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New normal

This works for me...what works for you?

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New normal    1,275

Hi folks..

 

The forum "family" often share things that work for them. I thought it would be nice to have a single thread devoted to our "tricks" we have discovered peculiar to our situation . This is not intended for people to promote or defend ...just to share..in the hopes some things may help others.

 

I'll go first...and will try keep it short (ya, right) <smile>

 

The first two things that come to mind came from forum members....a caregiver advised me to avoid a lot of struggles of PWP and caregivers is establishing habits. I took that very seriously. Organizing my environment, daily schedule, and sleep patterns have helped me immensely and has reduced stress levels. When the CG's give advice, I listen. Sounds simple..but works.

 

Second, one of our wisest PWP continues to remind us that "acceptance" is the most vital thing we can do. as each day passes and we are aware of change...the skill to accept it..and move on determines if PD is your adversary or if it can become a companion. Life changes when we quit fighting..and begin working with PD...doesn't mean we quit doing everything like exercise and diet etc...but we make life style changes for improving ourselves...not becoming a victim of the dictation of the PD monster. We retain autonomy in that manner..and feel more control.

 

I have lots and lots more...but committed to be brief....now, guys, come forth with your golden "ah hah" moment or your special"cocktail that helped you most so far.

 

Guys??

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hans55    36

I can think of many things, but a real practical is this one: bouncing a tennisbal during walking, tossing it from right to left. It improves my sometimes paralyzing rigidity.I never leave home without my tennis ball...

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New normal    1,275

Hans

 

I ran out of "likes",.... But thanks for that suggestion. That's what I moped people,would,share....maybe the tennis ball is like,the laser beam on walkers...a.distraction....if I am in a tense situation, and tremor starts, I tap a foot or hand to a,rhythmic beat...and it stops the tremor.....I was coloring to 60's music...and I began moving my hand/fingers to,the drum beat and had much more control..hmmmmm...

 

I have added coconut oil,capsules and vitamin B plus daily...which has really helped with cognitive issues...my Neuro suggested it..and takes it himself. He said get it from Amazon and be sure it is a good source.

 

More??

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Darth    2

This is a great topic for discussion! I'll be very excite to read everyone "tricks of the trade". 

 

 For me its music! Put the radio on and just let the music rock! My tremors seem to sync with the beat and oddly its soothing. And of coarse with the radio there is singing along! ( I cant carry a tune to save my life) which help keep my vocal cords work over time. My kids thinks is funny when daddy sings but that's what make it fun too! 

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Buck22    4

Oh ... you mean no fight or flight, but just give in every time? I wish life were that easy. I'm really sorry ... I am trying to play nice. Honest.  You've just made far too many assumptions.

 

Regards,

Richard

Edited by Buck22
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johnnys    460

I try and stay organized by eliminating clutter where ever I see it.I recently have tried lowering my sinemet from 800 to 600 daily and found Im more ambitious and mentally aware.Physically  I'm more rigidity and worse later in the evening.

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MurrayPD2    219

I've found that computer games, such as Everquest, WoW, and other MMPGs, help not just with hand/eye coordination, but mental acuity as well.

 

I can agree with that and see the benefits, but I am not sure wife would believe me. :)  Actually, I like woodwork and outdoor work (when I can), so that doubles as mental and physical exercise.  Thankfully, I got "back on my feet" and was able to return to work; which keeps my mind going well.  However, I am concerned about some memory issues I am running into.  Maybe I can get that to improve.

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PatriotM    807

1. Never give up or give in....FIGHT the PD every day.

2. Keep moving.  The more I move, the better I feel.

3. As David Zid says, a lot of the problems of PD are simply bad habits.  Replace those bad habits with good habits.

4. Don't allow doctors to talk you in to taking medicine before you really need it.  Not only do the drugs have side effects, taking PD drugs will knock you out of many PD clinical trials.

5. Never whine.

6. Live as normal a life as possible.

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hercules957    110

Keep the tremor hand busy.

I use worry beads (like a small large-bead  rosary) I keep it in the hand and absentmindedly move the beads. This keeps tremors away.  

I also squeeze a small ball and toss it from one hand to the other.  If it falls to the floor? that is a bonus; it makes me go get it.  Like Patriot says, the more I move the better I feel.

Knowing that stress exacerbates symptoms, I make it a mission to avoid stressful situations.

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New normal    1,275

Stretching...stretching...and more stretching

 

I have gotten full range back with a locked shoulder...only to have it return when I quit...anytime I am stationery, I stretch SOMETHING...

