PSP Association

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PSP Success - Complementary Therapies Rock!

My PSP was diagnosed 2018.

No advice received from the medics, but I have a good GP.

Immediately I started on personal research and a regime of complementary therapies (Cranial work has been brilliantly successful) plus targeted exercises (Pilates, etc), plus specific diet (organic Mediterranean), plus Supplements.

MRI after one year was 'stable'.

First symptoms seemed very similar to those following a severe accident in 1964 when my pituitary was knocked out for 5 weeks. I believe that's when it all started, but there is no proof, so medics do not accept it!

I am 78, and my walking seems a bit more wobbly these days.

I am taking part in the UCL study of PSP, delayed but now just starting.

I keep a 'PSP diary' and have written a 3-page summary of my course of action taken. I hope this will be of interest/use to other PSP'ers, Parkinsonians, etc, so please ask me for an online copy.

Best wishes to all! TIM

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Thank you for sharing your experience. What are the main symptoms right now? And what is your age

Answers given in my report, with some symptoms. Again I am age 78, with wobbly walking and lack of sleep, mainly.

Are your eyes ok? I am asking because blurness of vision and dryness of eyes are the hallmark of PSP. If yes , how are you managing it

No prob with eyes, except[t for very long term diplopia from head accident (maybe the start of my PSP?). Cheers Tim

Just spotted ur question......... Oh, see I answered it already!

Dear Tinbow

Your wonderfully positive attitude is really commendable. Keeping active I believe is key to quality of life with PSP. My husband also enjoyed a weekly massage along with Accupuncture sessions.

Love Tippy

Hi Tippy Tealeaf,

I am Timbow (from Tim, Bowen therapy teacher), and when I was little was known as Tippy! Thanks for ur words.

Acupunct's good - i am getting Cranial Osteop or Cranio-sacral, with good effect.

There's lots more I can say, but bored with a keyboard. Gimme ur email, or a phone no, and go from there?

xxTxx

Hi Tim I recognise you. Are you the Tim that was married to Alice? I am Lis, Anja and Kelds daughter and my husband has psp. His mobility is very bad and his balance terrible. His cognition is starting to deteriorate a bit. He may be further down the line than you but he does have cranial. I was interested in what you are doing. My email is astrolis@btinternet.com

I sure am!

Last saw you I think, at Rod' birthday in the church at Pitchcombe)(?). I was with my partner Pratima, who is now officially my carer. But I am still quite independent, mobile, driving - just balance poor and wobbly walking. Sleep is crap - mostly 5hrs/night, and awake till 2-4am.

How's cranial working for (?Dave)? Martin van Zyl is cranial osteo, has helped me lots, but a bit elusive. Often perches at ancient mum local to Stroud, but now has a massive river house boat!

Meet sometime? Tim xx

PS Seems I cant attach stuff in this format. Will email separately.

I would love an online copy please. My email is robyncheers@bigpond.com

Hi Tim - I would also like a copy of your journal. Thank you for your willingness to share your PSP experience. storminondae@icloud.com

Hi. Would love a copy as well as my dad suffers from PSP. Dana.t.hicks@gmail.com. thank you!!!

Hi Tim. Firstly, I can't believe you're still driving. Like you, I'm chasing down alternative 'treatments' to manage my PSP - diving head first into neuroscience among others, with some luck. I too, keep a diary/journal... have from the beginning of diagnosis and turned it into a blog, then a book(s) The PSP Chronicles with all proceeds going to the PSPA, CurePSP and PSP Society of Canada. I would really be interested in reading what you've written. My email address is: tntbrown@rogers.com

Tim

Are you Tim too? So am I. And I lived 5yrs in BC, and was over to see 2 of them last Dec - you are over the pond somewhere?

The Regional Driving Assessment team (RDAC) here has checked me 3 times now, and recently told me I best get an automatic.

