[Henry Kornacki]

Hi Diana

First  let me say how sorry I am in hear of yyour diagnosis. I can imagine what you are going through.  My wife first symptoms aappeared about three and a half years ago with subsequent diagnosis of ALS.

My wife has been participating in clinical trials and studies here in Australia.

In regards to exercise, I arranged for my wife to be under the care of a Rehabilitation Medical Specialist who has experience in ALS and he strongly belives in the  importance of exercise.  My wife fell late last year and broke her foot in two places. She basically couldn’t move and slept on a recliner armchair. After her foot healed she still couldn’t stand or walk because the inactivity had weakened her muscles. The Rehab specialist put her into hospital for two weeks for extensive physiotherapy exercise program and by the time she came home she was able to stand again and walk short distances.

We didn’t find our neurologist that helpful in advising us on future care.

One thing you will probably find is there is a great deal of information on ALS and much  of it is confusing and conflicting. Plus everyone is different. There are certainly a number of people out there who have lived with the disease for many, many, years. We saw three different neurologists who all told us if some of their patients who have had ALS for many years and are still going strong.

Kind regards

Henry