My wife was recently diagnosed with PSP & we’re wondering if cbd could help with speech balance & swallowing. Or are there other remedies?
My wife was recently diagnosed with PSP & ... - PSP Association
My wife was recently diagnosed with PSP & we’re wondering if cbd could help with speech balance & swallowing. Or are there other remedies?
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cdecker735
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My husband is on cbd. But I only put him on it, as appointments were months and months apart and not helped due to the fact we had a new consultant. At this point he was only on siminet and he was declining. And I felt I had to do something. All neurological medics will say there have been tests (which are on going) but there is no proven evidence it works as yet. Speech and language therapy is the proven option for speech and also swallowing. And personally the cbd hasnt helped my partner in this area as far as I'm aware. And I'm sure not in the balance either. But what it did help with was his breathing was like Darth Vader at times normally when he had just woke up. It did stop that. And I think it has helped with anxiety. Some say it helps with sleep? cant say it did for my husband? Only advice I can give is try it and see? But please dont expect a huge difference, it doesn't happen (well in my experience) Love and hugs to you both x x
My dad’s balance has significantly improved since doing exercises at the gym- my mum makes him do them every day as lots of them don’t require any equipment
The speech therapist who worked with my mother had her use a free app (great for iPad) called TalkPath Therapy by Lingraphica which has easy to follow speech and cognitive exercises (she did need someone to guide her through it). She also gave her a device called the Breather (you breathe with some force in and out through it and it has adjustable resistance) which is supposed to help exercise the swallowing muscles as well as breathing muscles. Unfortunately my mother couldn’t follow the instructions to breathe through the device due to both cognitive and motor problems. But those were the therapist’s offerings; they are easy to try, and they might help.
Hi. I have tried lots of CBD oils and potions and none of them helped me with sleeping or pain . They can be quite expensive so that’s the reason for my negative reply , sorry . Maybe people have had more positive results ! I did a yoga class every week until lockdown and that helped with my balance and I in fact got an arm which wouldn’t behave , working again .
Don't have high expectations for CBD oil. It may help with some pain or anxiety, but is not a panacea for all issues. However, no two people will experience PSP the same and your wife may benefit from it, it won't hurt to try. Speech and swallowing concerns need to be addressed by an SLT assessment. Exercise (like yoga or pilates) should help with balance and mobility - get her started on a routine sooner than later. I know it's a cliche, but where muscles are concerned " move them or lose them."
Tim
Hi cddecker!These are our experiences on Communication:
One of the symptoms of PSP is that its speech becomes slower and more difficult to understand but generally its intelligence remains. I reproduce some reflections of Kevin_1:
“As the illness develops their mental processing becomes slower. That is they think slower, but they still think as adults and draw on a lifetime of experience and most likely using all of that wisdom which comes with it. So the way to speak is in a straight forward manner, not fast, simple language, but not slow as if talking to an idiot as in a movie, and to give them time. Ask them of they understand if it is complicated and if they want you to clarify anything. This is basic good communications practice. It works.”
For a time we attended sessions with a speech therapist until the disease progressed and no advantage was obtained, at the same time we combined it with exercises at home with a "Breather".
On our case, we intend an App but It was not possible to use it for more than few months. As her dexterity deteriorated, she had problems placing her finger on the appropriate word or letter and we were able to buy a plastic screen cover that had an opening for each key on it; this helped to direct her finger and keep it one the right letter. Another problem she developed was the inability to tap her finger in a key or letter, and as such she would often have several letters in a row. For example if she tried to tap the letter A, it would show as AAAAA because she could not get her finger off the letter A quickly enough.
Some have successfully used for some time a cheap iPad plus free software text-to-talk program called Claro (claro.com) with a BigKeys keyboard that attaches to the iPad through an Apple device that is used for connecting to camera to an iPad . A voice comes from the Claro program. It's like a GPS voice.
On our case we have used a plastic laminated A3 sheet with the alphabet in large letters (40x40 mm) supported on a music stand at the height of the patient's eyes. She points to the letters and another person writes on a blackboard the letters that she indicated.
You can also prepare "communication panels" with the alphabet and some pictograms that patient can be marked with a pointer. Up to the present time it is the best system we could find. Over time the pictograms become useless and it is necessary to use only letters, as large as possible.
Speak to the PSP patient as you would anyone else. When it comes time to ask a question try framing it to a yes or no response. It's not that the question is hard to understand but forming/finding the words for an answer may be difficult.
The communication with a patient of PSP is one of the most difficult problems to overcome.
When the patient can still verbalize it is important to know that saying NO requires less muscular effort than saying YES.
When verbalizing is almost imposible and the “communication panels” don´t work, to say YES by showing the thumb from the fist and saying NO by hitting the fist on a surface could be a solution. Alternatively taking the ”more active” patient´s hand and establishing that a squeeze is YES and no squeeze is NO.
There will come a time when the answers are slow and even erratic. In this case, it may be better to prepare the patient and tell that you are going to ask for a response later to a question that you are verbalizing at that moment. When the disease progresses, the response is slower, until making a thumb gesture or squeeze your hand may need at least 20 seconds.
To write down a big YES, NO on a sheet of paper and the patient could point to the correct one seems to be a good alternative.
When all fails, sticking out the tongue to indicate "YES" can be a solution.
Recently there has been an information related to ALS: Voice & Message Banking (Susan Mast ALS Foundation) that may be applied to patients with PSP.
Ni cdecker 735 again!Our experiences on cbd oil were moderately positive:
We used 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
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