I May Have Parkinson's, But It Doesn't Have Me!

[JanellenGrimaldi]

I can't just sit still. I make it a habit to stand up and do something. And I try to remember to sit and stand up straight. I also keep aware of my breathing--taking good in and out breaths. II have an anxiety disorder as well, which forces me to be mindful of my breath. Patience is a real virtue, especially when one has PD. It is important to be patient with yourself.

I like to keep my energy moving by dancing, singing, playing my viola, or

walking. And I make sure that I use my hands, even if the tremor is present (it's in my right hand). Typing (this) can be a challenge, but I like challenges! I have never been a good typist anyway!! Ha!I

I just choose to keep myself from stagnating by learning new things, and discovering old hobbies like drawing, sketching, writing poetry and journaling. I love learning new things, and it keeps the blues away.

I went into a year-long depression after my diagnosis of PD. I thought that my life was over and that playing the viola, the thing I most deeply loved to do, was history for me. But alas, I overcame the despair, and with counseling and time , I am now continuing to play my music in a whole new way. I am also adding comedy to my performances, and I sing and play both classical and standard jazz and pop tunes.

I also love laughing more than anything else! ahahahahahah

[Hamish]

I really believe this is the best answer xx please talk..thanks xx

[JanellenGrimaldi]

And I refuse to be on meds!! Thanks for the comment, Hamish!!! Cheers and keep golfing!

[BobKuhn]

Something you may want to try his voice-recognition software. This eliminates the problem with typing (which I find very frustrating). I am currently using Dragon Naturally Speaking, and have been for a number of years. It works extremely well and is easy to train. Nothing like having fingers on the keys, however, way better than the frustration resulting from trying to type with PD.

Bob

positivelyparkinsons.com

[JanellenGrimaldi in reply to BobKuhn]

That software sounds great! Unfortunately, I haven't the money to purchase it. I just keep using my hands and body whenever I can. I am a singer as well as an ex-concert violist..I need to use the digits as well as the voice. BTW, I like your blog. It is very inspiring, and beautiful expressed! I shared it to my Facebook profile page!!

[JanellenGrimaldi in reply to JanellenGrimaldi]

Oh this reply was for Bob, BTW!!!

[hilarypeta]

Nice to read your positive approach. I am recently diagnosed and my only tremor is in my right 3 fingers-im very left handed. How come you can manage to play viola? I can hardly do a 5 finger exercise on the piano and mostly type with my lefthand. i knit slowly with difficulty; Is yours like mine only on one side of your body? I do yoga and try to keep stretching-especially calvs and ankles. and trying different steps for coordination. I am in Paris and find it had alone to find any like suffering people.

[JanellenGrimaldi in reply to hilarypeta]

My tremor is on my dominant, right side, affecting my right hand and foot. I find that I have to retrain my right hand in matters of viola bowing.I was a concert violist for 35+ years, and the "grooves" in my brain are well-worn coordination-wise. The vibrations of the music surge throughout my body via the brain, promoting healing. Classical music is very good for coordination and body organization. Try googling "psycho-acoustics". I also stretch with simple yoga moves. Do keep in touch, hilarypeta. And keep trying to use your fingers..everybody has their own unique experience with PD. Also, it is important to see a neurologist with sub-specialty in "movement disorders"....OH, BTW...Tai Chi is good for PD. I am going to attend a class tomorrow...

[hilarypeta in reply to JanellenGrimaldi]

Yours sounds like mine! right hand and ankle. I am looking for hand/foot specialists. 3 of My right hand fingers keep locking. -injections have not helped.Myright ankle will not turn hen raised.

Thanks for all the tips. I will look for the site. My partner plays classical guitar so we listen a lot to music. I will check out the site. I see Michael J Fox has started playing guitar so who knows whats possible. I practice on a typing tutor site but am often lazy when typing normally. Yoga twice a week and stretch everyday .

No one can really notice I have a problem as yet. I am very young for my age and quite zappy but this experience does slow you down a bit. Other slight signs are a bit slurred speech if over tired, more saliva-water going down the wrong way sometimes if drinking without paying attention.. I have to make more effort to swim straight. Right leg feels a bit more heavy than the other when walking-all minor things that getting older brings on anyway.I can still run fast if necessary! And you?

Am going over to UK and seing specialist there over xmas period so will let you know what I find out there. I have a good shiatsu friend and good chinese acupuncturist there who are

good at balancing the sides of the body and improving

coordination.

I think it is quite complex and individual our problem. Interesting reading that when they examine dead bodies of Pd patients they find 30 % never had it! I think we need to look at the whole picture.;chemical balance in body.;hormones.;etc

coordination.

[JanellenGrimaldi in reply to hilarypeta]

It i a complex illness, as is the brain and body.

Acupuncture is a long, drawn-out, and often expensive treatment which I have tried with no discernible results.

I am finding that the movement disciplines such as Yoga and Tai Chi, along with music therapy, (using Toning and Humming), to be the best for me. These help with brain-wave and coordination issues...Good breathing practices are a must. When you hum, and tone, or just sing, you are forced to be aware of your breath. And, it aids in keeping your speech patterns less frozen.

