning of the joint due to polio-associated muscle wasting. This form of post polio syndrome is referred to as “musculo-skeletal” in this article.

A rarer and more sinister form of post polio syndrome is the development of new muscle weakness in previously strong limbs, with associated loss of muscle bulk and function, leading to marked disability. This form of post polio syndrome is relatively rare, although the exact incidence in Ireland is not known. It has been termed post polio spinal muscle atrophy. The cause of spinal muscle atrophy is unknown, but may relate to the ongoing loss of previously damaged nerves within the spinal cord.

Both the musculoskeletal and the neurological forms of post polio syndrome are associated with increased fatigue, increased sensitivity to cold, reduced exercise tolerance and loss of function. However, it is necessary to separate the two forms of the condition in order to successfully design potential treatments for post polio syndrome, as the primary mechanism(s) of deterioration of function differ.

Research Plan

Our overall aim is to characterise the population of patients who exhibit the late effects of polio. We have 5 main objectives

To design a method by which patients with post polio spinal muscle atrophy can be identified and differentiated from those with the musculoskeletal form of the condition.
To determine the frequency of post polio spinal muscle atrophy in the Irish population
To determine the rate of decline of muscle function in this population
To identify possible predictive factors that can be used to identify those at risk of developing post polio spinal muscle atrophy.
To determine whether the IGF family of growth factors is dysregulated in patients with post polio syndrome, and whether such a dysregulation can be associated with the neurological form of the condition.

Beaumont Hospital is the only centre in Ireland that provides a specific service for patients who had suffered from polio in the past, and who feel that they have developed new symptoms.

Approximately 200 patients with polio have been evaluated to date at the Neuromuscular Clinic. An average of 1-2 new patients per week are seen at this clinic. Of the population that has already been evaluated, approximately 10 (5%) exhibit features of new muscle weakness. The nature, extent and progression of this weakness is assessed by a clinical neurologist, and by the Dept. of Physiotherapy using quantitative muscle analysis. This provides a reliable and reproducible mechanism by which selected muscle groups can be tested and re-tested over time, to determine whether there is a significant decline in muscle strength. Twenty-two patients have been evaluated to date using this paradigm. These patients have also been evaluated by Dr. Sean Connolly, Consultant Neurophysiologist to ensure that the original diagnosis of poliomyelitis was correct, to establish a baseline EMG recording, and in the cases of suspected post polio spinal muscle atrophy, to determine whether there are electrical correlates to the decline in muscle strength.

In addition to the evaluation of people who have symptoms of the late effects of polio, the Neuromuscular and Physiotherapy Departments at Beaumont are engaged in an extensive study of 200 age and sex matched normal individuals, to determine a normal range of muscle strength for the Irish population.

Insulin like growth factor and its relevance to post polio syndrome

Insulin like growth factors I and II (IGF I and IGF II) belong to a family of growth factors that are known to be important regulators of the development of the nervous system. They can also promote regeneration of damaged nerves, and induce the growth of new muscle both in the laboratory, and when administered to patients.

A number of studies have suggested that circulating levels of one of the members of the IGF family (IGF-I) are reduced in post polio syndrome. However, the findings of many of these studies must be interpreted with caution, as circulating levels of growth hormone, which is one of the regulators of IGF, also declines with age. Furthermore, a recent study failed to demonstrate any significant difference in circulating IGF levels in post polio patients when compared to age matched normals.

Because of their potent effects on muscle and nerve regeneration, the IGF family has been tested as a possible treatment for post polio syndrome. The results to date have not demonstrated a definite improvement in the post polio population, although a positive trend was noted in one of the studies.

Our basic knowledge of the regulation of the IGF family of proteins is limited. In particular, the effects of other hormones on the regulation of IGF have not been fully addressed. The effect of a chronic condition such as polio on the regulation of “stress” hormones, and the effects of these “stress” hormones on growth factors such as IGF has not been studied. There have been no large studies that have correlated the regulation of IGF with other features of post polio syndrome, such as progressive muscle weakness and changes in the electrical activity of affected muscles.

The large size of the population that attends the Neuromuscular Clinic at Beaumont, and the existing studies that are underway, provides us with a unique opportunity to investigate the regulation of IGF in post polio syndrome, and to possibly identify a subgroup of patients that would derive benefit from treatment with IGF.

Experimental Design

Patients with a history of polio will be evaluated as usual at the neuromuscular clinic. General physical examination, neurological examination and neuromuscular examination will be carefully documented. All patients will be screened for alternative diagnoses.

Those patients in whom the diagnosis of poliomyelitis has been established will be offered 6 monthly evaluations of muscle strength using the quantitative muscle analysis apparatus, located in the physiotherapy department. Each analysis takes approximately 45 minutes. This analysis will be performed in addition to physiotherapy, occupational therapy and other assessments that are offered routinely by the neuromuscular clinic.

All patients will be offered a neurophysiological evaluation by Dr.Sean Connolly. This evaluation involved an analysis of the electrical activity within the muscles. Specific abnormalities associated with polio will be sought and documented. Patients in whom there is a suspicion of new onset muscle weakness may undergo a second evaluation to determine whether there are features that can distinguish them from the non-progressive form of post polio syndrome.