Neuroscience and brain plasticity, etc, all have an important place, especially research. But it is hands-on therapy and personal lifestyle choices that make a difference to us lot. I believe that research should be focussed much more on the variables that we CAN control.

All the best Tim

I am Tim too. I live in Ayr, On Canada. I have advocated the importance exercise from the beginning of dx. Pilates work well for me 2 and a half hours every day, so does a high protein diet with Mediterranean leanings. I get regular massage, cranial sacral therapy didn't have much effect on me, but neuroplasticity has helped stay ahead of the disease.

Keep on, keeping on - Tim

Hi, Tim, you look ageless and with a fabulous spirit! thank you for inspiring us all. I'd be interested in your copy of measures taken. THANKS so much!!! Wishing you continuous health

Hi Zibo. Yes 7 years ago I was 71 and ageless, in NZ with fab girlfriend and no probs except long term double vision! Its changed since a few years ago, and now I am wondering "how long will I take to be a cabbage" - which was predicted by a neurologist 56 years ago!

I love ur encouraging words - thanks! Send me ur email and I'll send you a copy of my (personal) recipe.

With love Tim W.

Dear Tim, I am sorry to hear about the decline. You do not look like a cabbage and also my doctors predicted for my later life that I would not be able to be standing up and I can confirm it was a lie. So let's prove them wrong! Craniosacral therapy is so gentle and powerful, and having a good diet will definitely help. I wish you all the best in your healing journey.

I sent my email address underneath my original message. I look forward to receiving your tips, even though they may be late for my mum right now. I would like to prevent it for myself if I can, as PSP runs in families )o:

Much gratitude.

Antonella

Thanks for that. You sure it runs in families - I thought not? Pretty sure mine came from an accident 56 years ago - but only flowered recently!

I'll send the info stuff next.

With love and best Tim

Cabbage? No way! That was 56 yrs ago, and after a series of Pitressin injections and 2 more weeks hospital, they let me go home! Wonderful, drugs!! Maybe that's why I've bee a therapist past 25 years. Just written a piece about my time in it. Can send you if you wish - pictures and all!

are you also a therapist? What do you do exactly? Using our journeys pf transformation to support others is a noble thing! Look forward tp receiving all your info! thanks so much

I would like to obtain a copy, please. You look great and it sounds like u are doing an awesome job trying to cover all the bases. Best wishes!

HI BOYCE,

THANKS FOR your comments, and I hope you are coping OK?

Happy to send a copy, but need ur email first.

Timbow

let me remind myself how to msg privately on this site. thx

I joined the site 2 days ago. Duuno how to msg privately on this site. Tell me...........

Hi Tim!

I'm sorry PSP has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

I am not a phisicyan.

During the 8,5 years in which we ere living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers.

I am sending to you on this private chat our experiences hoping to be useful.

Would you please to send me your 'PSP diary' ? Thank you.

Wishing the best for you and your family.

Hug and luck.

Luis

Happy to send a copy, but need ur email first, plz. Timbow

Could you send it by PSPA internal mail?

I see no way to send attachments (3 pages A4) by PSPA mail. Have only just joined this forum. Tell me more?

Above your display "PSP Success - Complementary Therapies Rock" there are 4 pictograms:

home

my hub

chat

A bell

Double click on "chat".

A document that I have sent you should appear.

At the end of the document appears "write a message"

Make a copy / paste of your 3 page document in the space

which determines "write a message"

Good luck

There are indeed 4 boxes.

Mine are HOME / POSTS / MEMBERS / ABOUT.

No CHAT !

Next step? Timbow

Look a little higher !!

Hi Tim, please could you send me a copy of your diary? My dad is suffering from PSP. Thank you!

Email: anzftmsd@gmail.com

Thanks anzftmsd. Will do!

By the way it seems like I am quite a late/slower developer PSP. How is ur Dad doing?

Wish you lots of strength, faith, and love on the journey! Timbow

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