Latest on PSP

[lasquacks]

Does anyone know of anything new with PSP treatments that are valid and working? My mom has been suffering from this for years, and it went misdiagnosed as Parkinson's for many years. The PSP diagnosis makes far more sense. Anyhow, just hoping there's something new out there.

[WifeLilyRose]

My husband is late stage PSP and as far as I’m aware there are no treatments as such. I’m sure the PSPA is monitoring this constantly. For a time neuro physiotherapists can help. Likewise a good Speech and Language therapist but the awful disease will steadily progress and one is almost weekly ( daily now in my husband’s case ) having to adjust any routine that may be working. It is a never ending story… having to summarise exactly what PSP is to carers and other professionals that the patient comes into contact with.

My husband can no longer speak or see properly and does get very frustrated and bored at times in the day.

Carers generally do not engage with him and treat him as if he has Alzheimer’s.

Now we’re at End of Life stage, I realise I wasted a lot of energy seeking answers / information / getting different professionals to connect with each other. This was not going to happen. It caused myself and my daughter acute stress and anxiety which has taken its toll on our health.

My husband’s meds are being reduced and soon he will be unable to eat or drink. He decided against having a PEG several years ago. The focus now for myself and my daughter is keeping him calm, comfortable, pain free and feeling very loved. We just want this long, horrible journey to end ( and cures found for PSP and other awful neurological diseases. )

Sorry this is so long! I can reflect back now on my caring role ( over 7 / 8 years, the first 3 fighting to get a diagnosis , which I finally suggested to the consultant neurologist! ) and feel sad ….and quite angry….at how time was spent.

I live in Greater London area .

Not sure how helpful this posting is. Good luck. X

[Kasenda in reply to WifeLilyRose]

I applaud you and your daughter for all you have done caring for your husband/dad. You are so right about time wasting in trying to fight this illness. It was frustrating and it did impact my health too. I had to have 2 operations this year and having been a healthy person I put this down to the stress of caring for my husband who is 10 years into it ( he wanted PEG). I think you and I are now qualified to pass our experience to others who have just started in their PSP journey. This online group is very useful to others and also the support group where I am able to relate my experiences, so that they don’t have to waste as much time and energy. I think it’s just accepting that with PSP, there is no cure, it progresses and it’s all about symptoms management and to deal with it as it comes along. I wish someone would tell me that, at the start of my journey. All the best to you all, from someone who understands your situation.

[Hidden in reply to Kasenda]

I’m a caregiver and another caregiver suggested acupuncture, so now PSP client is going to try. She is at least several years in and now having low voice, still using a walker with much difficulty with gait belt and caregiver holding on. I think acupuncture will be a waste of time? Seeking any advice. Thanks

[Kasenda in reply to Hidden]

Dear Horseriley, I am not sure if acupuncture will do anything at all, but perhaps for your client, it gives a little hope of something being done for her. Often the fact that there is no drugs or cure for PSP is devastating for people. We all feel somewhat better having seen the doctor even if he couldn’t solve the problem. I wish you all the very best.

[ShellTaylor in reply to WifeLilyRose]

Hi! I'm new to this group. Just joined to try to help my Dad. I've been reading about Lysine, do you think it's worth a try? Or any of the other supplements that have been recommended? I relate to you saying how much time and effort you've spent to try to help and nothing is helping. It is effecting my health as well, but I'll do anything to try to help my Dad. Thank you!

[WifeLilyRose in reply to ShellTaylor]

I know nothing about Lysine, I’m afraid. My husband died of PSP last August. I totally agree with Kasenda’s response to my posting 7 months ago and reiterate the points made in her final sentences. My husband’s death was a blessed release for him but I’m still physically and emotionally suffering the effects of burnout even after six months alongside the grieving process. You must look after yourself and get all the support you can possibly get. I send you best wishes. Susanne x