Sedation in PSP

[Birdman34265]

Hi ,my Kathy is in hospital level care in a rest home ,todays visit was distressing for me as she held me close as much possible with limited arm movement and made sounds which sound distressing to me,I left in tears as it would be hell to be trapped in a non working body.one day I pushed her through a doorway and she stuck her leg out to open the door further,which shows me her brain is still active.shes on morphine for pain in muscle spasms,I wonder if she could be sedated a bit to help with mental stress as is still knows what going on around her.has anyone used sedation in PSP Thanks Peter

[Railfan]

I haven't heard of sedation used as a form of therapy. There has been some talk about anesthesia increasing the progression. Not sure if near constant sedation would also increase progression.

What I have seen is that activity, such as regular exercise (even if seated), having a beneficial effect on quality of life.

[honjen43]

Hi Peter, sorry to hear this!

It must be hard for both of you, knowing how limiting are Kathy's abilities, and that she understands what is happening.

Are you able to sit close to her and get answers from her, as to why she feels upset, and can you help in any way.

Am sure she must be frightened. Maybe if you can get answers, you can help by understanding on the same level with her, so that you are both at peace with one another and there are no 'secrets'.

Can you give her a little 'joy' on your visit, a smell of lavender, a massage, get something pretty to wear, that makes her feel good about herself, something you know she especially liked when she was well, watch a movie together.

Chocolate was our thing - not lots, just a button or two, or a few bits of a small bar, enjoyed together conspiratorially, he had diabetes.

I hope Kevin will answer you as, of anyone here, he understands exactly what each of you is going through.

Give my love to Kathy. Tell her I think of you both often!

Big hugs to you both

Jen XXX XXX

[Hidden]

Ask them if they are giving her an anti anxiety drug. Larry got Ativan along with morphine. The Ativan was for anxiety. Not sure what this drug is called in NZ.

[Dadshelper]

So sorry to hear about the issues you are having. I'd talk to the doctor and explain your concerns. Depending on the dosage of morphine that may be plenty to keep her from having any mental stress. Morphine is a powerful drug....

Ron

[LuisRodicioRodicio]

Hi Birdman34265!

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...

•Various medications have been tried for pain episodes. There have been some side effects such as confusion and daze, especially with opioids. Currently when an episode of pain arises we use progressively Paracetamol, alternatimg Nolotil capsules / paracetamol reducing Nolotil as get better, Nolotil in capsules, and if the pain is acute Nolotil in glass ampoules orally. All these treatments under strict medical supervision. (Nolotil is “magnesic metamizol”).

I know "magnesic metamizol" (Nolotil) is prohibited in some countries and that, curiously, has more side effects for people living north of the 50th parallel.

Below the 50th parallel till ecuador it seems that it is used without big problems, always under medical supervision.

When verbal communication becomes impossible and even gestures of affirmation or denial with the hands, tongue, etc. represent a remarkable effort on the part of the patient and the caregiver, a remarkable range of groans and moans have appeared that the patient emits with great frequency and persistence, even in dreams during the night.

Ruling out that the patient has fever or is in a painful posture, in the vast majority of cases they do not mean that the patient is suffering from some terrible pain, they simply have a light headache, pain on a leg or an arm and the solution is a "liquid paracetamol" or a massage in the affected area with a suitable cream (Vicks Vaporub has been enough in our case). Other times there are gas in the stomach as a result of a flatulent meal or the patient try to express a desire (to go to the service, drink liquid, hungry, eye drops, too much light or just to get bored, want someone listen to them, talk to them, read them, etc.).

Or.... to be opposed to the main caregiver taking a respite or holiday.

Hug and luck.

Luis

[Birdman34265 in reply to LuisRodicioRodicio]

Thanks for your reply Luis as she in a rest home giving meds through the

rest home could be a challenge as it will have to be approved by the house doctor, Yesterday Kathy when holding hands she stuck her finger nails into my hand ,so painful I had to pry open her hands,I just wondered if she is frustrated by her situation. Thanks Peter

[LuisRodicioRodicio in reply to Birdman34265]

Hi Peter!

Also in our case and occasionally take the arm, hand or clothes with incredible strength. With a little patience and another bit of strength you can let go. We do not know if it is fear, frustration, anger or simply a reflex movement.

[honjen43 in reply to Birdman34265]

Oh for easy access to CBD oil here!

Heard from a friend there is a cream made from cannabis root that is very effective in reducing pain. Will get back to my source and see if I can get more info.

Gather it comes as a byproduct from a crop, so not sure how easy info will flow!

Thinking of you both.

Oh, and see if a nurse can cut Kathy's finger nails a bit shorter!

Jen XXX

[Birdman34265 in reply to honjen43]

As Kathy is still alert she is probably frustrated day after day sitting in the same position,yes I cut her nails and keep them short ,l also put nail polish on for her and rub Aveeno moisturizer in her skin ,her left foot is twisted sideways so I massage her legs to ease the tension. x Peter

[aliciamq]

Wishing you the very best, Birdman😐