Webinar

[Northstar1]

Hello is anyone going to join the webinar today ?

[Northstar1]

Unfortunately I could not log in and missed it

[rnpacu]

I listened. It was very well presented . The doctor was very compassionate, and informative .

Maria

[Northstar1 in reply to rnpacu]

Hi Maria do you know if the meeting will be uploaded to the internet. I so wanted to watch it. Did he talk about CBD at all and any progress that has been made please.

[Beads0122]

I listened in to the presentation. I found it very painful to hear the symptoms of CBD and the aids to address these symptoms as it reminded me of my wife who passed away last June. It was a good presentation for those who are new to CBD/PSP, however unfortunately most of you are experts on this disease through the personal experience of caring for a loved one.

They indicated that they recorded the presentation and that it would be available in the future. As soon as I get a link, I will post it here.

Bobby

[birbly in reply to Beads0122]

Missed it would like the link please

[Northstar1 in reply to Beads0122]

Thank you I was apprehensive about that aspect of the presentation. Did they speak about any advances in addressing TAU please

[Northstar1 in reply to Beads0122]

So sorry for you it us a dreadful disease. My husband has CBD hehis 55 probably had it for 4 years now

[Beads0122 in reply to Northstar1]

NorthStar,

Most definitely a dreadful disease. My wife passed away at 59. The 50s are way to young for this disease. When we looked back, we saw early symptoms about 7-8 years before her passing. Everyone seems to be slightly different. My wife was very fit and excised regularly, so it was initially cognitive sypmptoms that she noticed. This resulted in a misdiagnosis of Early Onset Alzheimer’s. We did not receive the correct diagnosis until 9 months prior to her passing, when the physical symptoms became more pronounced.

Prayers of strength, wisdom, and healing coming your way,

Bobby

[Beads0122]

NorthStar, You are testing my auditory comprehension skills! Very little of the presentation as I recall was on research and advances in that area. I had hoped there would be more. They did however refer to this site: clinicaltrials.gov (a US site, but lists trails all over the world) and encouraged looking for trials to participate in to advance the resereach on these diseases.

Bobby

[Christine47]

I appreciated the slide showing the steps to diagnosis. all starting with bradykinesia. I think more neurologists should have this so delay in correct dx could be avoided. And, yes, I believe it will be a You Tube posting in a couple of weeks. And exercise, exercise, exercise.

[rriddle]

Interesting. That was one of two slides I tried to get the MD to delete! Totally irrelevant to the topic, which was treatment.

We did not plan to cover research in the Stanford/BSN webinar. It was all about what treatments are possible TODAY.

[Northstar1]

Misunderstood or it was not clear.....just desperate to hear some good news or a breakthrough with CBD