Evaluation of IGF metabolism

Patients attending the clinic will be offered the opportunity to participate in this aspect of the study. If they agree, they will be asked to provide a sample of blood, taken whilde fasting, to measure the levels of IGF within the blood. This will be repeated at 6 month intervals. Participating patients will also be asked if they wish to be included in a study to measure the regulation of IGF within the blood. This aspect of the study requires that the patient attend the hospital fasting in the morning. They will be administered a releasing hormone (corticotrophin releasing hormone) that stimulates the pituitary and adrenal glands, and growth hormone releasing hormone, that activates the IGF system. Blood will be taken from the arm at 15-30 minute intervals for analysis of IGF and the hormones secreted by the pituitary and adrenal glands.

Evaluation of IGF in muscle from patients with post polio syndrome

Some patients, especially those with post polio spinal muscle atrophy, will be asked if they wish to participate in a study in which a small piece of muscle is taken from the thigh, using a needle. This muscle will then be analysed with respect to its ability to produce and regulate the IGF family of growth factors. A portion of the muscle will be brought to the laboratory of Dr. Kay Nolan, co-investigator. Viable cells from the muscle will be extracted and grown under laboratory conditions, to study the regulation of IGF within the muscle.

Ethics Approval

This project has been approved by the Beaumont Hospital Ethics Committee. The IGF component of the study is part of a larger study, aimed at evaluating the regulation of the IGF family in neurological conditions. The three conditions that are currently being studied by our group are post polio syndrome, motor neurone disease and multiple sclerosis.

The muscle strength (QMA) part of the study is also part of a larger study, aimed at measuring muscle strength in healthy normals, and in-patients with various neurological conditions. The conditions that are currently being studied include post polio syndrome and chronic inflammatory demyelinating polyneuropathy.

If you are interested in participating in this study, please contact Dr. Orla Hardiman, Dept. Neurology, Beaumont Hospital, Dublin 9. (Email: ohard@iol.ie) for further information.

In What Part Of The Last Century Were You Born?

It has now become vital for us to know the date of birth of all our members. This is because the Government is putting finance into a number of different areas, some of which are based on the age of the one to receive it. For example, if you require a wheelchair, it will be sourced from finance supplied for your age group. This will be to our advantage most of the time. So all the Post Polio Support Group Application Forms we send to new enquirers from now on will ask for this to be entered. If our Administrator (Aisling), or our Secretary (Joan) are talking to you one the phone, they may ask you for this information. Your date of birth will be held in strict confidence.

More Famous People Who Had Polio

Supplied by one of our Members

Many thanks to Lorenzo Torchia, from Italy who wrote to tell us of three more famous people who had polio:

fLord Byron -Poet and writer of English
M. Taellyrand - An important French politician of the 1800 Century
La Gioconda - She was painted by Leonardo de Vince and this famous painting now hangs in the Louvre Museum in Paris.

Tip Of The Month - Do You Squeak?

For those who have traditional callipers or ones with plastic and a metal joint, the answer my be “YES”, and you wish you didn’t! I have found that silicone lubricant is great and it does not mark my clothes. This is the type used in the motor industry to lubricate certain parts of an engine. You can get it in a motor supply shop, and it comes in a spray can with a nice applicator so that it can be sprayed right into a calliper joint. If your squeak comes from the socket in the heel of your shoes, I find an application of Vaseline good and not as messy as oil.

Joan Bradley

POST POLIO SYNDROME-ANESTHESIA STUDY

We are collecting case histories of Polio Survivors who've had frightening, dangerous or good experiences with anesthesia. The anesthesia could have been a gas, intravenous or oral (or some combination) and used for a diagnostic procedure (such as a colonoscopy), minor surgery (such as dental surgery), laporoscopic surgery or an open procedure.

We would like to hear about the effectiveness of the anesthesia and any side effects you may have had, including:

Waking up during the procedure;
Vomiting after you received the anesthesia;
Not being able to wake, breathe or swallow for hours or days after receiving the anesthesia;
Feeling sleepy or fatigued for days or weeks after receiving the anesthesia;
The amount of PAIN you experienced after the procedure, whether you received PAIN MEDICATION and the TYPE OF PAIN MEDICATION you were given.

Please include:

Your AGE and DATES when you had the anesthesia;
The AGE at which you had polio;
If you had BREATHING PROBLEMS when you had polio, what they were and if you used a respirator or an iron lung;
Breathing problems you had AT THE TIME of the procedures (including sleep apnea and whether you were using a CPAP or BiPAP machine);
Any medical problems that might make you more sensitive to anesthesia (such as liver or kidney disease)

Please e-mail the above information (if convenient, or Post to the address below).

DON'T include any childhood surgeries where your were given ETHER.

We would also very much appreciate your mailing the ANESTHESIOLOGIST'S REPORT that describes how much anesthesia you received, the type of anesthesia you received and your response before, during and after the procedure.

All of this information will help us be better able to convince anesthesiologists and surgeons that the type and amount of anesthesia and pain medication must be tailored to the individual polio survivor and not be determined merely by body weight.

As always, many thanks for your assistance! If you're about to receive anesthesia please read the Preventing Surgical Complications article in the PPS Library:

Website: http://members.aol.com/harvestctr/pps/polio.html

Dr. Richard L. Bruno, Chairperson.
International Post-Polio Task Force and Director, The Post-Polio Institute
Englewood Hospital and Medical Center. USA.
E-mail: HarvestCtr@aol.com