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By VioletV On 2014.04.01 17:01
After seeing this abstract on PubMed, we are going to try seeing a clinical hypnotist to help with tremor and sleep.

http://www.ncbi.nlm.nih.gov/pubmed/23427841

I'll keep you posted!

VV

By Freespirit On 2014.04.02 12:15
Thank you.
I will be interested to hear about your experience.

By jcoff012 On 2014.04.02 22:50
Unconventional, but who knows? My only comment is that I went to a hypnotherapist to lose weight and it didn't do much other than I felt relaxed when I woke up! Was supposed to make me dislike Cokes...lol...Such is life...

Carl's tremors cease when he is asleep...I guess maybe they are internal, but outward signs are not obvious. Why I never mind all of his naps, etc....I see them as an escape. Jane

By makrivah On 2014.04.02 23:03
Jcoff, when he naps, does he sleep in the bedroom, in a chair, on the couch? Watching tv?

By LOHENGR1N On 2014.04.03 00:29
With Parkinson's our tremors stop while sleeping. Without getting too technical at the base of the brain where the brainstem is people have a "switch" which when we sleep turns off most of the orders dealing with movement so we don't spend all night every night acting out our dreams. So to all you caregivers out there (don't tell your parkies I told you this) if you want to know if We're pretending to sleep ignoring you look for tremor if it is there we're not sleeping if it isn't there we're asleep ;)

With the hypnosis I'm leery and troubled. I read the statement and it is based upon the results of one individual. With hypnosis generally it is a habit or learned action trying to be corrected. Smoking or over eating or eating to feel good etc. The tremor is because of the disease and faulty wiring in our brain not faulty thinking or learned behavior. When some of these therapies come up and are put out there online I think back about all the strides made in recognizing diseases like Parkinson's tremor isn't because we're nervous or scared, Turrets isn't tic's and noises because we want attention, Wryneck (the twisted neck and head turned to one side or the other) isn't because the person can't or doesn't want to face the world or life in general. These were explanations for these diseases and conditions not too long ago. All these problems were thought to be in the mind and faulty thinking or abnormal thinking. Patients fought long and hard to get these recognized as the physical diseases they are and not a psychological disorder leading to better treatment and care along with medicine that helps and addresses the disease. I do worry when Doctors or medical sites put these things out there. I worry about things sliding back to an "it's all in their head mentality or medicine.

I hope I didn't offend anyone with my rant I don't mean to or want to and everyone has the right to try something if they think it may help. It's just been weighing on me since I read the statement on the site and it said one individual and they have the nerve to post it as promising. Sorry I'll get off my soap box now. Take care, best of luck and hang in there

By carman96 On 2014.04.03 08:06
Yeah, I agree with Al. One person does not make a study group.
I don't think hypnosis is bad, and it could possibly help with anxiety, similar to meditation.
However, you need to be someone who is easily hypnotized and keep it going, by self hypnosis or regular visits to the hypnotist.
I think everyone should try anything they think will help them. I'm quite sceptical about it helping tremors though.
Let us know how it goes, Violet

By jcoff012 On 2014.04.03 12:29
Thanks for explaining, Al...I figured it was something like that...I have seen on the forum how some resent the napping, but I don't...Yes, it gets very quiet and lonely, but I also use the time to read the forum, clean, rest myself, or do things that make me feel better! I see it as my time...when Ngel is gone, he naps in the morning and in the afternoon...If he is watching tv at night, he can doze off in front of the tv, too...

Carl and Nigel, our four year old grandson, take a nap from 1:30-3:30 daily. Carl is usually lying flat on his back on the floor because he still has a tremendous amount of pain in his back and shoulder. All the therapies and meds haven't helped...we go to UCSF in two weeks, so I will be sure he tells the neuro that nothing is working...The neuro told Carl that pain is part of PD, but all he is able to do to successfully "treat" it is by prescribing pain killers...and Carl is adverse to taking too many meds...the anxiety pill at night seems to help him sleep better, so he doesn't want to add more meds...go figure, huh?

As for the hypnosis, I tend to agree with Violet and Al. As I said, my experience was for weight loss by a suggestion of disliking Cokes...didn't work, but I felt relaxed when it was over! lol

I think part of everyone who is a caregiver's problem with PD is the need to search for anything and everything we CAN try...in the hopes it will be an undiscovered remedy or cure...that is part of the human need to help or "make things better"...

