Rapid Responses to:
|
|
Rapid Responses: Rapid Responses published:
-
![[Read Rapid Response]](/icons/misc/sectionDOWN.gif)
What biomedical scientists and clinical audience have to know is not what top journals offer to read
- Alexei R. Koudinov, Natalia V. Koudinova (23 June 2002)
-
Caring for Motor Neurone Disease Patients
- John D M Wraige (25 November 2004)
|
|
|||
|
Alexei R. Koudinov, neuroscientist Berezov Academic Lab, Russian Academy of Medical Sciences, Moscow, Russia, Natalia V. Koudinova
Send response to journal:
|
The lack of the biomedical journals' coverage of the vaccination approach default indicates the unwillingness of the field (or those who shape it by authoring review articles in major journals, and by peer reviewing the articles by others) to accept the reality. This reality is an inability of amyloid hypothesis (read dogma) to explain Alzheimer's disease and to provide its' pathogenetic cure. We would like to invite readers to see our BMJ eLetters that provide extended online bibliography for the subject [ 1 ]. Do not rely on bias subject misrepresentation. Learn the alternative
viewpoint, explore and justify yourself.
Competing interests: none References: 1. Koudinov AR, Smith MA, Perry
G, Koudinova NV. Alzheimer’s amyloid dogma. A time for change. BMJ.
Published online 21 June, 2002 [ Full
Text ]; Koudinov AR, Koudinova NV. Alzheimer’s anti-amyloid vaccination
and statins: two approaches, one dogma. BMJ Published online 20
March, 2002 [ Full
Text ]; Koudinov AR, Koudinova NV. Amyloid hypothesis, synaptic function,
and Alzheimer’s disease, or Beware: the dogma is revitalized.
BMJ
Published online 15 May, 2002 [ FullText
]; Koudinov et al. BMJ. [ list
of eLetters published at BMJ ] [ Other
related eLetters ]
|
|||
|
|
|||
|
John D M Wraige, Retired Civil Servant None
Send response to journal:
|
This account is written in response to the article by L.J. Findley and M.G. Baker on treating neurodegenerative diseases - BMJ 2002:324:1466- 7. It relates to the discrepancy in perception between doctors and patients which may arise when considering which treatments are of benefit to those with chronic disabling conditions. My wife had Motor Neurone Disease (MND). This was diagnosed when she was 57, and she died 9 years later after successive, progressive paralysis of her feet, legs, back, diaphragm, arms, and hands. She would have died some 2 years earlier but was provided at that time with non-invasive mechanical ventilation which eventually was in operation continually. This intervention is likely to have contributed to her continued ability to speak, eat, and drink normally throughout her illness. However, the use of non-invasive ventilation also meant that she lived through more extensive and deeper paralysis than would otherwise have been the case. The use of mechanical ventilation is becoming more frequent in treating neurological patients who may therefore develop greater levels and durations of disability before death occurs. My wife’s problems illustrate the need to anticipate and put remedies in place early when dealing with the practical aspects of trying to maintain quality of life with MND. My wife lost unassisted mobility 4 years after diagnosis. She was able to maintain local independence through manual and powered wheelchairs and travel between locations by being driven in adapted vehicles. It was clear that this independence would not continue unless the practical problems associated with urination and defecation could be overcome. Her own suggestion for urination was that a supra-pubic catheter should be fitted. The GP recommended the formation of a colostomy to complete the package. Both suggestions were met with horror by the medical specialists on the grounds that MND does not cause bladder or bowel impairment and that a bad situation might be made much worse. After consideration of all the views put forward and recognising that there is always a case for doing nothing when elective surgery is being considered my wife decided to proceed. The supra-pubic catheter was inserted first followed about 1 year later by the formation of the colostomy. The colostomy was formed by keyhole surgery during a 3 day stay in hospital after which she had recovered entirely from the operation. After fitting the supra-pubic catheter its benefits were soon apparent as she no longer needed such frequent visits to the lavatory. The device was notably free from irritation and obstruction. It became crystal clear to my wife that the catheter and colostomy were essential elements in maintaining a reasonable lifestyle for as long as possible enabling her to go out for a whole day shopping, to visit places of interest, to take part in art classes and exhibitions, and generally to get around without obvious worries. Also, once comfortable in her wheelchair she could remain undisturbed and did not have to waste precious time with repeated and protracted transfers between wheelchair and lavatory with someone having to support her and clean her up. It was not necessary to face the unpleasant discovery that a public lavatory was not equipped for disabled users. She was also able to sleep undisturbed at night. This aspect was most welcome because, as with the wheelchair, once comfortable it was important not to change her position. It could take 30 minutes to smooth out to a sufficient extent the bedding under her skin or even her skin itself which had become loose due to loss of muscle and fat. When the disease had reduced the power and control in her arms and hands to the point where she needed assistance with changing the catheter and colostomy bags she still had long uninterrupted periods to spend at her computer or with loved ones. At this stage in her illness she found these features truly rewarding. She and those around her felt that the two interventions described were amongst the most useful provided and helped her maintain independence and happiness for far longer than would otherwise have been possible. In fact their usefulness continued up to the moment of her death which occurred tranquilly in the comfort of her home with close relatives standing by her side. A lengthy illness was predicted in my wife’s case so she felt that the two procedures described would be effective solutions to vexing problems and were worth implementing even though they did not attract the instant approval of the medical specialists. This diversity of opinion was without doubt due to looking at the same problem from two very different points of view. The specialists wanted to play safe whilst my wife faced with the definite prospect of years of increasing paralysis was prepared to take a chance. She felt that the risks were acceptably small in comparison with the potential benefits. She hated the prospect of repeated hoisting to get on and off the lavatory due to the discomfort and pain hoisting caused her. Nor did she relish the thought of repeated enemas and changes of urethral catheters. She was not overburdened with modesty by any of this but could see that it would lead rapidly to her being cocooned indoors which she felt would have had a bad psychological effect. In the event the outcome from a psychological point of view as well as the practical was really pleasing. My wife felt that she had done something beneficial which blocked the misery which would have developed if the natural progression of the disease had not been challenged. People are usually capable of balancing risk against their personal desires. In the case of a disease like MND it seems reasonable to give an individual the opportunity to evaluate as many medical appliances and interventions as may be appropriate to their circumstances and in the event of a positive request to follow it up with speedy implementation so that they can focus on those aspects of life most important to them. However, in the case of procedures which can significantly prolong life but not prevent the progression of distressing symptoms, as is the case with mechanical ventilation applied to MND, it is essential for the patient to be advised comprehensively about the immediate and future implications of the intervention, including the difficulties which may arise later in the course of the disease if, for example, the patient wishes to be weaned off ventilation. It is reasonably certain that the use of non-invasive ventilation helped to prolong my wife’s life by years rather than months. This extension to life was made much more acceptable and useful to her through the fitting of a supra-pubic catheter and formation of a colostomy. It enabled her to continue taking an active role in things of personal interest rather than being reduced to a passive observer. She felt that they were the two most useful medical procedures she had during the disease because their effectiveness was felt immediately and was sustained throughout. These procedures do not seem to be part of the standard approach by the medical profession in responding to MND and possibly to other chronic neurological disabling conditions as well. However, if my wife’s experience is taken as a measure, they are certainly the kind of thing that the patient may want. Thanks are due to the medical and nursing staff who cared for my wife and to Hilary Donovan RGN, Diploma Terminal and Palliative Care, for her kindness in reading this account and the suggestions she made. Competing interests: None declared |
|||