Psp diagnosis

[Goodact]

I live in Perth the most isolated capital in the world for ever that has been a blessing but now that my partner has been diagnosed with psp in Dec 2022 this isolation has became a curse it has been an enormous uphill battle to get any information hardly anyone in Western Australia has this disease and no one in general medical community knows anything about it I read and study all I can but like all of you here on this blog feel utter despair I want to thank everyone for suggestions and advice I have a notebook that I write everything suggested it It is a terrible disease for Ben but also for me Ì thank everyone for their advice I am going to need it on this journey

[AliBee1]

Hi Goodact. I am so sorry that you have had to join this forum but so glad that you have joined as this wonderful international family who will be of so much help to you in the future. Big hug. AliBee

[Goodact in reply to AliBee1]

Appreciate your support there is very little where I live so this place might be very important Thanks for caring

[Lara_2004]

Hi Goodact

I also have PSP and live in Melbourne. I am so sorry that you feel alone over there in Perth. There are few people with atypical Parkinsons in Australia, that being MSA, CBD and PSP.

Here in Melbourne I feel somewhat fortunate to have medical people who look to help those of us who suffer from one of these insidious diseases. I hope you can find help but in the meantime HealthUnlocked is a great source of tips. If I can be of any help please reach out.

[Goodact in reply to Lara_2004]

The medical community over here is like a drought Thank you for responding I would love any advice or personal experiences that you want to share Can you even believe such a thing like PSP exists and we have to carry it mostly on our own

[Lara_2004 in reply to Goodact]

Hi Goodact I agree it is tough trying to understand this disease, let alone finding help to try and combat it. I was diagnosed with Parkinson's, in March 2017, but found that my symptoms returned after 6 months of taking Levodopa meds, so after a merry-go-round of medications for the next 2 1/2 years I finally saw a Neurologist in early 2021 who specialises in atypical PD and lo and behold she told me the bad news I have PSP. She is an amazing woman and helps me and my husband and daughter understand what is ahead. As others point out this disease is different for everybody, however there are some symptoms that are common and I think this is why there are similarities with Parkinson's. If you could find a good PD neurologist who was interested in researching aspects of PSP, MSA or CBD this could be of benefit to you and your husband. I would be more than happy to provide you contact details if you want via personal email.

[timbowPSP in reply to Lara_2004]

Hi Lara, THere's a great little book about helping with PD called 'Stop Parkin, Start Livin' by an Oz doctor who had it himself, but can't recall his name! I am male, 81 in UK, with PSP diag 5 yrs.. Lots to tell about it, with suggestions, in 4-A4 pages. Gimme ur email and I'll send. Love and best. TimbowPSP👍

[Goodact in reply to timbowPSP]

Can I also ask for your help with this information

[timbowPSP in reply to timbowPSP]

 Lots to tell about it, with suggestions, in 4-A4 pages. Gimme ur email and I'll send. Love and best. No guarantee it'll be useful, but maybe some bits! TimbowPSP👍

[Goodact in reply to timbowPSP]

Thank you my email is [e-mail]

[Lara_2004 in reply to timbowPSP]

Hi Timbow Thanks I'd be most interested in reading whatever you have. My email address is [e-mail]

Thanks so much Lara

[timbowPSP in reply to Lara_2004]

PSP - GENERIC ADVICE Hi ..... , and welcome! I am 81, male, diagnosed 5yrs ago, and still mobile, socialising, driving, and reminding people PSP = 'Please Stay Positive'. From the start, with no positive advice available I've followed my own active routine: Targeted exercise (Pilates, etc), Diet (basically organic  Mediterranean vegetarian), Supplements (many), and Therapies (Homeopathy, Osteopathy, Acupuncture, Light therapy ....). Costs a packet, and does this all this help me? I dunno, but I feel loads better for doing it and 'taking charge'!There are about 8 variants, all developing at different rates, and it seems that the older you are when this PSP attacks the slower it develops. So for sure help ur Dad/Mum/etc do whatever is still possible, and achievable ... as TODAY may be the best day of the rest of his/her life! I understand it is on the Parkinson spectrum, and is a form of Motor Neurone. Sounds pretty horrific, and looking ahead I don't envy my carers ….. tho’ right now I am as well as I possibly can be!One of the symptoms of PSP is that speech becomes slower and more difficult to understand, but generally the intelligence remains. ‘As the illness develops mental processing becomes slower, but person still think as adult and draws on a lifetime of experience, and usually with all that wisdom which comes with it’. So the way to speak is in a straightforward manner.Take it all day by day. My personal suggestions taken from UK experience are recorded as 3-A4 pages, with much useful info …. I sent? you direct.  Very best wishes to you, with love and luck. TimbowPSP

