My wife (PSP) (residing in Scotland UK) has been taking Cannabidiol (CBD) - ingredients hemp seed oil, hemp paste (leaf & flower) - a food suppliment I get from a health food shop for just over 2 months now. She started on drops earlier in the year but due to the taste she gave it up.
Just over 2montbs ago we started on CBD capsules building to two a day (£34 for 60 - 2 per day) but changed to drops (5% CBD) this week, £24 for 10ml or 240 drops, as told they were stronger. (I am sure if I searched the net I could find a cheaper source but just do not have the time. The 5% taste more like olive oil, a drop at a time. I know you can get flavoured ones but source not known to me at present.
The results are very pleasing - speech, swallowing, coordination, standing and awareness are much improved over where she would have been. Due to my increased confidence she no longer wears day or night pads. Short term memory has not improved.
Visitors have all remarked on how much better she is. The downside is, with improved awareness she wakes me at least twice every night for the toilet. This takes on average half an hour by which time I am fully awake and don't get back to sleep quickly, resulting in continual tiredness. She gets back to sleep very quickly!!
The professionals say there is no evidence of effectiveness as no research done, but worth trying though not guaranteed to give improvements in every case.
Additionally she has been taking Turmeric for nearly two years to aid cognition.
I feel sure the "graph line of decline" is shallower than what might have been. Whether this will continue is anyone's guess, but for the present we are making the most of what we have.
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David750
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Further to my post. As a result of changing CBD from capsules (1 twice a day with meals) to drops (2 twice a day) my wife seemed to get worse. I checked with supplier and found I should have been giving at least 6 drops a day to equal the capsules; I increased the rate to 8 - 3, 3 & 2 - we seem to be back on track, talking better and much less coughing. Drops under the tongue, I am told, is a more efficient way to get drugs into the blood stream. Through the digestive system with capsules it is less efficient - some lost. From all this I thought 4 drops would be sufficient, but seemingly not. After a week of improvement I reduced to 6, - 2, 2 & 2, early days but all seems OK.
Thank you for the info, David. My husband’s ( diagnosed with PD since 2011 and with PSP since 2014 ) swallowing ability has been slowly deteriorating. He is not verbal. Lately I found that instead of swallowing he is spitting and vice versa. No memory problem. Did your spouse exhibit any such symptoms?
Also did you stop all other Dr. prescribed meds and other supplements when you started on CBD drops? Currently I have been using atropine drops for saliva reductions. Helps a bit, nothing major.
Thanks again David. Hope your wife continue to feel better. All the best.
Hi Vswamy, since taking CBD swallowing has been easier. We have not altered prescribed meds - Apixaban, Doxasosine and recently Atrophine which is controlling saliva, so no spitting. 2 drops first thing followed by one drop midday and one in evening. A side effect is confusion so will not increase unless saliva be ones more of a problem.
Hi Teddies, CBD still having a beneficial effect in my view. PSP sadly still progresses. Speech now is difficult by night time and will probably not be possible on the not too distant future. She is coughing more but swallowing is OK as fed in light of the fact she tires as the day progresses. She still manages finger toast, butter & marmarmlade with Nutilis thickened coffee through a bendy straw for breakfast, a slow cooked stew for lunch which I feed her (care taken to ensure she does not try to talk during and she does not get out of breath) accompanied with a little wine, unthickened through a bendy straw. Evening meal is soup (liquidised) , which she drinks herself from a nosey cup in two handled holder & icecream/bought individual trifle, I feed her.
Awareness which CBD improved so much in the beginning enabling us to dispense with day and night pads in favour of normal underwear, appears to be lessening. Due to accidents we are now back to using Plus pads at night with pant liners during the day.
I think the response to CBD will be subject to the stage the patient has reached in the progression of the condition. A measurable response is not always possible. There will come a time when I will stop administering it. So long as, I can keep her swallowing through managing the consistency of her food I will keep asperations at bay. She has opted for no medical interventions if she gets pneumonia. (so the pressures are on me to an extent.) "For what" she said "life will not be worth living when swallowing is that difficult along with all my other faculty failings". She read "You, Me and PSP" from cover to cover when first diagnosed and all the PSP Association literature so is fully aware of the future for her. PSP is very cruel.
Hi David, thanks a bunch for the clarifications. I will check around here, we live in the US. Your description of CBD drops would help a lot to get drops here with similar composition. Wish me luck. Again thanks a lot for sharing your experience with us. Have a nice day.
Hello David, after I got the dosage info from you I got the CBD oil, though it was hard to know the exact dosage as the health store folks speak a different dosage format. based on the recommendation from a friend started my husband on CBD oil ( from a reliable manufacturer) 3 to 4 weeks ago. It said 10mg per serving and less than 0.1% THC. The dosage seemed a lot, 20 drops versus 2 drops. Maybe too mild. Did not see much improvement in his condition, instead, swallowing was getting worse and hubby thought that the oil is the problem. We have started him on puréed diet a week ago, and stopped the CBD oil for the time being, until I totally understand the terminology of THC, % of CBD oil and get the right dosage, drops etc.
5% Cannabidiol (CBD), maximum 10 drops/day, I am now at 9. Response seems to be determined by stage of the patient's progression as we are getting less than we were, but believe we have been better than we would have been without it.
Thanks David. I have heard from my friends similar experiences with dosages, I need to get the right CBD oil and go from there. I will check around our city’s health food stores one more time to get educated on different CBD brands and dosages. Very pricey indeed! Especially when I went for palatable mix!
Sadly very expensive, perhaps why there is foot dragging against putting it on prescription, plus no trial info to justify so we are left on our own at the sharp end.
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