PLEASE STAY POSITIVE = PSP best advice
IMPROVING PSP SYMPTOMS – MY PERSONAL JOURNEY Update 14 March 2022.
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 PSP symbol.
PSP affects the Supra-nucleus (mid brain/brain stem degeneration), there is no cure for it yet, and it may lead to quite fast degeneration, as compared to the related Parkinson’s disease, for example.
Overall I am still positive and upbeat, but physically must admit that I am just not as good as I was!
Here’s a synopsis:
I take a stick with me out to walk: a year ago it was ‘just in case’, now it is essential for wobbliness and to prevent falls. Also I test myself by walking to the nearest shop, 100yds uphill (quite steep) …. Non-stop is a good day, 1 stop for breath is OK, and 2 stops is poor. The Post Office, about 500 yards uphill, is near impossible on a wet, cold, arthritic day!
Brain function, memory and speech seem relatively unaffected, though my thought processes and multi-tasking are both getting a little slower or frayed.
I am still driving (with the Disabled driving test), but rarely more than 60 miles x 2 out and back.
In Oct 2018 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 and not much longer driving …. such shocking information to hear, without any warning.
I was dumbfounded!
It seems that specialists tend to offer ‘worst-case scenarios’ to patients, many of whom believe them 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 research (with concepts like ‘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 socially engaged 80 year-old. 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 follow-up MRIs have shown no gross changes. However beware: an MRI only shows an instant in time, and that does not always sync with what’s really going on!
The specialist research team at University College London (UCL) has questioned whether this is truly PSP, and my GP had expected quicker degeneration, but ….. “You never quite know what to expect with PSP”.
‘MANAGEMENT’
- For 3yrs I have had regular Cranial Osteopathy and/or Cranio-Sacral treatments, with Homeopathy and Acupuncture …. despite some disruption from Covid regs.
- Plus regular weekly exercise regimes such as Yoga and Pilates …. and some swimming.
- Distant healing. i.e. White Eagle Lodge, and Deer Tribe Medicine Society.
- I am being checked every 8-12 weeks by a kinesiologist for diet and necessary supplementation.
This whole regime has certainly helped me with balance, coordination and spatial awareness, compared with Nov 2018 – but I get very drained from only 4-5 hours sleep a night quite often – probably a PSP effect.
Recent incidents also highlight my vulnerabilities including deteriorating handwriting; my legs just giving up in minutes when swimming; variable slurring of speech; some lapses on computer; and reduced ability to coordinate directions, hold information, 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.
Degeneration?
Since diagnosis in 2018 I have travelled internationally for family and events … but less so more recently due to Covid, and by my own decreased desire to travel aged 80.
Looking back three years my degeneration seems quite slow, and to my joy there are also ‘green shoots’ now and again, like improved handwriting … Why? … maybe the Lions Mane effect, or …??
Caveat: “What has helped me may not benefit others.” So I asked my osteopath if other similar treatment is likely to help Parkinsons, Alzheimers, PSP, CBD, etc …. His reply was ‘Definitely YES!’
Further Comments Anticipate change: My recent vision test showed “Very good eye health but a major change in your double vision” ….. > £250 for new lenses, with a warning: “Prescription perfect for now, but may be out of date in 6 months!”
- Little is known about PSP, which seems caused by increased brain plaque from ‘tau’ protein.
- University College London (UCL) is studying PSP volunteers, to analyse developments. As a volunteer I have been assessed in Nov 2020 and 2021: recent findings have not yet been released.
- I believe that my PSP probably originated in 1964 (age 22), with a near-death accident (coma, damaged pituitary and double vision). My symptoms currently strongly resemble those in 1964 and 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 may have a head-start. However I chose Cranial Osteopathy for myself, 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. So choose your own ….. probably for me the cranial work has been the most effective.
- 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 …..for me 1.5 litres Malvern spring water per 24hrs (more in summer).
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).
Do investigate alternatives. Specific mushrooms/fungi for example help repair brain tissue, and
After some research I now include Lion’s Mane and Amanita Muscaria in daily supplements!
- 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.
Email: helpline@pspassociation.org.ukPhone: 0300 011 0122.
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 would take me 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 brains, and that repairing damage is both possible and 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 …. ‘Please Stay Positive’, so think and act healthy. Encourage real friends, avoid others.
- 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).
- Prioritise your life goals. Exercise and eat well. Get help, including therapies and visualisation.
- Contact the PSP Association. Check out all options that may improve your condition.
- 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 each suggestion above has 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.
PSP Clinic
End stages of PSP
Living with PSP 
Seeking some Advice on PSP
