PSP starts how?: PSP starts how? - PSP Association

PSP Association

7,229 members9,817 posts

PSP starts how?

Shannon27
Shannon27

PSP starts how?

11 Replies
oldestnewest

Hi Sharon... that's a difficult question to answer. With my mom l believe it started with her balance and later eye sight. It took years and many dr visits before she was diagnosed with PSP. This is a good site to ask questions about PSP as it has touched all of our lives in one way or another. The folks here are very understanding and supportive. Sending hugs... Granni B

The day this question could be answered with definite standards is probably the day this disease has an effective cure...

Unfortunately, we don’t know, some people starts with gait issues, some progresses to unexplainable falls quite soon, and some starts with gaze problems or stiffness in their legs or neck.

After diagnosis is usually when people and caretakers start to reflect back upon their first symptoms, could go back 5 years, not unusual for us to dig out something buried deep in memory 10-20 years ago...the first signs are usually ignored because they were just too subtle and common, could be explained with many other conditions.

Hi Shannon27!

These are our experiences:

My wife was diagnosed with PSP-RS on June 2015.

From 2008 to 2016 my wife fallen different ways 11 times, some of them serious. From 2008 until the first worrying symptoms of PSP in 2012 she showed some instability and suffered two serious falls that nobody related to PSP.

It is worth highlighting a reduction in the size of her writing and worse structure of the letters as well as greater difficulty in keeping up with a walk at normal speed (3 to 4 km / h) on March 2011.

The first worrying symptoms showed up in March 2012: difficulty with speaking as if she had a stone in her mouth and a slight tremor in the ring finger.

The definitive diagnosis was done in June 2015 (after troubles in eye movements were detected, which was a specific symptom that - added to the difficulty in speech and walking instability - guided towards the PSP-RS diagnosis.

DATscan between 2012 and 2015 did NOT confirm the suspicions about PD, PSP-RS, PSP-P, PSP-CBD, etc.

Hoping to be useful.

Hug and luck.

Luis

That is a very difficult question to answer. For each of us patients our journey through this disease is unique. My own journey of unique symptoms can be traced back to several falls that began in early 2016. All of them backward and all unexplained. My progression and symptoms increased in February 2017 with dizziness that to this day cannot be controlled, noticeable cognitive impairment and decline by June, eye movement problems first noticed by opthalmologist in February 2019 and speech slurring and slowdown by mid 2019.

I noticed it first in that my hand writing had begun to get smaller and smaller

Hi Shannon. As others have commented, this is a difficult question. The reason as I understand it, is because the symptoms don't come in a specific order and also, not everyone will have all the symptoms. Some people may have falls at the start and for others like my husband, not until the mid stage.

My husband's first signs were tiredness, dizziness, then slurred speech and dragging his feet along the ground. When I mentioned the last two to GP he thought it was Parkinsons and referred him to neurologist, who suspected PSP due to slow eye movement. MRI and DAT scans followed and confirmed PSP.

Research is on going as to what causes this horrible disease, treatment and ultimately a cure. 🤞

Best wishes, Nanny857xx

Shannon ..... so sorry to hear ur news. I was diagnosed PSP 2 yrs ago, but so far very mild, and little serious effect. Just for interest I am damn sure mine started with a serious accident > coma > damaged pituitary and all trimmings in 1964! Now coming home to roost. I have taken a real interest in any changes and on diagnosis instituted a regime of therapy, exercise, diet and supplements. Will try to attach but maybe too bulky. Whatever I am doing - or not doing - seems to be effective. Will be great if you can send ur email address, so I can send more if you wish. Best wishes to you both. TimbowPSP x

Tim Willcocks, Flat 3 St Andrews House, 38 Graham Road,

Malvern WR14 2HL, England.

T: 01684-567721 M: 07736-736068 e: twillcocks2@gmail.com

IMPROVING PSP SYMPTOMS – an Update 28 October 2020

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), there is no cure for it, and it may lead to quite fast degeneration, as compared to the related Parkinson’s disease, for example.

