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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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.
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
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.
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
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.
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.
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.
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:
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
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.
Sorry for the late reply. My mother doesn't blink. And it doesn't balance.Do you have any medicine or nutritional supplements? Is there a way? I'm also curious about the skull work. I wrote it using a translator. I would appreciate your help.😃
Thanks Minsung. Where a re you? Sorry I do not sell supplements, and my Bowen treatments are only for people local to Malvern. Here is my latest PSP update.It is better to use email in future, so please send your email address! Tim Willcocks, Flat 3 St Andrews House, 38 Graham Road, Malvern WR14 2HL
IMPROVING PSP SYMPTOMS – MY PERSONAL JOURNEY Update 15 June 2021
As you may know I was diagnosed with ‘PSP’ (Progressive Supra-nuclear Palsy) in November 2018, which can affect the whole motor control system of the body: coordination, balance, gait, spatial awareness, speech, swallowing, etc. The symbol of a Humming Bird is the chosen PSP symbol. It affects the Supra-nucleus (mid brain/brain stem degeneration), there is no cure for it, and it may lead to quite fast degeneration, as compared to the related Parkinson’s disease, for example.
My GP quickly picked up on the symptoms, referred me for an MRI, and the diagnosing neurologist demonstrated the tell-tale ‘humming bird’ pattern evident from the scan. He told me to expect degeneration, a shortened life, not much longer driving, and warned against a Zimmer “as sticks are better”….. what shocking information to hear, without warning. I was dumbfounded!
Specialists tend to offer ‘worst-case scenarios’ to patients, many of whom believe them implicitly and then deteriorate faster! However I decided right away that such a negative prognosis was not my language, and sought alternatives. I found that recent medical researches, including ‘brain plasticity’ has shown that cures are on the horizon for many ‘incurable’ illnesses. There is also much that we can do for ourselves through exercise, diet and therapy.
After all, I am still an active 79 year-old, socially engaged and enjoying travel and driving.
But to be safe, I have also completed my Will, Power of Attorney and the ‘end-of-life’ stuff, etc.
Since that day I have taken steps to ‘manage’ the condition, and after 13 months a follow-up MRI in Nov 2019 showed ‘No gross changes’. This surprised my GP who had expected degeneration over the previous year, but ….. “You never quite know what to expect with PSP”.
Results from an MRI at end of Feb 2021 still show little change over 2½ years. But beware: an MRI only shows an an instant in time, and that does not always sync with what’s really going on!
‘MANAGEMENT’
- For 30 months I have had regular Cranial Osteopathy and Cranio-Sacral treatments, Homeopathy and Acupuncture. Sadly hands-on treatment has been stop-start, in line with Covid regulations.
- Plus regular weekly exercise regimes such as Yoga and Pilates …. and some swimming (last year).
- Distant healing. i.e. White Eagle Lodge, and Deer Tribe Medicine Society.
- I have changed my diet, and am being checked every 6-12 weeks by a kinesiologist for diet and necessary supplements.
This whole regime has helped me encouragingly with balance, coordination and spatial awareness, compared with Nov 2018 – but I do get very drained from only 4-6 hours sleep nightly. Recent incidents also highlight my vulnerabilities, such as handwriting deteriorating; walking and gait getting more wobbly and drunk-looking - so always a stick in hand now for stability; speech a little slurred; glugging water slower; some lapses on computer; and reduced ability to coordinate driving directions, etc.
SOME DIETARY ADVICE Specific to me, but likely to be valid for Parkinsons, Alzheimers, and some others:
Good - Loads of organic veg. Only organic cows’ milk. Very limited sweeteners : honey, molasses, possibly maple syrup, only. (Essentially a ‘Mediterranean vegetarian diet’ – Google ‘Diet for PSP’)
Bad/Avoid - Sugar and most syrups, chocolate, cheese (except cow Feta), meat, fish (except wild Alaskan salmon), alcohol, brown lentils, wheat, cream, coffee, and ‘non-alkaline’ foods, etc. Avoid processed foods. No bread except sprouted wheat, and spelt.
COST All this ‘management’ costs a packet, but I have thrown whatever is needed at it - after all, at this age if you haven’t got health, what have you got? …….. and for me: so far, mostly so good!
It is said that you can manage the symptoms, but not alter the condition …. However, recent research into brain plasticity indicates that anything may be possible!
Degeneration?
Since diagnosis in 2018 I have driven to S.W. Ireland and back – and also west Wales, flown to Dublin to meet friends, and have visited family in Vancouver. More recent adventures have been limited by Covid, and probably by my own decreased desire to travel.
Despite occasional ‘glitches’ in my progress, looking back two and a half years I feel that I have not degenerated seriously. But there is always the possibility that PSP events may start to ‘cascade’.
Caveat: “What has helped me may not benefit others.”
However ….. I did ask the cranial osteopath bloke if other similar practitioners are likely to make a difference for Parkinsons, Alzheimers, PSP, etc …. His reply was ‘Definitely YES!’
Further Comments
Little is known about PSP, but research seems to be gathering speed for this Cinderella, though hampered by lack of funds.
University College London (UCL) has commenced an in-depth study on PSP volunteers to collect and analyse developments over time. ‘Lockdown’ delayed the start of this, and my first session as a ‘remote’ (Zoom) volunteer was postponed to November 2020.
I believe that my PSP probably originated in 1964, with a near-death accident in Ireland that put me into a coma, scrambled my brain and almost incapacitated my pituitary gland forever. The symptoms back then bear strong resemblance to more recent ones, yet the specialists cannot agree with this firm belief of mine without definite evidence ….. even though it is recognised medically that head trauma can result in later neurological degeneration.
