Polio - The Late Effects Reality

Progression of LEP Condition

The only fact that holds true for all the respondents to the survey is that LEP is progressive and will get worse. However, how the respondents see and deal with the situation can be very different. Just as how they coped with the original bout of paralytic Polio seems to have influenced how well they managed their lives to date, so those same coping mechanisms will dictate how they will manage with LEP in its progressive form. It should also be remembered that all those with LEP are also subject to the normal ageing process and that the opinions and assessments made on the respondents are in addition to those factors that affect the population in general.

Table 34 – How do you View the Future?

How do you view the future?	Perceived status in next 5 yearsNo’s %
Will try to stay independent	186	83
See condition worsening slowly	134	60
Will manage with additional aids	116	52
Will manage current situation	110	49
Will accept potential change	98	44
Will need house adaptation	87	39
Concerned about condition worsening	78	35
Will need assistance	77	34
Do not foresee major changes	74	33
Will need further assistance	71	32
Unsure how to manage if LEP gets worse	39	17
Will need a lot more help	20	9
See condition worsening quickly	13	6
Will deal with situations as they arise	9	4
Family support is vital	7	3
Will need residential care	6	3
Do not want to think about future	5	2
Concern at loss of independence	5	2
Will seek assistance as necessary	5	2
Would like to stay independent	4	2
Do not think I have PPS	3	1
Other & Not stated	2	7

Note: These were multiple choice answers so respondents were able to voice all views.

However, the whole picture does not become clear until the detail is examined on daily tasks and how respondents viewed their abilities now, 12 months and 5 years ago. The story this tells shows the decline in daily living that can occur for those with LEP. Tables 35a - d below are merely examples extracted from the total data that can be found in Appendix B.

Table 35a -Management Rating %-Ambulant

Rating	At Present %	12 Months Ago %	5 Years Ago %
Extreme	1	1	2
Severe	0	0	0
Moderate	16	11	4
Mild	51	52	31
None	25	28	56
Does not apply	3	3	2
Not stated	4	4	4

Table 35b -Management rating %- Walking without sitting to rest

Rating	At Present %	12 Months Ago %	5 Years Ago %
Extreme	2	2	1
Severe	4	4	1
Moderate	27	17	9
Mild	42	47	28
None	14	19	51
Does not apply	5	5	5
Not stated	5	4	4

Table 35c -Management rating %- Mobilising indoors

Rating	At Present %	12 Months Ago %	5 Years Ago %
Extreme	0	0	0
Severe	0	0	0
Moderate	8	7	5
Mild	50	48	31
None	39	41	61
Does not apply	0	0	0
Not stated	2	3	2

Table 35d -Management rating %- Mobilising outdoors

Rating	At Present %	12 Months Ago %	5 Years Ago %
Extreme	0	0	0
Severe	4	4	1
Moderate	16	13	6
Mild	55	54	41
None	24	28	50
Does not apply	0	0	0
Not stated	1	1	1

Note:

• Extreme - Cannot manage at all
• Severe - Cannot manage alone
• Moderate - Can manage – someone helping/struggling on their own
• Mild - Can manage with assistive aids or appliances/altered approach

In all cases, a slow but inexorable decline can be seen. Although when looked upon over the last 12 months it does not seem dramatic, the true picture can only be envisaged when comparing the present to 5 years ago. The decline may not seem that much to the casual observer but, to those with LEP, it feels as if they have been deprived of their lives and fulfilment. To a person who has been able to get out and about without difficulty for over 30 years, now to have to plan every move, as well as ask for assistance, is a major and defining life style change. This can cause both sociological and psychological problems through feelings of isolation, ineptitude and lack of worth (Creange & Bruno, 1994).

When the respondents looked at the criticality of functional daily tasks, it reinforced the problems caused by the progressive decline demonstrated above. Table 36 below is again an example, with the main data to be found in Appendix C:

Table 36 -Criticality Rating %

Rating	Ambulant%	Mobilising indoors %	Mobilising outdoors %
Critical to daily routine	88	84	61
Usual to daily routine	3	14	25
Occasional Task only	1	1	11
Not part of any routine	5	0	0
Does not apply	0	0	0
Not stated	3	0	2

Due to the difficulties that had been identified by the respondents in their daily lives, 142 (63%) respondents at the time of the survey had already sought assistance covering a multitude of areas from transport to obtaining a ramped household entrance. Table 37 below shows the most common requests:

Table 37 –Assistance Requested by Type

Assistance Sought	No’s.
Aids & appliances	84
Medication for pain relief	59
Physiotherapy	55
Assistance with mobility	49
Private transport	36
Applied for Medical Cert.	26
Application for Disabled Housing Grant	15
Alternative therapy	7
Personal assistant	5
Massage	4
Public transport	4
Orthotics/shoes/callipers	4
Medical Card	3
Having bath and/or stairs adapted	3
Reclining chair	3
Massage chair	2
Back support for car	2
Heating allowance	1
Driving	1
Outside ramp	1
Trolley	1

Of those who had not sought assistance, 76 (34%) gave reasons and these ranged from not needing help, not having thought about it, to cost. Interestingly, given the responses that were reported in the Additional Information section, where frustration about lack of information and sources of help were reported, only 6 respondents in this section said they were unable to locate assistance or had become too frustrated in the process to carry the matter further.

Table 38a -Allocation of funds by Post Polio Support Group to aids,appliances,orthotics and adaptations

	€ 000’s
Appliances	53.0
Orthotics	1.8
Aids to Daily Living	3.0
Building Adaptatations	3.5
TOTAL	61.4

Table 38b -Allocation of funds by Post Polio Support Group to services

	€ 000’s
Physiotherapy	2.0
Respite Break	4.0
Counselling	1.0
TOTAL	7.0

However, figures from the Post Polio Support Group itself show that many, whilst not making a direct approach to statutory agencies and bodies, appear to feel less inhibited when applying to their own Support Group. The figures for the period 2002-2003 show that the Post Polio Support Group has supplied aids, appliances, equipment and services to assist the daily living needs of its members, with money raised, almost exclusively, through fundraising and voluntary donations.

As well as allocating funds directly generated through fundraising, Post Polio Support Group has administered and distributed grants, which it received from various Health Boards, to Polio Survivors for Aids and Appliances and Services. These grants have been administered at no cost to the Health Boards and have enabled Post Polio Support Group to provide direct assistance to Polio Survivors.

For Aids and Appliances, Post Polio Support Group received and distributed approximately IR£14,000 in 1998 -1999, IR£14,000 in 1999 - 2000, IR£10,000 in 2000 - 2001 and € 35,000 in 2001 - 2002. In addition, Post Polio Support Group has successfully sought and distributed Health Board grants for development services such as Physiotherapy, Counselling and Respite Breaks.