I was advised by the diagnosing neurologist to expect degeneration, a shortened life, and not much longer driving (‘taxis work out cheaper’). He advised against a zimmer ‘as sticks are better’.

However, when I was diagnosed and given such a negative prognosis, I decided that was not my language!

(But to be safe I have now completed my Will, Power of Attorney and the ‘end-of-life’ stuff, etc).

I have taken steps to ‘manage’ the condition and one year ago (Nov 2019) had a second MRI to assess any ‘improvement’. That shows ‘No gross changes’, which seems to be confusing to the medical profession. Indeed my GP several months ago said he had expected me to have degenerated over the past year, but ….. “You never quite know what to expect with PSP”.

The future? At the present time I am still planning on living for another 12 years plus, so long as I am sound enough in mind and body. That will take me to 90+ which is far enough!

‘MANAGEMENT’

- For 22 months I have had regular Cranial Osteopathy and Cranio-Sacral treatments, Homeopathy and Acupuncture. This hands-on work has now resumed after 4 Covid-19 restricted months.

- 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 have changed my diet, and am being checked every 6-12 weeks by a kinesiologist for diet and necessary supplements.

This whole regime has improved me very encouragingly with balance, coordination, spatial aware-ness and speech, compared with Nov 2018 – but I get exhausted from only 4-6 hours sleep nightly …. however even that may now be improving, with the use of a PEMF pad!

The dietary advice (specific to me, but likely to be valid for Parkinsons, Alzheimers, and others):

GOOD Loads of organic veg. Organic cows’ milk only. Very limited sweeteners : honey, molasses, possibly maple syrup, only. (Essentially a ‘Mediterranean vegetarian diet’ – Google ‘Diet for PSP’)

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’ve been throwing whatever is needed at it ….. after all, if you haven’t got health, what have you got? …….. and for me: so far, so good!

They say you can manage the symptoms, but not alter the condition …. however, the recent buzz is about brain plasticity, and that indicates anything may be possible!

Degeneration?

Last August 2019, I drove to the south west of Ireland and back. November I flew to Dublin to meet friends, December was time for a family visit to Vancouver, and this autumn was West Wales by car. Just recently I have been noticeably more wobbly and disoriented, but looking back 18 months I reckon that so far I have improved overall. Regeneration?

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

Therapies. My chosen therapies and exercises target brain and body, including balance, flexibility, co-ordination, and core strength. Best to choose your own ….. I reckon that for me the cranial work has been the most effective of the therapies.

Diet. A good diet with minimum 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.

PSP. Little is known about it, and little research seems to have been carried out. University College London (UCL) is just commencing an in-depth study on PSP volunteers to collect and analyse past and current data. Lockdown has delayed the start of this and my first session as a volunteer is scheduled for 2nd Nov this year.

I believe that my PSP probably originated in 1964, with a near-death accident in Ireland that scrambled my brain and almost put my pituitary gland out of action forever. The symptoms back then bear strong resemblance to more recent ones, yet the specialists cannot agree with my suggestion without definite evidence.

However it is recognised that head trauma can result in later degeneration, such as PSP for me (?).

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?

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!

NHS or Private?

PSP is a rare condition, and often misdiagnosed as Parkinson’s, especially in the early stages.

I have had MRI scans on the NHS within a few weeks, but to get a consultation and diagnosis may take 3-4 months. Ridiculous!

So I handed over £180 to get a private appointment: money well spent. Once I had the diagnosis I put a recovery plan into action immediately, since the medics could offer no positive suggestions.

(If you have any speech difficulties - a PSP effect - get referred ASAP to an NHS speech therapist.)

Contacts.

*There is a PSP Association based in Milton Keynes, with excellent help and advice.

Email: helpline@pspassociation.org.ukPhone: 0300 011 0122

A support group in Stourbridge semi-local to me has been formed, and they aim to meet regularly. There are others, so I suggest you contact the PSP Assoc’n above for the best information.