Possible Treatments
The ‘best’ treatment is different for every individual. Having been a complementary therapist myself (Bowen Technique, NeuroStructural Integration, Reflexology, etc) I have some ‘inside knowledge’. However I chose Cranial Osteopathy over Bowen/NST for myself, mainly because I can claim on my health insurance!
- Therapies. My chosen therapies and exercises target brain and body, including balance, flexibility, co-ordination, and core strength. Always best to choose your own ….. I reckon that for me the cranial work has been the most effective of the therapies ….. highly recommended!
- Diet. A good diet with minimal sugar is essential for good health. Once again we are all different, but for starters cut out those cakes and biscuits, and sugar in your tea!
Drink plenty of pure water ….. I put down at least 1.5 litres of Malvern spring water daily.
A ѕtudу frоm thе American Journal оf Clinical Nutrition ѕuggеѕtѕ that flаvоnоіd-rісh foods can help with Alzheimer’s, and several ѕtudіеѕ indicate thаt a ‘Mеdіtеrrаnеаn diet’, іn раrtісulаr, is
аѕѕосіаtеd with a rеduсеd risk оf cognitive issues (ie. PSP, Alzheimer’s, etc).
I wonder why the PSP Association* does not actively pursue lifestyle options, such as dietary, etc?
Do investigate alternatives. Specific mushrooms/fungi for example help repair brain tissue: so I am now on a course of Lion’s Mane!
- NHS or Private?
PSP is a rare condition, and often misdiagnosed as Parkinson’s, especially in the early stages.
I had an MRI scan with the NHS within a few weeks of my GP’s request, but to get a consultation and diagnosis was going to take 3-4 months. Ridiculous!
So I paid £180 to get a private appointment: money well spent. Once I had the full diagnosis I put a recovery plan into action immediately, since the medics could offer no positive suggestions.
(If you develop speech difficulties - a PSP effect - get referred ASAP to an NHS speech therapist)
PSP Contacts: The PSP Association* is based in Milton Keynes, and offers excellent help and advice. They can also advise relevant information about local support groups across the country.
Healthunlocked.com is the Association’s social networking service for health, and a very useful daily forum for over 300 rare conditions, especially PSP and CBD.
DVLA and Driving
As a driver, legally you must report your PSP diagnosis to DVLA. However I was warned that they will take you off the road right away, and ask questions later …. so I didn’t!
I went to my GP and asked to be referred to RDAC for an annual ‘Disabled Driving Assessment.’ They have passed me three times and shared results with the DVLA. So I am still driving legally.
Research, Brain Plasticity and Epigenetics
- Medical science is being re-written to show that we CAN improve the health of our brain, and that repairing damage is not only possible – but is something anyone can do. (See: ‘You are the Placebo’ by Dr Joe Dispenza, 2014 & ‘The Angel and the Assassin’, by Donna J.Nakazawa, 2020).
In Summary – if and while you are still active and able:
- Face your PSP diagnosis, and get your Will, Power of Attorney, and ‘Living Will’ sorted.
- PSP really means ‘Please Stay Positive’, so think and act as healthy as you can, and be pro-active.
- Prioritise the things you most want to get done in your life – now with a limited lifespan.
- Keep involved in life and your family. Touch, hug, and allow yourself to be hugged!
- Try out new things like learning a language, or playing chess (to keep the brain active).
- Sing as much and as often as you can (good for throat muscles, which PSP usually affects).
- Get help, including therapies and visualisation, etc. Eat well. Exercise regularly - dance if you can!
- Cherish all your positive and encouraging friends, and keep others at arms length.
- Contact the PSP Association. Check out all options that may improve your condition.
- Put a regime of Therapy/Exercise/Diet/Supplements into practice and track the changes.
- For driving it’s best to talk with RDAC (via your GP), not the DVLA.
So, take charge of your life …. don’t leave it all to the doctors and limited ‘professionals’.
You can affect the progress of your PSP journey, and my suggestions above have a scientific basis!
Thinking about the future is scary, so don’t do it much! Take it day by day and just get on with life. We are all in the boat together, and I don’t know what tomorrow will bring any more than you do!
Good luck, best wishes, and PLEASE DO PASS THIS ON – especially to anyone with PSP, CBD,
Parkinsons, Alzheimers or any other form of cognitive decline. Tim W.
I'm in Seoul. Thank you for your kind and detailed reply. There are many patients with Parkinson's disease and Parkinson's syndrome in Korea. My mother was diagnosed with Parkinson's disease and the drug Parkinson's disease in 2018. After that, several problems occurred, and after the re-diagnosis, it was diagnosed with psp. I take a lot of medicine because it is cheap in Korea. However, there are also many problems. I will write a story by email. Misdiagnosis occurs a lot in Korea, too. I wondered how other countries were living. And I found this place. I don't know if I can convey the meaning by writing with a translator. Thank you for reading it.😃
Hi Tim, your positivity is amazing. Keep it up. My mum was diagnosed with psp last year but the symptoms started a few years before. Everything seems like a battle, the care system, the hospital system. Etc.
I would be very grateful if I could have a copy of your paper so I can get ideas in how to help her. My email is alva15177@hotmail.com.
Sofy - I've emailed you with the info! But forgot to ask how ur mum and you are doing? I am now looking at putting in a wet room for the future. Or better to move out of this first flr flat first. But affordability is key. so we are in a bit of cleft stick. And my kids can't help, as not in a position. Very best wishes to you both. Where are you by the way?.... we are in Malvern, so part of the West Mids group. x
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