PSP best advice = Please Stay Positive - PSP Association

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PSP best advice = Please Stay Positive

timbowPSP profile image
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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.

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23 Replies
Kasenda profile image
Kasenda

Thanks Tim for the good advice. Will read out your summary in my local support group and will try to follow it in our own PSP journey. All the best.

racewalk profile image
racewalk

Nice synthesis of the problem. Keep hi!

Very interesting to read and inspirational too. Will read this to my PSP husband who is in bed 95% of the time......maybe we could work on the nutrition to begin with x

timbowPSP profile image
timbowPSP in reply to

Hiya LoveWinter, so sorry to hear about his situation and yours. Are you in UK, or ,,,,,?I am no health guru, and am just trying to hold this PSP in check. I do need to get out and walk lots of times, but its getting harder ...... and I dread being in bed 95%!

Good diet, plenty of drinking (water), and brain activities are vital plus supplements, which vary for everyone. Vits C, D, K seem good, so do plenty of research: on-line and via Health Unlocked.

Do you have carers in or are you solo? You will need help, so get hooked into the local network sooner than later. For handrails its, you need the local Occup Th'pist - free up £1,000.

Best wishes to you both. What else can I offer? Timbow PSP xx

We live in London UK. We are pretty well organised but I am starting to think about a specialist nursing home as I'm certainly getting burnt out....

Jeeoh profile image
Jeeoh

Hi Tim - really appreciate your post, especially being new to this with my Mom (diagnosed just last month and appears to well into the mid stages with poor mobility). Regarding the Lion's Mane supplement - can you please describe the benefits after starting consuming them regularly?

timbowPSP profile image
timbowPSP in reply to Jeeoh

HI Jeeoh, You are the right person to read my post! Able to take an informed interest in symptoms and options ... no cabbage state mentality! By the way, a neurologist 58 yrs ago after my head injury told my mum that "He should be good as a cabbage within 6 months" I've done better than that cabbage, so there's hope for all of us?Lion's Mane. I cannot claim any specific benefits, since I am taking such a range of supplements .... which overall are keeping me stable. It can help with brain repair, says the reseArch. Suggested to me by a healer in Vancouver who is also an ex-biochemist. The kinesiologist who now checks my supplements every 6 weeks has me on 2-3 capsules Lions Mane weekly. I trust her intuition, so am not going to argue!

I prefer email for this, so will be a happy if you send your address to twillcocks2@gmail.com. Or carry on with this.

Best wishes Tim W.

LostinHeadSpace profile image
LostinHeadSpace

Thanks for the positivity! It's interesting that you had a severe head injury--my husband was also knocked out cold for a whole day in a fall from a tree when he was a teenager. I've wondered if that's what caused his possible CBD.

honjen43 profile image
honjen43 in reply to LostinHeadSpace

Interesting, LostinHeadSpace ! My hubby played rugby in his school days; and I also remember him saying that his step grandmother used to box him round the ears when he was left with her - which was frequently while his stepmother worked! He also had a meningioma on the brain although it was not considered to be part of the reason for his CBD diagnosis.Hugs

Jen xxx

LostinHeadSpace profile image
LostinHeadSpace in reply to honjen43

That's really interesting. A person kind of wants to know what the cause is, even when it's not definitive, and doesn't affect treatment!

honjen43 profile image
honjen43 in reply to LostinHeadSpace

No real reason to suspect it could be linked - but it is noted here!I made a couple of comments while hubby was sick, regarding skin flaking and an irregular temp. Since then others have also commented on both topics as affecting other patients here.

That, I think, can be useful!

Stay safe and well.

Hugs

Jen xxx

timbowPSP profile image
timbowPSP in reply to honjen43

Same with me ...... major caving accident 58 years ago, aged 22. 3-4 days coma, 4 weeks unconscious, severe bruising, double vision ...... all that. PSP diagnosis 4 yrs ago, now I am 80! "Oh no no ... no evidence to link the two! But I'm damn sure they are well linked. Timbow (PSP= Please Stay Positive!)

Lara_2004 profile image
Lara_2004 in reply to honjen43

HHi honjen43

I also have a meningioma. in the front temporal lobe. I haven't been able to participate in PSP trials because of this. I haven't been told if this contributes to the PSP. However, would be very interested if any others out there also have a meningioma

Richard33 profile image
Richard33

Tim, Really good advice for anyone embarking on this journey. And great positivity. For Ruth, who was diagnosed in 2016, I think it was exercise that has been the most important - as you rightly emphasise.

