gastronomy tube . . .
 

I remember a paper referring to a study in Scotland regarding the gastronomy tube and very high death rate of 25% and then remembered the Scottish games, wherein one event involves individuals tossing around telephone poles. The higher death rate might well be linked to larger size of Scottish people, though the report might not have indicated same. Never the less, as I would suggest, not only should ALS patients tone down the jogging, avoid, too, the caber toss until an ALS cure is found and you have full recovered.

Caber Toss
Scottish Heavy Athletics - Caber Toss

old news story . . . note comment at end of story
 

Diaphragm Pacing May Be Harmful in ALS

Diaphragm Pacing May Be Harmful in ALS | Medpage Today

Brief update on 'whole' set of cases . . . about 160 . . .
 

At least 100 cases reached more than the upper level life expectancy; forty-seven continue to be approaching but many of these are without a contact in quite a long time. Seventy-four have been discovered to have passed away. Many cases remain without complete data for complete analysis. At least 67% or two-thirds of the patients whom I have found providing data on the web have exceeded the upper level life expectancy where only about 20% were expected to do so . . . thus much bias must be found in order to challenge the efficacy 'claim' this set is representing. The more recent cases seem to be doing better . . . possibly because patients obtain their implant nearer the optimal point in the disease's course. We should remind ourselves the symptoms may belong to more than one actual disease and plausibly the pacer doesn't help with every one of them. Further research is needed to find 'fault-lines' to help us ascertain the basis for benefit and, if there are case types the treatment will not benefit then how to detect them, especially if there are cases where the treatment might cause harm.

Sorry to have been away for a while; unexpected circumstances. Priority one is updates. . . .

Operative Range of Diaphragm
 

Given your FVC, how 'healthy' must your diaphragm be in order to be pacer-eligible?

Operative Range


This is quick edition of table I continue to be working on.

Note: the diaphragm may be in any condition from 100% to 0%, fully to unresponsive to simulation in the 85% - 45% FVC range authorized for consideration of pacer implant.

Barriers of the bureaucracies . . . news soon . . . .

New Chart . . .
 

{not to scale}

Hypothetical Benefit

Patients need data tsunami . . .
 

Note Figure 1 of

Noah Lechtzin, MD MHS

Respiratory Effects of Amyotrophic Lateral Sclerosis: Problems and Solutions

http://www.aamr.org.ar/secciones/kin...tos_respir.pdf

shows about five to ten data points per patient in Figure 1, but dEMG technology is the most promising method of today:

Onders, et alia's Figure 1 of:

Identification of unexpected respiratory abnormalities in patients with amyotrophic lateral sclerosis through electromyographic analysis using intramuscular electrodes implanted for therapeutic diaphragmatic pacing

http://www.americanjournalofsurgery....598-4/fulltext

promises megabytes . . . and may well produce medical science basis as good as or maybe even better than biomarkers. :Wheel:

New hypothetical benefits spreadsheet shows diaphragm ranging data; the pacer may enable advancement in the scientific understanding of respiratory muscles, allowing more general deployment of the treatment in medical research - Barbara Brenner advocated unsuccessfully for. When clinical trial protocol is established, getting live change to be made thereto is very difficult, if not impossible because of potential legal repercussions due to non-perfected assessments of risks to patients and sponsoring organization(s). There may be some chance of permitting the involvement of some of these type of patients in every new clinical study but advocacy is likely needed. Essentially such was where Barbara Brenner's (BBZinger) efforts were going. "Per protocol" keeps risks in the 'channel,' violating protocol can disrupt the legitimacy of the clinical trial. Such risk can be very difficult to assess.

The orange highlight is added because I discovered, in 'my' downloaded version of the DiPALS trial report patient FVC needed to be 75% or less in order to be admitted to the trial. Thus twenty-five percent of the eligible patients per the FDA protocol were not allowed to enter the trial. The twenty-five percent excluded tended to be the strongest candidates. Of course this would have an considerable negative impact on the summary statistics for the trial.

Hypothetical Benefit

Resistance may continue to be experienced by pacing patients in participating in trials but there is likely no scientific legitimacy thereto because such patients would likely help the clinical trail obtain early indication of trial's sought after result, especially if the impact of ALS on the respiration muscles is studied to the point of perfecting such knowledge.

I have not received news from any patient regarding use of creatine and pulmonary pacing . . . creatine has not been helpful to ALS patients but might be helpful to pacing ALS patients.