I like your last statement re: the 30% who never actually had PD!! And that we have to look at the whole picture...I am fortunate that I have always been very coordinated by nature. Somewhat athletic, as well. I like to keep rubber balls around and bounce them, and throw them up in the air and against the wall, for hand-eye coordination, for example.

Keep posting!!

Cheers~

JaneEllen

[hilarypeta in reply to JanellenGrimaldi]

I agree with all you have said. I was never athletic though or good coordination-good at running-but very left handed -forced to right with right hand when little. Never got beyond grade 3 on the piano! My brother and my partner are the musicians in the family. Dancing I have 2 left feet but love it and singing-voice not so good since thyroid nodules but am thinking of going for voice training.

I also find EFT useful-some people think it is crazy but tapping on acupuncture points while repeating affirmations does lessen symptoms.

Acupuncture helps me with balance and coordination but have good one in Brighton when I go there.

[JanellenGrimaldi in reply to hilarypeta]

i am familiar with EFT. It is not crazy at all. In fact, It can be effective. Voice training is a good idea, too, no matter what level or barriers (nodules, e.g.)..just go for the release and benefits!! Good to communicate with you about this. I struggle every day, but try not to get discouraged..This online support is good for us!!

[hilarypeta in reply to JanellenGrimaldi]

I find it great support. I dont know anyone who has pd. It makes you feel so alone as it is hard to describe. I haven't told some friends-I feel as if it will scare people away!

I prefer to think of it as a body/mind imbalance which will corrrect itself if I persevere with self healing!

[JanellenGrimaldi in reply to hilarypeta]

Contact the Parkinson's Disease Foundation (PDF) in New York City for referrals to a support group in your country or area.

[hilarypeta in reply to JanellenGrimaldi]

Thanks. I will. Shame you are so far away. When i worked in tv i worked with yehudi menuhin who used to roll out his mat and do yoga during breaks!

Have you tried alexander technique? It was devised by a musician.

[JanellenGrimaldi in reply to hilarypeta]

Yes, I know that about Menuhin. I also just found out that in his later years he had PD....or had developed a shaky tremor in his bow-arm....

Yes I have tried the alexander technique years ago. I liked it.

[hilarypeta in reply to JanellenGrimaldi]

I didnt know about that. He semed a lovely man. Do you have the same feeling as me lke a very mild electric current going down yourr arm when you try to relax the problem side? It will never relax as my lhs.

[JanellenGrimaldi in reply to hilarypeta]

What is your "ihs"?

...My problem side, which is my right side, relaxes when I am lying down.

[hilarypeta in reply to JanellenGrimaldi]

what is an ihs? I relax but at yoga class he lifts one arm up and drops it-one side falls much faster than the other. I feel like there is a current always in the bad side-very slight!-maybe its a tingling? but there alll the time-is that a parkinson thing?

[JanellenGrimaldi in reply to hilarypeta]

Could be. Don't know..I don't experience that, but we are all unique in how the illness manifests itself..

[JanellenGrimaldi in reply to hilarypeta]

Maybe it will correct itself. We don't know. The best I hope for, is for a slow progression of it, and then a for a cure to be discovered!!

[hilarypeta in reply to JanellenGrimaldi]

There have been plenty of people who have recovered from degenerstive diseases. I believe it is possible. Just do our own research exercise, diet and keep positive!

[JanellenGrimaldi in reply to JanellenGrimaldi]

If there isn't a Tai Chi class in your area, there are numerous DVDs that give the basics. I use them when I can't attend a class...

[jillannf6 in reply to JanellenGrimaldi]

Hio

i think TAI CHI is great for balance and wel being and go to a class onc e aweelk

eveyrone has some health issue as it is 4 the over 55s

lvoe jill

and

[JanellenGrimaldi in reply to jillannf6]

what is Ivoe?

[dryoung]

Tremor may be final step to be improved.

But I believe emotional things like anxiety or depression or weeping can be controlled easily by acupuncture(my case is magnets instead of needles), emotion is one expression from insides, when liver has problem, they get angry easily,

I am in LA practsing, specializing in PD,

Anyone of PD can get 3 free treatments.with this benefits, you can experience something like miracle, why not?

dryoungpd.com/dryoungparkinson on yutube by MagnetCM

Thanks

Young

[cowmom27]

Your heading caught my attention as I frequently say the same thing---as yet I haven't had time to join groups associated with PD---retired in April from nursing after 46 yrs, did some major late-spring cleaning, met someone after remaining indepently alone for 15 yrs following a divorce, decided to sell my 3 level condo and move to a 1 level rental in a 55+ community with the new man in my life, planning an engagement party for my daughter who lives in Switzerland but will be home for the holidays with her Italian fiance' and his family who are making their first visit to America and looking forward to an August 2012 wedding in the Tuscany area of Italy. I keep myself busy sewing gifts, crafting, putting together gift baskets--as long as I take my mediations as needed I am doing well.....it's been 5.5 yrs since my PD diagnosis and I may have it....but PD doesn't have me...AND wont as long as I am able to laugh at myself, enjoy life and accept that I may feel 'normal' when I'm sitting but knowing once I stand up I may have to take a minute to get my balance or tell 1 of my feet to move......humor is the best medicine. Gail

[JanellenGrimaldi in reply to cowmom27]

Hi Gail!

