Sorry to be on a dark pathway. But lately I've come to realise what I have got.
I was diagnosed with CBD by my neurologist nearly a year ago.
Lately I seem to be in a lot of pain. But then I think am I? I see and hear things that I know aren't there.
Is it just the way that this horrible condition happens. I really feel I am in decline. Aside from the usual meds I also take madopar. My neurologist has increased my dosage. I take 2 three times a day.
Just wondering if anyone is in a similar position.
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I am so sorry you are feeling like this, it is awful at any time but it must be so much harder in the current situation.Have you seen any benefits of Madopar? As I am sure you aware Parkinson's drugs rarely work for CBD/PSP and if they do the benefit normally decreases over time. Has your mood got worst since taking the Madopar - one of the side effects can be a worsening of mood.
I think you should talk to your GP about the pain, I am just thinking out of the box here, but are there pain management clinics running virtually you could join, have you tried a tens machine, meditation, a heated over blanket. My brother suffered from chronic pain & found wrapping himself in a heated over blanket soothed it somewhat. My Mum who had PSP found a lavender scented wheat pillow for her neck helped.
With regards your mood again, talk to your GP & ask them to do an assessment for depression. There are a series of questions they ask you, which could be done over the phone, to assess your mood. Mum had this done & was prescribed a low dose anti depressive, it made a big difference to how she was & though I wouldn't say she was jumping for joy, she was more able to deal with how PSP was affecting her.
Are you able to get out at all? Even if it's just opening a door or window & breathing fresh air for 5 minutes & observing nature, it can help lift your mood. Having a bird feeder can offer hours of entertainment & help distract you for a little while.
Please keep posting & let us know how you get on.
A big virtual hug (which is all any of us can get these days) is coming your way. xxx
I'm sorry too to hear how you're feeling and quite understandable, you're dealing with so much. I would echo what AJK has said especially about speaking to your GP.
Can you close your eyes and get lost in an audio book or some music (Beethoven's 5th or Vaughan-Williams The Lark Ascending transport me mentally elsewhere but music is, of course, so personal, GnR or Dolly Parton may also do the trick)? Like watching birds, it can distract you for a while and help even your mood a little.
I am very sorry that you are feeling this way. I also have been diagnosed with cbd and my symptoms are classic. One of the first medications my neurologist put me on was an anti-depressant, I take a low dose of sertraline (Zoloft) which seems to really help. It takes a few weeks to take effect but it helps me. I don’t know if you have to wean yourself off the Madopar first because there is something about the interaction between the 2 drugs. Levadopa (I am in the USA) never worked for me, either. But please don’t stop taking the madopar suddenly. I also take Clonazepam and Baclofen to help with the stiffness and spasms. Plus Botox shots in my right arm and hand to reduce the tightness. I also use a variety of different heating pads to help with the stiffness and pain.
So that is the practical side. I don’t know what your personal circumstances are but do you have loved ones around you? Are you able to get outdoors at all? Are there any personal interests that you can still pursue?
Other people have made great suggestions about putting some pleasure back into life, please let everyone know how you are doing.
My Mum was on a madopar last year for her PSP last year - you do need to wean off it slowly, in reverse as to how you get up to full dose. We were well aware it helps in less than 10% of patients so went with the expectation it wouldn't make a difference but hope that it might. It didn't but there was nothing to lose and something to gain.