Take care. For all of the positive comments I make on here, today is NOT a positive day for us...Carl is not doing well today and it saddens me to see him becoming a shadow of his former self...Not to worry, this will pass...He is determined to be as happy as possible for as long as possible...maybe that is why he "fools" everyone but me that he is "ok"...Hugs to all, Jane

By jcoff012 On 2014.04.03 17:48
....Bouncing back....It is several hours later and after I went to the store and bought a handheld bubble "gun", I bundled up both "boys" and we went outside and "shot" bubbles! The laughter, running jumping, and Nigel's pure joy and abandonment chasing the bubbles were wonderful to watch and feel!

Amazing how just a simple change of scenery and a $6.00 bubble gun can MAKE one's day better...

That, and a beautifully kind note from our PD mentor...You know who you are...Love you, My Friend...When God gave you PD, he did it for a reason...I know that is hard to hear, but I truly believe that some people are placed on Earth to help others through difficult times. So, thank you....In case you don't know, I always save your notes....they help keep me positive...

I am glad I have this forum on which to post...even if I don't post as often as some, I read everything daily...and my heart goes out to those of you who have faced this disease for so many years...you are amazing...Love and hugs to all, Jane

By VioletV On 2014.04.04 14:43
Good conversation here.
I understand the concern that caregivers may constantly chase the magic bullet that will relieve their PWP. Certainly we are aware of that temptation. But the idea to pursue hypnotherapy for sleep comes from the fact that my PWP cannot tolerate Xanax or Melatonin or other sleep aids. And, when he wakes at night he gets panicked at the idea that he won't get back to sleep -- and that creates a downward spiral of tension, worry and wakefulness.

Al, we are aware that the paper was a single case study. All it says is "I tried this with one patient, and he said it helped him." Not a research finding at all. And, you are right that the old ideas that the symptoms of PD were psychologically determined were very harmful. We have no illusions that hypnosis will "fix" PD. But we are hoping that hypno-therapy will give him the ability to calm himself during these sleepless nights, so that he feels better, even if he can't immediately go back to sleep (and on a rough night he can ask me to wake up and change his position six or eight times between 1 am and 7 am--leaving us both exhausted).

We had the first visit to the hypnotherapist yesterday. While he still woke up several times last night, he was noticeably more calm at bedtime and seemed to have a less stressful night. We'll give it 3 or 4 sessions before coming to a decision.

CC

By McCall On 2014.04.05 11:47
My experience with Hypnosis was for Childbirth. I was able to control the pain and have a good experience. This was after the first three times being Harrowing to say the least, I was terrified by the fourth time and so decided to use the hypnosis route. It worked extremely well.
My fifth child came out before I could even do anything.
Point is it is not just for losing weight or stopping smoking etc.
if you are good at the self hypnosis you can even use it to slow blood loss if you are injured and things of that sort, though I grant it takes a lot of self control to do that in an emergency.
I don't know if it would help with PD symptoms but I would not rule it out.

By VioletV On 2014.04.09 10:32
Session 2 of the hypnosis is tomorrow.
First impression:
My PWP is less anxious at night. Waking about every 2 hours, using the urinal, but now going back to sleep almost immediately.

Also to be noted. We had decided to sell our little daysailer after we didn't use it at all last summer. But my husband now is envisioning going out (with a 3rd hand, mind you). We went out in the car on an errand, and on the way back starting scoping out launching sites. He's been sailing little boats since he was 12, and is a really expert seaman. We will see.

By carman96 On 2014.04.09 21:53
That sounds promising.

By VioletV On 2014.04.19 08:07
Progress Report:
After three hypnosis sessions I notice that my PWP husband is subtly but genuinely, less anxious in lots of situations. For example, we are able to drive for a longer time without his being jumpy and uncomfortable.

Interestingly, after the first two sessions I found MYSELF sleeping so soundly that I could not wake up enough to help him. So, going forward I will not sit in on the inductions (when she actually does the hypnosis proper). I am very hypnotizable, it seems.

We have had better nights' sleep: my PWP seems to go back to sleep more easily after waking. We've still had some restless nights. But, most notably, one night after the second session he slept for 4 hours, then 3 hours, and last night he slept from 10:30 until 4:30 this morning--6 hours!!!--then from about 5 until 7:15. This is UNHEARD OF in our lives. I feel like a new woman with a night of uninterrupted sleep.

I don't anticipate that every night will be this successful, but just having longer intervals of sleep and knowing that he will go back to sleep more quickly and not need a long period of adjusting and re-adjusting of his body to settle down, is a wonderful development.