Humor IS the best medicine !! It is my main coping skill. It really helps with keeping things in perspective!!! I laugh at myself all the time and am so pleased that you do the same thing. We get into trouble when we take ourselves and our imperfections, or infirmities too seriously.

Your sharing of the fact of meeting someone after being alone for so long is inspiring. I have yet to hook-up with the "right" one for me. I have always been married to my music, and always will be, even when and if Mr. Right appears!! ha!!! The important thing is to enjoy life as it presents itself. Even with chronic illness, etc..

Best,

JaneEllen

[hilarypeta in reply to cowmom27]

Very positive-I think keeping busy like you helps-there always has to be a balance! when I do too much I get nervy and shaking-the day after an exercise class etc;;I always try to plan nice things t lok forward to.

I am with a french man for 12 years now. He is 19 years younger than me and that on the plus side keeps me young but sometimes presents problems when I am slow.;we have tried breaking up several times but we always bounce back!.

I get down if I wake up at night and do meditation and tapping. I find the it frustrating trying to knit etc with my unwilling right hand but laughing it off and being positive is half the battle!

[JanellenGrimaldi in reply to hilarypeta]

Balance!!!!!!

[hilarypeta in reply to JanellenGrimaldi]

inuk now-find journeys more troublesome -it takes longer to recover mentally and physically. Will see what uk drs say after xmas- Have a happy time! Its easier here than in Paris; am house hunting! keep moving and smiling! x

[JanellenGrimaldi in reply to hilarypeta]

Happy New Year, Hilary!

Hoping you are doing well this new year.

[JanellenGrimaldi]

There are alternative treatments out there!!!I have started working with an herbalist for my PD tremor in my right hand. She has started me on a tincture of Passion Flower. It is a "nervine" herb, which can have positive effects on the tremor. I have yet to regulate the dosage; i.e. so many drops of the tincture in a little water. Eventually I will find the right therapeutic level. It is a safe alternative to the dopamine agonists that are regularl prescribed.. I have more faith in this herbal treatment than in the major "big Pharma" meds. At least as far as I am concerned, and at this point in the progression of my PD. It may not be for everyone with PD, or for every stage.

This herbalist is quite reputable in my city of Eugene, Oregon. She really knows her stuff. For now I am putting my trust in her and giving this a try. There are no bad side-effects, (unless you use too much, which will just make you feel "high"), so it takes some paying attention to your body to notice when the dose has reached the right level.

I am also going to resume acupuncture..So onto a new phase of dealing with this dis-ease.

[hilarypeta]

Happy new year,! Thought i had lost you. Kept trying to get through to you on the site but i couldnt find you.!

I am staying on in england at present with my son. Also trying acupuncture. Taking co enzyme Q10 and vit e and trying to eat more foods with dopamine init like avocadoes.

Went to beatles musical last night in london and stood up to dance..found co ordination ok when i forget i have the problem..music seemed to take me back to how i was..found the same when becoming happy and animated symptoms better...speech clearer..

I shall have to find a herbalist. I have friends in india.saw there was possible herbal cure there so will ask them.. Take care

[hilarypeta in reply to hilarypeta]

Also trying chiroptractor recommended..saw a uk orthopaedics sp and he said my shoulder still a bit frozen, my 2 or3fingers that get stuck need an op and nerves in neck need testing...more appts to come. Also referred me to neuro as wrist a bit stiff...see if i get a pd diagnosis in uk..have had 3 in france,!

[JanellenGrimaldi]

Good to hear from you!!

I am going to start physical therapy for my right foot for an achilles tendonitis..that may be PD related. My right foot is stiffer that my left due to the PD. The PT I will be working with is great! I worked with him a few years ago for my neck/curvature and arthritic condition before the full PD onset. And I just found out that he has a sub-specialty in working with parkinson's patients, which is very cool ! My right hand was already starting to shake back then (in '08), and I thought at the time it was a side effect to some psych meds I was on at that time. ...if only it was that simple, but once I stopped those meds I still had the tremor and the rest is history...

Glad you danced! Music and rhythm is a great therapy for me!!!

Good luck with everything your are trying! Stay in touch!

[JanellenGrimaldi]

Playing with bouncing and catching balls, and working on improving my gait with a physical therapist!!! I intend to stay MOBILE and will not be an invalid!!!! Yay!

[Ryan12]

i RECENTLY JOINED THIS WEB SITE (NEW KID ON THE BLOCK) HOPE YOU ARE STILL DOING oK AND THAT YOU CAN GET IN TOUCH [e-mail]