Sorry that your not doing so well it’s all overwhelming at first I was diagnosed with Parkinson’s plus just over 2 years ago I remember the day well 31st of November 2018 my partner I drove home in silence I am 65 and once I got over the shock I through myself into exercising and haven’t looked back.My g p put me onto venlafaxine 75 g magic pill for depression if you have a good doctor it would be worth talking through your mental and physical concerns my dr sent me to a physiotherapist to help with balance and pain in my hip you are untitled to 6 free session a year the session where invaluable to me she got me onto u tube for exercises aiming at Parkinson’s it’s called P D Worriers it’s fabulous I don’t know how active you are or what you are capable of but I believe it’s possible to retrain the brain I couldn’t swing my left arm and move to right side of my body know can I started out on madapar 125g doses 3 times a day it helped my tremors but after awhile my body started to reject it causing my body to start thrashing my shoulder around and the hallucinations and night mares where so disturbing I would wake up screaming and I would be hitting my partner poor bugger my neurologist changed my medication to 62.5 g of madapar 3 times a day and baclofen 10g b 2 times a day the baclofren is the tremors as on a lower dose of madapar I still had bad tremors in my left leg the dose seems to work for me the nightmares and hallucinations are rare I also find going to exercise classes is a relief valve as well you can talk about it as much or as little as you like or it’s a great socially it good for the mind I am restricted to driving on freeways and hight speeds I can drive in my local area which is great all my shopping and exercise classes are within a 5 kl radius this is where I take advantage of being in the car alone as I do vocal exercises and face exercises as my lip is starting to be affected a little some droling at night in sleep and my lip is a little weaker put it hasn’t worried me get I am sorry if this is all over the place just trying to put it out there l believe exercises and going out socially is the answer I walk swim do aqua aerobics konga dance class and I am now going to go to try out tai chi it’s a release valve for me I am lucky I have a supportive partner and family and my daughter is great my parents are elderly so they have no idea of my condition I have managed to hide it pretty well it would destroy them plus my dad would drive me nuts he would be ringing all the time sorry if it seems I am rambling.I hope this has has been helpful in someway chi up keep fighting life is still good 🙂take care of you let me know how you are going 👌much love and big air hugs your way ❤️
Hiya AJK! I was diagnosed with PSP two years ago, and I was so p'd off be the neurologist's negative language that I made a resolution to not give in to it, and to try some complementary alternatives. That's what i did, and in 2 years there has been very little deterioration. Most important things were cranial osteopathy and similar which helped my spatial awareness (ie. driving) - then a targeted exercises especially Pilates (for Balance & core strength) - and Then specific diet (Mediterreanean, with supplements). It's all really helped. Reckon mine started with a v serious head injury + coma. The docs don't agree with me but have no ideas themselves! I've made an 'Update' here attached below, hopefully, and is you can get something fro it please make the most go it urself, and pass it on. Am also very happy to correspond by email, so happy to become a pen friend of yourself you like.Lots of other suggestions on this site...... best wishes and a very big warm hug! xxxTIMBOWxxx
There is a lot of stuff here ........... so just pick out whatever is useful to you.
Tim Willcocks, Flat 3 St Andrews House, 38 Graham Road,
IMPROVING PSP SYMPTOMS – an Update 10 January 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), 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 24 months I have had regular Cranial Osteopathy and Cranio-Sacral treatments, Homeopathy and Acupuncture. Sadly the hands-on work is currently stop-start, in line with Covid regulations.
- 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 am exhausted from only 4-5 hours sleep nightly, and there are times when life seems to closing in around me. Fears are magnified at night, and by day I feel more upbeat.
Some dietary advice (specific to me, but likely to be valid for Parkinsons, Alzheimers, and 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’)
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!
The experts say you can manage the symptoms, but not alter the condition …. however the recent buzz concerns brain plasticity, and that indicates anything may be possible!
Degeneration?
Last year 2019-20, I drove to the south west of Ireland and back, flew to Dublin to meet friends, and spent December on a family visit to Vancouver. Autumn 2020 was West Wales by car.
Just recently I have been noticeably more wobbly and less focussed, but looking back two years I reckon that so far I have improved overall.
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’ delayed the start of this, and my first session as a ‘remote’ (Zoom) volunteer was put back to November 2020.
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 had an MRI scan with the NHS within a few weeks, but to get a consultation and diagnosis can 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, including an on-line international forum. Email: helpline@pspassociation.org.ukPhone: 0300 011 0122.
Healthunlocked.com is another social networking service for health, and a very useful forum.
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 three times 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: ‘You are the Placebo’ by Dr Joe Dispenza, 2014 & ‘The Angel and the Assassin’, by Donna J.Nakazawa, 2020.
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 (to keep the brain active).
Sing as much and as often as you can (good for throat muscles, which PSP may affect).
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 is 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.
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