Q10 1200mg for PSP?

[DaniSS]

Hi everybody. It is my first time posting on this group. My mother in law was diagnosed PSP 1 year ago and she is not responsive to Levodopa med. Dr. says only option is management. I read about Q10 1200 mg recommended for PSP as adjunct treatment. Does anyone have experience with Q10? Her doctor said she has no experience with Q10.

[Kasenda]

Hello Dani, I tend to agree with your Dr. With PSP it’s more symptoms management, unless there are other health complications. My husband tried medication for 3 months but it made him sleepy most of the time and did nothing for his movement and balance. Our neurologist did not recommend anything else. Hope this helps.

[DaniSS in reply to Kasenda]

Kasenda, thanks for your repply. It is hard to imagine so little can be done in terms of traditional treatments. Warms wishes.

Daniela

[timbowPSP]

Hi Dani, Sorry you have met up with this unwelcome visitor PSP .... Please Stay Positive! I am 80, was diagnosed 3.5 yrs ago, and was really shocked at the diagnosis. As a therapist myself I put in a whole raft of options which I decided on myself, as nothing was offered by the medics, and I do NOT want chemical drugs. (BTW Levodopa is for Parkinsons not for PSP). I have remained on Supplements, Diet, Targeted exercises, and Therapy treatments since then. I am degenerating very slowly, much slower than they expected, and living (with partner) a fairly normal life still - which is great! From my experiences I have put together 3 pages of my own suggestions (appropriate to the UK in parts - but really for anyone). So I'll splatter it all over this page, and hope that you and others will get some benefit from it.

BTW where are you in the US? ...... my kids are in BC, just over the border!

Best wishes, keep smiling, and scroll down! TimbowPSP

Tim Willcocks, Flat 3 St Andrews House, 38 Graham Road, Malvern WR14 2HL

T: 01684-567721 M: 07736-736068 e: [e-mail]

IMPROVING PSP SYMPTOMS – MY PERSONAL JOURNEY Update 15 Nov 2021

NB.

This is going out of date (6.3.22), so to be revised as soon as I have time!

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 yet, 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 research, 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 80 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 instant in time, and that does not always sync with what’s really going on!

‘MANAGEMENT’

- For nearly 3yrs I have had regular Cranial Osteopathy and/or Cranio-Sacral treatments, with Homeopathy and Acupuncture. Hands-on treatment has been stop-start in line with Covid regs.

- 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 8-12 weeks by a kinesiologist for diet and necessary supplementation.

This whole regime has helped me encouragingly with balance, coordination and spatial awareness, compared with Nov 2018 – but I get very drained from only 4-6 hours sleep nightl – a PSP effect. Recent incidents also highlight my vulnerabilities, such as deteriorating handwriting; walking and gait getting more wobbly and drunk-looking - so always a stick in hand now for stability, swimming now pathetic as my legs just give up in minutes; variable slurring of speech; glugging water slower; 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

.

COST Such ‘management’ costs a packet, but I have spent whatever is needed - 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 travelled to S.W. Ireland and to West Wales, flown to Dublin for a reunion, and visited family in Vancouver … limited more recently by Covid, and 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 I am aware that that PSP events may suddenly start to ‘cascade’.

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, but research is coming along for this Cinderella of diseases. It seems to be caused by a build-up of plaque in the brain from ‘tau’ protein.

- University College London (UCL) is studying PSP volunteers, to analyse developments.

As a (Zoom) volunteer I have been assessed in Nov 2020 and 2021: the UCL MRI Unit now awaits me.

- I believe that my PSP probably originated in 1964 (age 22), with a near-death accident (coma, damaged pituitary and double vision). The symptoms back then bear strong resemblance to more recent ones, yet the specialists cannot agree about this 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 ….. and 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, and After a little research I have included Lion’s Mane in my 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: [e-mail] Phone: [phone].

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 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 …. ‘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.

- 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.

- If you develop speech difficulties - a PSP effect - get referred ASAP to an NHS speech therapist.

- 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.

[DaniSS in reply to timbowPSP]

Timbow, thank you for your thoughtful reply to my message. I am a psychologist in the States and strongly believe in both functional medicine and the neuroplasticity of the brain, so I am always looking for alternatives or adjuncts to traditional medication. PSP seems like the perfect candidate, as traditional medicine fails to change its course. I read that high doses of Q10 have been found to be beneficial with PSP, so that prompted my questions, as 1200 of Q10 seems like a pretty high dose. I will definitely pass along your valuable knowledge to my in-laws. I am sure they can make good use of both your knowledge and your amazing spirit.

Warm wishes.

Daniela

[timbowPSP in reply to DaniSS]

Thanks for that CoQ10 info Dani. I better try it!My latest trials are on Lions Mane, and also just starting Amanita Muscaria made by herbalist friend! (which got the Vikings raving!)

And Homeopathic stuff as prescribed by v. experienced Melvin, which includes Homeop Opium.

Maybe too much choice know whats working ..... but if it works that's great, and so far no noticed disbenefits.

How good to be talking neuroplasticity with someone who understands it.

Cheers, for now TIM

[Kasenda in reply to timbowPSP]

Thank you Tim, yes we can stay positive. I think that’s what keeping us going. It’s been 10 years since the onset of PSP for my husband. I will share your summary with my support group. Thanks again and I wish you all the best.

[timbowPSP in reply to Kasenda]

Thanks Kas, interesting ...... so how's he doing now? 'They' say an average of 7-8 years from diag to death, so he's doing well? I'm planning to rewrite those stats, and so far still good after 3.5 years! Best wishes to you both. TIM

[Kasenda in reply to timbowPSP]

Thanks Tim, he is sleeping a lot now but he is peaceful. He has got a PEG tube and maybe that’s life prolonging. But it was his choice to have it 3 years ago when the swallowing got worse. It made life less stressful then for us both. He can’t eat anything by mouth now. But he is still aware of his surroundings. Take care.

[DaniSS]

Take a look at Dr. Merzenich Website to promote neuroplasticity. I found it in his book Soft Wired. Will send you more details on Q10. Please let me know how it goes with Amarita Muscaria. Is there any specific info on it? That might be a stretch too far for my mother in law but i personally would love to know about it.Best

Daniela

Soft Wired