So, for us, I think hypnosis is a gentle and gradual success. Not a miracle cure, but another element in our helping him to be as well as he can be given the stage of his PD.

EDITED TO ADD while I first thought that it takes fairly intact cognition for hypnosis to go well I did a bit of quick online searching to confirm this guess-- and I was WRONG. It seems there may be a role for hypno therapy for anxiety, ADLs and other issues for people with Alzheimer's dementia. Could be valuable to people with PD?? Don't Know.

I'll post another update in a couple of weeks.

By daisy On 2014.04.19 09:50
VioletV. That's great news. Doesn't really matter how or why it was researched. The main thing is, if it helps at all, keep doing it and hope it continues to work for a long time.

Sleep is so essential for the PWP and the caregiver. Like you, my DH was up 3 or 4 times every night. Thankfully, his medication has changed now and we have a happy situation where he usually gets 3 - 4 hours uninterrupted sleep most nights. I really don't know now, how we lived through those years and my heart goes out to anyone still enduring those kind of nights. I wish you many nights of "Sweet Dreams".

By carman96 On 2014.04.19 17:48
I'm glad it's helping. How did you find someone who does hypnotism and how much does it cost?

By VioletV On 2014.04.19 22:35
After I saw the article that I linked in my first post on this thread I started looking. My husband's acupuncturist is a physician (D.O.) and teaches in the Integrative Medicine department in our local hospital.
He recommended the person we are seeing for hypnotherapy.

There is no licensing for hypnotherapy in most states, so you have to rely on recommendations from people you trust. I would only use someone who works in a medical setting or in collaboration with physicians etc., and is accustomed to working with pain management, anxiety and may do work with hospice or cancer patients.

Our cost is $100 per session. She told us that it usually doesn't take more than 2 to 3 sessions to give a person what they need. But it may be different in different situations. I am sure that medicare would not cover it for insomnia, but we might be able to take it as a medical deduction on Schedule C. (Can you tell I've just been working with our taxes this month?)

By LOHENGR1N On 2014.04.20 09:13
Violet, I'm glad your husband is getting some "tools" to help with the sleeplessness and anxiety. When I commented above I wasn't thinking that he wouldn't. In this sense (sleep / anxiety issues) it could help. What I was trying to say was the tremor is a whole other ballgame. However as usual there was a breakdown of conveying that. It happens quite a bit on the forum as one reads they form opinions stop at words they don't like and I'm a naysayer. But I digress... Again I'm glad you're both getting some well needed sleep. Take care, best of luck and hang in there.

By VioletV On 2014.04.24 17:09
Al, thank you. Yes, my husband is indeed getting new tools that have helped to ease the sleeplessness and anxiety.

My comments, in response to you were intended as much "for the record" as to you individually. I think of these postings as being an organically developed reference for people coming in long after we have finished a particular thread. Our thinking about hypnosis was specific, and I figured someone else might do better if they understood how our experience was related to the initial plan-- to manage one difficulty.

I was talking to a woman in my exercise class today, and realized just how much my PWP husband has taken to the various strategies that help to maintain wellness at whatever his current stage of PD is. He is a "mensch!"

Also, I want to add another update. The sleeping slowly (and erratically) seems to keep improving. One night this week we slept from 2am until we were awakened by his 8am pill alarm. Again this never happened before. And, last night, a minor miracle.

He was having trouble getting back to sleep (as I said, it is irregular and erratic, the sleep improvement) and he decided to try to get up and use the urinal by himself. He did, getting himself out of bed on his own (tho he did have to wake me to give him a little push at one point). He insisted that I not get up to help him, used the urinal and emptied it by himself. If nothing else, these small improvements boost his sense of efficacy. And PD takes away so much of that -- even a small and temporary victory calls for celebration.

VV

By VioletV On 2014.07.27 14:56
Update on sleep . . aka procrastinating when I have 3 powerpoints to prepare. . .

We've continued to see the hypnotherapist about once every 8 weeks or so. Our nights are SO much better -- my PWP husband now typically sleeps from 11:15 to 4 or so, with an occasional night of more than 6 hours at a stretch. He is not anxious at night, has many many fewer bouts of confusion (where he didn't know who I was, or where we were and needed help to bring him back to the present). I am sold on the advantages for us.

The side benefit of his being less of an anxious back-seat-driver in the car? Priceless.

VV


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