DVLA and Driving

If you are a driver you must legally report your PSP diagnosis to DVLA. I was warned by a friend that if you do 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 now passed me thrice and communicated the result to the DVLA. So I am still driving legally!

Research, Brain Plasticity and Epigenetics

We are all born with our own sets of genes, passed on by our ancestors, and these give us a ‘framework’ for our lives. But recent findings show that these genes do not completely predetermine us, since the genes themselves are able to change, depending on:

External factors, such as temperature, and also internal factors such as personal feelings, sensation, and mood, etc. ‘Brain plasticity’ is becoming better recognised.

Specific mushrooms/fungi may hold a piece of this jig-saw, and research looks promising.

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: ‘The Angel and the Assassin’, by Donna J.Nakazawa, 2020, & ‘You are the Placebo’ by Dr Joe Dispenza, 2014.

Support and Self-awareness.

I encourage you to:

Keep positive. Think and act as healthy as you can, and talk to people.

Keep involved in life and your family. Hug and allow yourself to be hugged – if you dare! Dance.

Try out new things like learning a language, or playing chess (keeps the brain active).

Sing as much and as often as you can (good for throat muscles).

Get help, including therapies. Exercise regularly and eat well.

Use stress management, visualisation and meditation techniques.

All these ‘good for you’ suggestions are not just dreams ….. they have a scientific basis!

You might like to ask your doctor about Epigenetics and about Brain Plasticity, and how they may affect the development of PSP/CBD, and other conditions such as strokes and cognitive decline?

In Summary

- Face your PSP diagnosis. Remember you can affect its progress.

- Get your Will, Power of Attorney, and ‘Living Will’ sorted. Be pro-active.

- Contact the PSP Association. Check out all options that may improve your condition.

- Decide on the best-for-you: Therapy, Exercise, Diet, Supplements. Put a regime into practice.

- Keep a record of any changes in your health, emotions and wellbeing.

- For driving it’s best to talk with RDAC (via your doctor?), not the DVLA.

- Take charge of your life …. don’t leave it all to the doctors and limited ‘professionals’.

Thinking about the future scary, so don’t do it too much! Just get on with life. Take it day by day. 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! Tim W.

My late husbands first sympton was almost 20 years before his death when he started to complain about his left leg sometimes not doing what he told it to do. Balance issues followed and as years when on vision and speech were effected. Later stages were definately mobility and swallowing problems. He also suffered severe bowel movement problems as well. Truley a nasty progressive disease!

Hi Shannon: A diagnosis of PSP is devastating and my heart goes out to you and your family.I can only relate to you based on hindsight, how my wife (at age 62) began to show early signs of PSP. We first noticed she was anxious and unhappy and was later diagnosed with depression and anxiety disorder. Then she had an inexplicable car accident, soon followed by spilling cups of coffee while ascending or descending stairs. As the backward falls began to increase in frequency, I requested a consultation with a neurologist and was given the diagnosis of PSP immediately. That was 2018, and the progression has meant my wife's mobility, peripheral vision, apraxia, speech, etc. is much reduced, and is now confined to a wheelchair. Safety equipment has been installed and more adjustments will be required as the disease progresses inexorably.

Exercise and intellectual and social stimulation can help slow down the progress. Looking back, I think my wife began to show signs as far back as 2014. I hope this description is of some help.

I believe my husband's first symptom was the loss of his sense of smell about 2-3 yrs before his first falls and changes in gait, etc..

Shannon, as so many here have noted, this is a difficult question to answer and the disease progresses differently in everyone who has it. But there are also some generalities that hold up, and most everyone eventually gets all or most of the symptoms. They just tend to occur at different times and in different order for all of us.

This link can give you a description of how the disease generally progresses:

brainsupportnetwork.org/fou...

Stay with us. It helps to have a sounding board and people who really care, who are ahead of you in the time line. There is a lot of valuable experience and shared wisdom on this web site that you really cannot find anywhere else.

Warm Regards,

Dick

You may also like...