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Discussion Topic  RE: Inconsistant weakness (in Open Topic) by BC Paul
As Bruce and John B have said, it seems that its not so much strength but stamina and fatigue that v......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: First Timer.. (in Spouses & Significant Others) by BC Paul
One of the most important things to bear in mind is to "Treat the Symptoms". While the blood test fo......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Spouses & Significant Others

Discussion Topic  RE: Newborn screening for NMD (in Open Topic) by BC Paul
I'm not advocating for or against, the link was sent to me as a regular monthly article. The costs ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Newborn screening for NMD (in Open Topic) by BC Paul
As this is already being discussed legislatively for other NMD's, maybe its time to start the discus......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: CPAP (in Open Topic) by BC Paul
Just a followup, am now using a foam wedge (which replicates Bob's suggestion above), but when trave......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: CPAP (in Open Topic) by BC Paul
Your comments Bob, may have been right on the mark. As part of the ongoing search for answers, I ha......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: CPAP (in Open Topic) by BC Paul
Thanks Lolo, getting rid of the machine was a joint decision. It was a trial which sent a wireless ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: CPAP (in Open Topic) by BC Paul
thanks Bob, I've gotten rid of the machine until I can be seen by a respirologist, so I am contented......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  CPAP (in Open Topic) by BC Paul
I am currently undergoing a CPAP trial (I have been diagnosed with both obstructive and central slee......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Vagus Nerve (in Open Topic) by BC Paul
Thanks for that Fisher, it seems that the Vagus nerve is involved with my most troubling symptoms, a......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Lowering CPK (in Open Topic) by BC Paul
I had been waiting for results of the exercise trial Dan, so was surprised to see they are still rec......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Curcumin / ASC-J9 and related items (in Medications and Therapies) by BC Paul
I agree with you Dan and could add other drugs too. What really bothers me is that no one seems inte......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

Discussion Topic  RE: Dutasteride; Is it working for you? (in Medications and Therapies) by BC Paul
In Dec 2012 Kenneth H. Fischbeck, published 'Developing treatment for spinal and bulbar muscular atr......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Medications and Therapies

Discussion Topic  RE: Slowing the progression of Kennedy's Disease (in Open Topic) by BC Paul
I believe there was a 'tolerability' trial of Arimoclomol for Inclusion Body Myositis which showed b......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Slowing the progression of Kennedy's Disease (in Open Topic) by BC Paul
Great news Bruce; I just finished reading the complete study, and it has some of the best explanatio......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Is Kennedy's an MND or not? (in Open Topic) by BC Paul
you may have to suffer through some event, or have your doctor or employer declare you unfit to work......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Is Kennedy's an MND or not? (in Open Topic) by BC Paul
The insurer needs a date of diagnosis, which it seems your doctor has confused with 'date contracted......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Medic Alert (in Open Topic) by BC Paul
Thanks Dan; got the card in my wallet but still uncertain what to put on the bracelet. Because it i......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  Medic Alert (in Open Topic) by BC Paul
I occasionally stumble, have been known to fall; my speech is sometimes slurred, and at times can't ......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Open Topic

Discussion Topic  RE: Vitamin D Supplement (in Food and Nutrition) by BC Paul
I too had/have a very low level of Vitamin D(39); when researching this, I came across this study, t......
Kennedys Disease Association Homepage > Kennedys Disease Community > Forums > Food and Nutrition


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