[Goodact in reply to Lara_2004]

Every doctor specialist runs from psp but the nurses and allied rally my heart and spirit go out to them the doctors can can only diagnose but the real heroes help with end of life

[Goodact in reply to Lara_2004]

So touched to hear from you I know I am a lonely journey any help or advice along the way would be great

[timbowPSP in reply to Goodact]

I am still getting this: Address not foundYour message wasn't delivered to [e-mail] because the address couldn't be found, or is unable to receive mail. So I'm crooked! TimbowPSP

[Goodact in reply to timbowPSP]

I not sure why try mine [e-mail] 😕

[Dance1955]

hi Goodact I live in Perth too well Port Kennedy you find find more advice on here than any doctor or specialist every one is different but lots of symptoms are similar

My poor husband had the disease for 10 years I tried to make his life as normal as possible

If your partner is under 65 my advise would be to get NDIS as you will get more funding for help

we only had aged care funding which really was not enough as the disease progressed

as I am an experienced carer I managed most of the time but it was really hard

So sorry to hear your news

Hugs to you x

[Goodact]

I can only imagine or nightmare the problem with funding I am so exhausted from the paperwork and phone calls and still having to be caring for Ben...I don't think Western Australia has anything for psp it's just up to the carer.

[timbowPSP in reply to Goodact]

I have ur email as  [e-mail]... Are there really all this dots after ur name? Is the address correct? Cheers Timbow

[Goodact in reply to timbowPSP]

No dots

[timbowPSP]

Hello again Lara.Re 'Stop Parkin, Start Livin' by an Oz doctor. The name comes to mnd of John Coleman for the Oz doc. BTW PSP stands for `Please Stay Positive!' Timbow

[Goodact in reply to timbowPSP]

Thank you

[Lara_2004 in reply to timbowPSP]

Thanks Timbow I'll check him out

[Keithwell]

Hi there

My mate Jan was diagnosed with PSP in 2020 and sadly has deteriorated quite rapidly . She is now in supported living. I am in Fremantle , have learnt quite a lot as I’m one of Jans close friends and advocates. I would love to meet up and share our experiences. It’s a truly dreadful disease and I’m so sorry for both you and Ben

Not sure how, but can send you my mobile

Kindest regards

Maxine

[Goodact in reply to Keithwell]

I do feel so alone and I don't feel that the medical community in Western Australia is very well equipped for Psp I will take any help or advice you can give would love you to meet my partner he is best in the morning shall we set up at date at Two Dogs Laughing on South St coffee is on me

[Keithwell in reply to Goodact]

sure . Any day good for me except Friday

[Keithwell in reply to Goodact]

we really struggled initially too , there’s really not much out there. We have been so alone on our journey , I mean it’s NOT Parkinson’s so we didn’t feel the support there was relevant . I’m really happy there is someone in the same nightmare as us but bitterly sorry for you both . It’s a wicked cruel disease

[Gladdiegirl]

Hi there

My brother was diagnosed in October 2022 but I think he has PSP for at least 3 years. His marriage had broken down and his ex wife did not communicate with the family to advise what was going on. She just up and left. He was in Mt Isa and we were in the Sunshine Coast over 3000 klms away. I stepped down from my role as a Regional Manager in a Disability Agency to support his transition to the Sunshine Coast and access into the NDIS.

Here are my top tips.

NDIS - Complete a service access request with the NDIS. The condition is under the List of entry into the scheme. It is listed as Steele-Richardson-Olszewski syndrome. List B conditions.

Hunt around for a support coordinator that specialises in High Intensity supports.

Look at these websites - Treating Drs will need this information as this is a rare disease and not many Doctors have more than a vague passing knowledge.

pn.bmj.com

ncbi.nlm.nih.gov (this on will be really important for relaying information to the NDIS)

movementdisorders.onlinelibrary.wiley.com

Does your husband have a insurance policy for TPD. You can make claim on this. I recommend as the NDIS may not fund everything required and you may need to make co payment for some supports. Specialist Disability Accomodation may be required down the track dependent on how the disease advances.

It is daunting going into the world of support, however it gives you the opportunity to be partner and wife rather than carer. As this disease progresses you will relish this time together.

My brother is living a good life with the best supports in place for him, however I miss him terribly. I now have very one sided conversations with my new brother who acts, thinks and speaks very differently to the man I once knew. His level of cognitive impairment is quite rapid, however I am grateful for every day he is still here.