Ebony..7

[DSCN66]

Why do we hear so much about Rob Burrows......?.What about the same level ve support ..care and finance for PSP sufferers?...My only brother has this condition .he has been accepted on a trial..with Dr.Ghosh in Southampton...it was meant to start last October.......and still now won't begin at least until April 2025.... Maybe longer How?.......It may now be to late for my brother......CRUEL on every level.

[Oumarusk]

My husband saw Dr Ghosh. His Neurologist had put in the request in February and followed up in August. He then got an appointment for the end of March to go to Southampton but I contacted the hospital and they were able to offer a cancellation slot on 28 November. My reason was that my husband's next appointment to see his Neurologist is in February and I hoped to have a report back from Southampton by then. Thankfully it happened. I was told that the Neuro Sciences appointments are only done once a month. The appointment lasted almost 2 hours so it makes sense that unfortunately one has to wait a long time to get a slot.

Perhaps Rob Burrows was able to go the private route.

[DSCN66 in reply to Oumarusk]

Thank you for your reply........my brother was referred to Dr.Ghosh.by a neurologist from Chiswick....Dr.Ghosh saw David ..in Southampton last September........where he was accepted for the trial.............and ever since it's been delayed. And delayed.......who knows now as we all realise PSP is progressive.....m

[Kelmisty]

Because MND is more widely known and celebrities have been promoting it for much longer.

This is why I tell everyone about PSP and CBD when they ask what’s wrong with my Mum. The more the word gets out the more hope for future awareness and investment I hope,

[daddyt in reply to Kelmisty]

It takes more than just one voice. Visit pspwareness.com and click on Faces and Voices in the top banner.

Tim x

[MullerRice in reply to daddyt]

I think that should be pspawareness.com

[daddyt in reply to MullerRice]

My bad. I'm surprised I missed only one letter😉

[Millidog]

Hi , I do understand you hurt and frustration, I think all of us on this site do. We are all constantly trying to support our loved ones yet we are faced daily with lack of knowledge, lack of access to specialists and support can be patchy at best because PSP is so rare and of course NHS funds are stretched. I think your post raises 3 points. With Rob Borrows, his illness MND did already have greater knowledge and awareness, and many more people with MND so greater funding ( sadly numbers count) and because of that it already had greater support through medical specialists and and charities. As a well known personality and with the massive effort of other well known rugby players to raise awareness and funds his plight and that of other MND sufferers has gained so much wider understanding, awareness, support and funding. Whilst I don't think anyone here for one minutes wishes another ill, until we gave a celebrity standing up and fighting for PSP it is likely to remain unknown to many and therefore underfunded. Sadly too, funds go to illnesses with larger numbers and in comparison PSP is rare....although the number of misdiagnosis is quite staggering and could be hiding the true picture

You mention the trial. There are a number underway at Southampton I believe and one currently looking at Atomoxetine which may help with alertness, focus, apathy etc. As a licensed drug already for adhd it may be something that can be prescribed after trial if gp agrees but it's likely trial research write up and publishing could take 2 years. So hard as it us to say and hear trials are valuable and needed but aren't the quick fix we'd like them to be. If someone feels it's worthwhile as we did its worth participating as you do feel you are doing something and you do get to see some of the team, it's useful to assess changes but I would advise it's not like a neuro consultant appointment as you mainly see research doctors going through set tests and questions rather than an opportunity to discuss individual needs.

So if your brother hasnt had a neuro consultant appointment that's what I would push for. They can be helpful in getting some guidance on how best to support a loved one with PSP and they can be helpful at referring to other services - through them my husband has had referrals to parkinsons, ot, physio, botox etc you need or helping with trying or changing different medications... eg madapor ir similar dosage, review of all meds etc and once on their list your brother may get the opportunity to see them once every year/6 months.

Hooe this is of some help xx

[Diggerandsam]

I’m a PSP sufferer myself. I can understand why you feel so, but first, may I point out that MND is a more common condition and, as such, is more likely to be in the public’s consciousness, and secondly, it’s Burrow not Burrows

[DSCN66 in reply to Diggerandsam]

I'm aware. It's a more common condition...does it really matter..that I put Burrows?.. not Burrow ..in the scheme of things. Hardly relevant...

[rocklady73]

I have wanted to ask this many times I'm in my 4th year and now wheel chair bound However I volunteered for two research projects that are connected he was famous I'm just a lowly singer