There still is Magic in my world!;-)

[gran5-]

Skipping past all the details, I'm sure I've covered them in earlier entries. This is amazing. This year I experienced my symptoms advancing, sniffle, moan and groan. One of the is what I call the PD bend. That is my body was beginning to curve sideways, sort of turning my erect posture into a C. My PT recommended an assistive device, you know a cane or walker or arghh. I resisted. Then I was in REI and looked at hiking poles. They look much better than canes so I bought a set. Here comes the magic.. Without using a pole (I only use one and do not put any weight on it) I CAN NOT straighten myself. With pole in hand my body straightens itself! No conscious effort on my part. I stand straight!! I do! put it down and I gradually resume my C. Its like flipping a switch. Anyone else experience magic? I'm going to track it down if I can.

[Hidden]

Wow, sounds great. Keep us up to date.

[gran5-]

Glad to. The challenge right now is using a pole when I am home. I need to, tho because the pain grows the longer I do not. Thanks for yr interest

[Dennis]

Yes...I have experienced this for a number of years including pain during that time. PD only makes things more difficult. Mayo suggested surgery. Dennis

[gran5-]

not yet but I will check again J

[CheriH]

gran5, this week I attended my 1st PD support group meeting. I was diagnosed w/PD in the latter part of 2011. It was so difficult for me to get the courage up to attend this meeting; but I did it, and I'm happy that I did! Anyway, long story short, we had a speaker who discussed LSVT BIG physical therapy and LSVT LOUD voice therapy for PD patients. It was pretty amazing. Here is a website that explains the therapy (lsvtglobal.com/). A PD patient who had gone through LSVT LOUD & LSVT BIG gave a testimonial at our support group meeting. He and his wife said the difference in him has been life changing. Let me know what you think. There are also videos on YouTube that you can watch of PD patients who have gone through the therapy program..

By the way, love reading your posts and look forward to hearing more from you.

[PatV]

I want to try the poles. I miss my ball room dancing and sometimes imagine I have an invisible partner. Even on the streets of NYC looks a little odd!

Any info where available? THANKS!

[gran5-]

WARNING be ware.I'm in a rambling state of mind this AM.

Thanks, CheriH, I have heard about a voice therapy but what is the other? I'm game to try anything, well almost. I've just gotten an Rx for PT so I'll check that site before I meet with the therapist.

I have been seeking a support group for a while and this is really the only one that I find interesting and responsive. yippee for us.

When it rains it pours. (Anyone remember the little girl on the salt container?

In my case: First the positives, I checked another support group yesterday and was the only one who showed up! Boo! but I really liked the facilitator. Yay! We seem to have a lot in common, I am one of the dozens of psychotherapists retired to Santa Fe, so I have fairly high expectations of myself and others in that role. AND I may have found a drumming group.

The other side, I had a small lump excised form my chin Monday, no biopsy results yet. My recurrent Urinary tract infection has returned. I may take my laptop and phone to the bathroom and wait for my MD to return my frantic message. Just not fair... all these pathologies banding together to attack.

Thanks to all who read and respond. My writers group will be pissed, however since I've done nothing to present at this weeks meeting, instead I'm chatting here.

Time to see if I can open my mouth enough to try solid food. I've been dining thru a straw since the surgery. I would attach a pic but my vanity will not share my swollen, purple face Tee hee Later y'all J

[kirleyvall]

About walking poles - have found them miraculous in.assisting with

walking - they speeded up my pace and give confidence with balance.

They also make you use your arms and therefore use lots more

calories. Not expensive - do try, but use two poles

This is my first comment as I'm very new to this, but love the site.

Thankyou.

[gran5-]

I might use two if I had four hands! I'm needing to find new ways, bags etc, to carry things.

[kirleyvall]

Me also ! Now have cross the body bag and, another miracle,

this has cured a lot of back pain from shoulder bag I always used

before. I try to wear something with big pockets I can stuff gloves,

money etc in.

[gran5-]

I have a photographers vest with endless pockets for when I walk with my dog. Left hand pole, right hand leash and vest for everything else

[par004]

I too have been through the frustration of needing a "mobility aid" aka a CANE.! But I didn't want the OLD GUY traditional cane. So I made my own and am getting ready to market them on the Web. I'll post my web site when I'm ready.

[wifeofparky in reply to par004]

Looking foward to your cane. My husband refuses to use one while I know it can only help. This may encourage him to get one and use it.

Regarding support groups. That was the first thing I looked for when he was diagnosed. We have a large and active group. I learn something new at each meeting and they sponsor a Symposium each May where researchers, doctors and therapists talk about the best and latest therapies. I'd be lost without them. Ken won't go with me but that doesn't stop me as the caregivers support portion really helps me.