 

I MAY HAVE A FUNNY LOOK ON MY FACE.....BUT. AM STRETCHING...<smile>

 

More??

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hans55    36

When arm/shoulder and head tremor plays up

I encourge the tremoring, exagerate and amplify the movement. In the end I am vibrating my whole body like Im in some sort of spastic trance. It gives relieve as if the system has released neural energy. I do this only when I am alone however as it looks pretty weird....

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New normal    1,275

Hans...i do the same thing...that is why I don't endorse DBS....my tremors are like a huge energy to be released...if I stop one place it begins in another ...so how can they nullify a specific nerve ending...oops , I digress

 

Be careful letting the energy flow, tho...cuz I eventually went into non epileptic seizures....I stopped that by taking zanax (I know...I hate drugs)...but I can feel the energy building..and if I can't stop by movement or exercise or water therapy...I will resort to zanax... Very small amount.....or valerian root...and stop it. So far I have gone about 3 mos without the seizure thing...but I know exactly what you are saying...and there is a peace when the tremor wears itself out....thanks for posting..

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Discovery    387

Great thread!

 

I find when I'm in a stressed environment a squeeze ball helps my tremor, for example the dental chair.

 

On a day to day I find doing my 2 hour Power Walk then coming home and keeping busy really helps me. I started Colour Therapy. It's mandala and geometric patterns in a colouring kit. It's used to relax and unwind. It forces me to use my tremor hand while colouring the patterns with colouring markers. It's going back in time of trying to stay between the lines!!! I suck at it but I love it!!

 

Keeping active and keeping the mind busy works for me! When my body is in movement I feel great!!

 

Keep on truckin'

Edited by Discovery
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MusicMan    771

I hate when I'm walking around in a store and my right hand is really tremoring, so I will use that hand to swing my keys around on their ring, or spin my cellphone in my hand, or carry the basket.....just about anything works, but I find I have to change it every few minutes or I will begin to tremor right thru it

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johnnys    460

That talk about building energy sounds alot like when i get the jerking movements.I use to feel it more when on ropinirole now a painful twitch will get it going.Must be a misfire someplace in our trillions of miles of neural pathways we have .Sort of similar parallel with how Dr.Low explains nervous symptoms as being a harmless manifestation of a nervous imbalance Talking about Dr.Low brings up some ideas for stressful events.

Some ideas he professes for calming ourselves.

When confronted with making decisions I also ask myself where it will bring peace.

Think,plan and act.

Do things you fear and hate to do.

Any decision will steady you.

Another great gem of his.Men are never satisfied generally with their acts.So when you have done something and walk away with doubt just say it"s average to feel this way and then you can drop it.

Its snowing good this morning,Im going to go riding(snowmobile)later.Our house is rural just orchards and farmland outback.A state trail not far that can take you as far as you want even to Vermont if there's snow,lol  

Hope we get that blizzard up here,nothing more enjoyable to see it snowing sideways

have a nice one

john

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Island Woman    130

Discovery, like your thought about squeezing ball while in the dental chair....got to try that at my next visit...dentist always offers a pillow for my arm or side chair to hang on to but most times I just grab chair arm and try to relax....ha.  I'm lucky he has several patients with PD so he understands.

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swva    81

I have used Chinese Baoding Balls for a couple of days at my desk. No tremor when using them. I need to slowly increase the time sine I got tendonitis several years ago when I bought them.

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My neuro suggested Legos to help with the weakness in my right hand. It had been a LONG time since I had played with Legos. I'd forgotten how much fun they are! I usually don't even make anything in particular, just make color patterns with the blocks. I think it's beneficial mentally as well as physically.

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christie    1,049

I can think of many things, but a real practical is this one: bouncing a tennisbal during walking, tossing it from right to left. It improves my sometimes paralyzing rigidity.I never leave home without my tennis ball...

 

Sounds like a "sensory trick" (a sensory input ) which may alleviate dystonia! Similar tricks include pushing a shopping trolley or even walking backwards  (not recommended!! LOL!!!).

 

What has worked the best for me, symptom wise, is good quality sleep. Even a 15 minute nap may do the trick (no pun intended).

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Peace    160

Walking backwards does work for dystonia (toe curling).  Luckily I live on a low traffic road in the country because that's the only way I was able to make it home a couple times!  Seriously. lol

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MurrayPD2    219

Walking backwards does work for dystonia (toe curling).  Luckily I live on a low traffic road in the country because that's the only way I was able to make it home a couple times!  Seriously. lol

I will have to try that

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