Recent content by Paul Wicks

  1. Paul Wicks

    Does ALS cause pain?

    As others have stated, ALS can cause pain, and in fact it's a myth that persists even among professionals that it doesn't. I wrote a commentary on this a few years ago but I'm afraid it's behind a paywall. Here's an open access review: Pain in Amyotrophic Lateral Sclerosis: A Neglected Aspect...
  2. Paul Wicks

    swallowing difficulties

    While it's still early days, there was some evidence presented in Orlando that the drug Nuedexta could potentially help with bulbar symptoms including swallowing. I think a proper Phase III is still warranted but it might be worth a shot. Paul
  3. Paul Wicks

    A big bone to pick

    Dear all, Apologies for coming to this discussion late, I only just found it as I do not check in regularly. I think there has been some misunderstanding and some crossed wires. Best wishes Paul
  4. Paul Wicks

    CVS for ALS

    One of my friends in the ALS world was just at Fenway the other day to collect a big cheque from CVS for ALS research; $4.5 or so I believe!
  5. Paul Wicks

    New features for PLS patients

    Hi Geo, Our front page does say PLS, as well as ALS, and PMA. Hope that helps. Paul
  6. Paul Wicks

    New features for PLS patients

    Hi Al, you're quite welcome to post links to your site in the ALS forum, always have been! I get the feeling sometimes that you guys think there's competition between ALS sites but IMHO we provide quite different services and many of our members belong to both sites. We don't currently have a...
  7. Paul Wicks

    Right number of members?

    Hi guys, I'm preparing some slides for the ALS/MND Symposium in Birmingham on use of the internet by PALS and I'm trying to get some data on the different forums that are out there. According to the site stats at the bottom of the screen there are 7,000 members here but when I go through the...
  8. Paul Wicks

    New features for PLS patients

    Hi all, Just a quick note to say we've recently added a new feature for patients with PLS. Previously if you joined the ALS/PMA/PLS community and had PLS you didn't get the percentile curve backdrops that the ALS patients had. I'm pleased to say that now that we have 150+ PLS members we have...
  9. Paul Wicks

    Cognitive problems with ALS

    Beth, Although FTD is one possibility, there is a major factor which should be ruled out which is your respiratory function. Are you using BiPaP / NIV? Is the mask making a good fit? Any leaks in the tubes? Are you waking up with headaches in the morning? Getting a good night sleep? If these...
  10. Paul Wicks

    pseudo bulbar effect

    Pseudobulbar affect is an important symptom to recognise and treat as it can cause social awkwardness and anxiety. Someone's suggested lithium already but it may also respond to low dose antidepressants such as citalopram. If it's a real problem you might ask your doctor about a compound...
  11. Paul Wicks

    Can PLS be familial?

    Dee, Contrary to received wisdom, PLS can be familial. However from a pathology point of view, there's little that actually firmly distinguishes PLS or PMA from ALS. Pathologically, people with all these conditions have similar findings, and there's probably actually a spectrum of upper and...
  12. Paul Wicks

    PAL forgets what happens and blames me

    Elaine, As others have mentioned, ALS can be associated with a form of dementia called FTD; sadly doctors and non-profits have been slow to warn people that this can occur which means there's little good research about how to cope. One very important thing to bear in mind though is that for...
  13. Paul Wicks

    clarification/pls?

    I also think they should consider removing "family history of ALS" as an exclusion criteria for PLS. I've heard of a couple and read at least one case report. Just seems to muddy the waters... Paul
  14. Paul Wicks

    Anyone have experience with ALS and Frontal Temporal Dementia

    Dear all, the link between ALS/MND and FTD is increasingly being recognised by researchers. However, we still find that most doctors don't warn their patients its a possibility and many don't have systems in place to deal with it. We hope that will change in the coming years. ALSA have an...
  15. Paul Wicks

    carefull

    Dear all, I just wanted to drop a note to tell you about the new tool we've developed specifically to help people make up their own minds about lithium. You can use it to "filter" different patient subgroups and see what effects it has on the graph. As you can see, you get different results...
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