Ibby...about 4 years ago I was so ill. Truly. I lost weight rapidly....could only shuffle and could not raise my right arm higher than my shoulder.I was incapable of even putting a clip in my hair. And I thought that this was how I would remain My drugs were changed which I guess helped a little but the real change came when my sister in law visited.She was shocked at how poorly I was and how bad my posture and mobility was too.
So there and then,she decided to do something about it.
Firstly she drew my posture and I was aghast at how twisted my body had become.My right side was almost locked and the strain I weas placing on my left side was phenomenal.It helped to see this diagram as I thought I was standing bolt upright.Not the case. When she actually moved my right shoulder down and put me in the correct position,spine and hips alligned properly I felt awkward and lop sided,I had become used to the position I had held for so very long.
Then she supported my body with carefully placed cushions and began manipulating my limbs.The feeling of freedom as she released my right arm was incredible.After only one hour I was able to raise my arm.
Then she explained how each muscle works in harmony with another...what happens when you walk. ..the different muscles that copme into play and how ,with Parkinsons,you have to consciously be aware of each tiny element that is required to walk smoothly.I spent hours practicing this method,up and down my lounge....being aware of the correct arm swing, heel striking floor first,moving from the hip,counting to maintain momentuml.It was hard work,and took a while to co-ordinate my arm swing with thew correct foot.I had to concentrate so hard and at times my practice sessions ended in tears of frustration.But perseverence paid off and it wasn`t long before I was walking normally,smoothly and could drop the counting./She explained about different pathways from brain to limbs.
Ibby...see if you can have neuro-physiotherapy.We all should be offered this by our neurologists...but sadly they seem to home in on medication and nothing much else,.
I have never looked back.
Hope this helps or at least encourages you to get the right therapist who will explain all these things to you.

Good luck.
Steff

Steffi,
A google of neurophysiotherapy turned up lots of promising people & places for this - all in the UK!
In fact most of the therapies that do appeal to me - osteopaths, in particular - are primarily "over there" from here in the USA. ALso I live in a tiny tourist town in the SE mountains and have to drive 1 1/2 hours to my chiro! That kind of situation. So even if there were any,they'd likely not be here..
I'm wondering what NPT's are called here? ANybody know this? Maybe your sis-in-law knows?
Hey, the UK could be the first stop on the PRT&E...(parkinson's recovery tour and excursion) - with follow--ups in Greece and India. I think Teresa's already siigned up. LOL I am getting my passport renewed.
Thanks for renewing hope, Steffi. I have much to say but my fingers won't do it now. Later then...Ibby

I suggest reading People magazine. It's relaxing in small doses, not as bad as a tabloid [the truth can be amazing enough] and if I hadn't read it I wouldn't have realized that I have something rather important in common with Angelina Jolie and Brad Pitt - we all had daughters born today. Their natural child was born on the 27th of May. I can sense how impressed you all must be.


paula

Ibken, my husband, Rich, is the PWP and he's very stooped, drags his right leg, no arm swing for a long time. He was diagnosed in '05 and I can't remember when these symptons really materialized. It appears to me he exhibited these motor problems before he developed so many psychological problems. Dr. Lieberman had something on his website about concentrating on standing straight and focusing on swinging your arm. He commented on how the Pope had become stooped from the Parkinson's, but that it is possible to change that. I have taken Rich to several neurologists and movement disorder specialists and not one suggested any kind of therapy to help this. Thanks to Steffi, we have some hope of making this better perhaps. Take care of yourself, Maureen

Hugs to both of you.
I feel I must stress [[ha ha ha ..STRESS!!! ] that I can only retell my own story here.I would be devastated if I were to be giving you false hope and that after investigation your individual situations did not improve,your own health Ibby,and that of your partner Maureen.But I have a tremendous desire to fight as hard as I can to try and stay one step ahead of this disease as long as is possible.

Everyone is affected differently.In all honesty,I sometimes feel it quite unfair that I, 12 years into this disease ,am seemingly doing so well when others who have not had the illness as long as me,are suffering so badly.