Keep pushing back against the disease - it has met its match in you!

Richard

timbowPSP profile image
timbowPSP in reply to Richard33

Good to hear about Ruth - and from you! I do a weekly Pilates class, for suppleness, strength, etc, also 5-10 mins daily. My knees are arthritic so exercise getting harder. What's Ruth's situation? Best wishes and love to you both! TIM

Richard33 profile image
Richard33 in reply to timbowPSP

She is slowing down now and in a wheelchair the whole time. We still see a physio each week and do exercises - bit of walking with a frame and on a static exercise bike. But she is losing her motivation and I am only have so much energy to encourage her. I think the key is that you stay motivated because we carers run out of steam! Her ability to speak is almost gone, but we kept it going longer using the LSVT vocal technique - again the more you can do yourself, the longer you can keep it at bay.

So all credit to you on all this. You sound like you are doing everything you can.

Richard

timbowPSP profile image
timbowPSP in reply to Richard33

As soon as the neuro gave me the end of life stuff I muttered 'F you, mate' and set myself the unlikely task of improving! My mind is good, the rest struggling a bit. Don't like to consider the future, xept to do what I can NOW.It must really tear you up as a carer - not just physically .... And You need support from the council, 'away days', whatever. Make the most of ur opps! etc.

LSVT vocal sounds great .... point me in the direction ...... Cheers TIM

Richard33 profile image
Richard33

Tim,You certainly have the right spirit! Keep it up.

LSVT vocal technique is something you can just do yourself daily when you think your voice is starting to struggle. The basic premise is that if you can train yourself to maintain your volume you can make yourself more understandable. Designed for Parkinsons - lsvtglobal.com/LSVTLOUD.

As you say, make the most of the present - a lesson for all!

Richard

Blueclouds07 profile image
Blueclouds07

Thank you Tim . I really hope others would benefit from our experience. It is very hard my mom has been diagnosed with PSP in 2020 and from that time she has been deteriorating so quick. Family support is very important in such cases and good understanding of the disease process. I am trying to make awareness in the community of my country Saudi Arabia, they have totally zero information.

timbowPSP profile image
timbowPSP in reply to Blueclouds07

I replied to you yesterday Blue Cloud, and I may have been very offensive to you, suggesting 'lack of empathy', etc. Apologies if so. I have worked in Dubai and Eastern Europe and found that conversation hardly ever touched on anything to do with feelings, emotions, etc. What can I say .... just my ignorance? Best wishes Timbow

timbowPSP profile image
timbowPSP

Thanks Blue Cloud! Did I send you my PSP Journey? I guess plenty $$$$ in Saudi, and no empathy. I am just learning there are 8 variants of PSP. Seems I am a slow burner quite different to ur mum/mom .... which is sad. But it's all at research stage and bit beyond me. I got a life to live, and a book to finish! And enjoying it all so far ...... and keeping busy!!Much love to you and ur mom, and my best wishes TIM xx

K7LA profile image
K7LA

You are incredible Tim! I'm not surprised that you are managing your symptoms so well with everything you are able to tackle this with. You sound so empowered and resourceful. I'm astounded. The fact that you are 80 too speaks volumes to me. It shouldn't matter. Mind truly blown here. I only wish my poor dad had a little more of what you possess to throw at this. My parents tend not to be open to any alternative treatments or anything much that feels new which is a shame but their choice and journey. It's very sad and hard to witness at times. Interesting what you wrote about the accident as a young man. My dad became severely ill in his mid 30s and symptoms were similar then he recovered. You are utterly inspiring. Love that you use distance healing, study epigenetics and all the wonderful treatments, resources and supplements that we have at our finger tips should we choose them. . Thank you for sharing Tim, I don't know how I missed this one! Big hugs!Lisa

timbowPSP profile image
timbowPSP

Shit - I was writing reply to you but it's just disappeared! ... Anyway what did you miss? Ur profile pic could be redwoods - in USA, or Pooh Bear's forest in Sussex UK ... so where are you? I may sound good, but am starting to miss things too ....... like corresponding with Blue Cloud, K27LA, Lisa, Muna ..... and now they are getting muddled! You are Lisa, K7LA, enthusiastic, supportive, loving and great at (virtual) strokes ... right? Maybe I sent you my 'PSP Journey'? I love hugs too ....... and hot water springs/thermals. You? How about a pact for meeting next lifetime in that kinda place? ........ or even sooner. So long for now xx

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