Distress and agitation

[redkilt]

My brother was diagnosed July 2018 with PSP - probable onset around 2014, definite signs 2016. He is now in residential care but has never come to terms with diagnosis : knows but is very very restless, hates the loss of independence, rails against whatever takes his attention at a given moment and no apparent insight. Does anyone have an idea of what might calm his nervous system which is on red alert most of the time ? Could CBD help I wonder ? I have been reading these posts for some months now and find them incredibly supportive . . .

[Hidden]

I have read about people having positive results with CBD oil. An anti anxiety drug may work just as well. Talk to his GP. You may have to explain the disease to the doctor.

I did read that ranting was a symptom of a neurological disease. Larry did a lot of ranting in the early stages of the disease. It passed. Think it took too much energy to do eventually.

[easterncedar]

There are many anti-anxiety and anti-depressant drugs available. Not to say CBD won't help, but the effect of any treatment is hard to predict, and your brother's doctor should be consulted. There's no need I can see not to try to improve your brother's emotional state. Nothing to lose.

[SewBears]

Do you know your brothers pain level? My husband’s mood improved, not from antidepressants, but from managing his pain. Antidepressants didn’t help him but they did make him delusional. Everyone reacts differently to meds and it’s all about trial and error. I hope that his doctor can figure it out.

[Cuttercat]

Like Jeff said I think it’s part of the progression. Perhaps music might help. Gregorian chants helped us. Worth a try.

Also sleep deprivation is large with PSP. Trazadone was a godsend

Let us know. We are here for you.

Cuttercat

[AnneandChris]

Chris was on Clonazepam which helped his sleeping tremendously, 10 hours easily. We had Classic fm on during the day and I feel that this helped generating a calm atmosphere. He had a couple of episodes where he was very agitated bit we managed to get him into bed and he then relaxed.

It's so difficult to predict how this cruel condition is going to affect our loved ones. Thinking of you

Anne

[Y2U4]

My husband was diagnosed July 2018 also. Symptoms started 2013. He is in a residential care home. He takes CBD oil to help with anxiety and to help him sleep. It works great. I prefer CBD and not have him take other meds with who knows what chemicals are in them. He is on hospice and his doctor ordered the CBD oil for him. We are in California. Hope this helps.

[LuisRodicioRodicio]

Hi redkilt!

I'm sorry PSP has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

Agree with SewBears, this disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

These are our experiences with PSP-RS.

*Symptom control: Most people only take medication for symptom control.

•Control of palliative medication against depression, as well insomnia and anxiety. In our case right now (after 7,5 years from the first symptom of PSP): 1 Sertraline-50 at breakfast (depression) and 1 Lorazepam-1mg one hour before dinner (insomnia and anxiety) (**). Of course all these drugs were prescribed by a physician. After around 5 years with this medication no appreciable side effects on our case.

(**) I have read that to improve the patient's sleep are using "Melatonin" successfully. Ask physician.

Pills can be taken in a spoon of applesauce or similar...this helps it slide down. Also a good pill crusher helps.

A light dinner helps to control insomnia. Also a moderate walk (with aids) or wheelchair before dinner helps to generate a natural fatigue that helps fall asleep.

Some include a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.

In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day.If you are interested see:

healthunlocked.com/psp/post...

Hug and luck.

Luis

[racinlady]

We used CBD oil for my husband. It seemed to help with anxiety. It also improved his appetite. We used a ratio of 20:1 CBD:THC. It's a little trial and error, but so are any of the meds because they affect everyone differently. We are also in California. I think it's worth a try. Start with a very small dose and increase it slowly until you see how he tolerates it.

Pat

[daddyt]

I'm treated with two different antidepressants - Nortriptyline and Effexor as a booster. Both help with depression, moodiness and anxiety, covered under most insurers. I believe CBD oil is an out of pocket expense - good for pain. I haven't read or heard much about its efficacy with "moods."

Tim

[Ettavb]

I haven’t read all the prior responses so I apologize if someone else has shared something similar. My mom has CBD and also has never accepted her condition or any standard medical interventions really. She is a pistol to deal with and because of her agitation directed at anyone who tries to help, we’ve tried to calm things down too (she refused all pill based anti-anxiety meds because Dr’s are evil and big pharma is the devil - and by God they won’t get her! (I think you get the idea as to her state.))

When I first suggested CBD through Palliative care they would only write her a script for Marinol (big pharma version of THC). Ironically mom accepted this pill because she believed it was “all natural”. (It isn’t, but again she’s not always rational IMHO.). She ended up with a rash that sent her to the hospital at about the same time she started taking Marinol - so it was discontinued, even though it was later ruled out as the culprit. (It remains on her allergy list because I’ve never fought to have it removed.). The few times I saw her “on it” she seemed dull and a bit out of it. She said she didn’t notice much difference.

About six months later, unbeknownst to me, she asked my brother to help find a cure (because I ‘wasn’t working on that’, according to her). He called me (He has been largely absent in the years of dealing with this, but did start visiting her 2x a week when I told him she was in end stages - which I greatly appreciate at this point), and wanted to know about stem cell therapy, or CBD oil. He wanted to know if there would be a drug interaction because he had been giving her a CBD oil pill during her visits. (Good question, even if out of logical sequence!) She did say it helped her sleep better at night. That didn’t continue though because it was expensive for my brother and beyond his budget.

Until CBD, THC are more mainstream, I think it will be hard to find much other than anecdotal stories than ours. As far as safety, and drug interactions, and efficacy — just not enough research at this time on it IMHO.

Also, we’ve tried Melatonin for sleep issues with no real detectable or consistent results.

[eaglet]

Cbd oil helps me with restless legs as well as anxiety