I can only reinforce the attitude,of "don`t ever say never"
But in my own experience,the neuro`s do not give you the whole picture where other help is concerned.I believe in an ideal world,when diagnosed with any illness...the whole of your lifestyle should be investigated and help offered accordingly;
DIET...I believe we should be offered the chance to see a nutritionalist.
PHYSIOTHERAPY; This should be readily available and on a regular basis.
EMOTIONAL SUPPORT AND WELL BEING; trained councellors should be in place to provide information and emotional support especially as this disease alters our lifestyles so greatly.

Instead...we have to use our very precious and limited energy supplies in foraging out for ourselves and all too often we simply ACCEPT that this is how it`s going to be.
WELL THIS IS WRONG.

Whilst PD affects us all differently I personally will leave no stone unturned either in battling for myself or for other people.I can`t offer the wealth of information that others do here..there are so many knowledgeable people on this board...but I can encourage and hopefully through my own story,still offer that glimmer of hope.

I am able to enjoy a satisfactory amount of hours during the day,engaged in normal activities and indeed,for some of the time,it would be hard to tell i had pd if someone didn`t know my history.I sew,cook,mow a huge garden,dig,plant,cut three lengthy and huge hedges,walk the dogs,run a youth group....RUN....yes RUN...which I was unable to do a few years ago.
I can dance when I WANT TO...not when PD wants me to.I can brush my hair...impossible way back then,put in a bow...undress and dress myself for much of the time.
When I do crash however..I CRASH BIG TIME...but that is a minor detail in view of the world that has opened up to me.

Both of you GO FOR IT. Get that physiotherapy and I will pray with all my heart that you see a difference.
I am also looking into my diet seriously.As has been said on here many times before....what we eat and when we eat has an influence on the effectiveness of our drug absorbtion.
Just keep geting the information and take what is pertinent to you. Try as many avenues as you can.I am enjoying quality life which I didn`t think possible at one time.I actually received an apology from my neuro for the huge decline I suffered.

KEEP FIGHTING. KEEP HOPING.

When muscles are unused,they seize up.There is no reason to believe they can`t be worked and oiled back into life again.It is all about understanding how your muscles work in harmony with each other.

I AM SO WITH YOU BOTH ON THIS.

XXX

I have just arrived home from walking my dogs through my little "magic" wood.The flora and fauna have changed yet again.I am ,like a child with a new toy each visit,for the wood puts out something fresh for me to see each time I go.
First I was walking amongst wild violets and wood anemone`s.The honeysuckle which was ,a few weeks ago,just beginning to put out its tender tendrils in an attempt to cling on to the supporting branches,is now well and truly established. Then there were celandines and campions...the beautiful flowers nodding regally on tall slender stems...and now...NOW....I can`t wait to go back for the dog roses are festooned with buds....the anticipation of photographing these bushes in their full glory just has me aching to go back.I can`t begin to imagine the beautiful spectacle of a myriad delicate roses,injecting their beauty and fragrance amongst the background of greenery.

Just breathtaking and perfect.

No artist or photographer could capture this.Such is the wonder of natures own designers.We couldn`t blend colours and textures like that.

What a privelege.

Then I stepped in dog doo!!!

only kidding but I thoujght I was getting too theatrical.

x

My stressbuster used to be playing ice hockey twice a week with a great group of guys. But I no longer live close to that facility, so that's out.

Now, my stressbusters are going to the gym and getting a good workout in, riding my bicycle, and getting humiliated by women 20 years older than me while I learn to play tennis for the first time in my life.

Finally, my favorite is to throw on the headphones and listen to some music on my iPod. That helps me relax most of all. Love my music...

Gym? Workout? You`re Mr January....ok?

[see Lindy`s thread]

I'd like June if possible because that's my birthday month.

I'll do anything if the $$$ are right. I'm easily bought...

...it looks like you are doing Mr June...and Mr July...and ...er... August...September..Nov....

cos we haven`t had any more takers.

YET