manonfire

[Manonfire]

hi,

Just joined, husband has psp for 9 years +, nice to meet you all.

[Kelmisty]

Welcome, to the group no one really wants to be in, but it is nice to know people understand and can offer advice 😊

[LuisRodicioRodicio]

Hi Manonfire!

Nine years is a lot. A lot of patience, a lot of dedication, a lot of pain, a lot of courage, a lot of experience.

Your participation enriches the knowledge of the group and will alleviate suffering.

Thank you.

Luis

[Manonfire in reply to LuisRodicioRodicio]

hi Luis, thank you for your kind words, I do not feel very courageous as I am not a natural carer and it hasn’t been easy. But if I can be of any help to anybody please feel free to contact me, I will do my best to help ….Take care😘

[LuisRodicioRodicio in reply to Manonfire]

Hi Manonfire!

Thanks for your kind answer.

We have not been trained to be caregivers. Even less to be from this complicated and hard disease. It is normal that we have the feeling that we could have done better but I am sure that all the caregivers that inhabit this chat have done and are doing the best they can. "He who gives what he has can not be asked for more".

A phrase from Anne-Heady has helped me a lot:

"Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"

(Thank you Anne!)

Hug and luck

Luis

[204010 in reply to LuisRodicioRodicio]

9 years is a very long time, I have only cared for my husband with PSP for 4 years. Feeling very selfish as I’m thinking were is my life or is this it being a carer.

[Manonfire in reply to 204010]

I know exactly how you feel, it’s a rollercoaster of emotions. I still feel as if I have been robbed of the last 9 years of my life, it’s really hard to come to terms with. I wish I had the answer. You are not selfish you are human. Have you had any support from family or friends? If you need to sound off be my guest, I will always listen…take care ..hopefully speak soon…😘

[204010 in reply to Manonfire]

Thank you for messaging me . Just knowing some one understands what it’s like. We have one son who lives in Perth Australia & have no other family. Lots of wonderful friends some understand the illness some don’t. Did manage to get my husband over to Perth last April but the journey was just a nightmare & can’t do again. It’s just the feeling totally being alone. And you have been dealing with this for such a long time. Every day things just seem to get worse & harder. This horrible illness not only changes the person who has it it changes the person trying to care. Hope to hear from you & thank you

[LuisRodicioRodicio in reply to 204010]

A phrase from Anne-Heady has helped me a lot:

"Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"

A big hug.

Luis

[timbowPSP]

Hello Manonfire, just recently I cobbled together notes about PSP, and in case these can help you I am putting them below. May make you horrified or happy. Best of luck!.....

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, Osteopath, Acupuncture ....). 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 of PSP variants, all developing at different rates, and it seems that the older you are when this PSP attacks the slower it develops. So do help ur Husband/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 (most likely using all of that wisdom which comes with it)’. So the way to speak is in a straightforward manner. Take it all day by day. I have recorded my personal experiences/suggestions as 3-A4 pages. Can splatter that all over here ..... or prefer to send you direct if you like to tell me ur email address. Very best wishes to you, with love and luck. TimbowPSP

[Manonfire in reply to timbowPSP]

hi Timbow, thank you, any information will be helpful….😀

[Manonfire in reply to Manonfire]

hi timbow, just want to say you are awesome, you have such a positive attitude it is an inspiration to all of us.

Thank you

[Motts]

Welcome to this group of understanding folk... sending hugs, Granni B

[Manonfire in reply to Motts]

hi motts, nice to meet you …hope we speak soon…take care😘

[timbowPSP]

Happy to send more info, but to ur personal email, as I requested. So pls send urs! Cheers Tim

[ncgardener799]

Hi Manonfire, I live in US and my husband also has PSP for 9 years. It is an every changing disease and lately my husband is exhibiting changes that are harder to cope with. We are managing each day and trying to navigate with support from this group and friends and family. Take care 😊