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proudest_mama
06-18-2007, 10:42 PM
Hey everyone

I hope I'm back. My computer date and clock were off, so whenever I posted something it went to the bottom of the pile. Frustrating to say the least!

I've been on Mirapex and Artane for over three years now. Artane has served its purpose, but admittedly, it messes with my eye sight and my confusion. I was also taking a pretty high dose (12 mg. a day).

Since then, the neuro prescribed Azilect. I was able to cut down the Artane to half, and perhaps even less than that.

But now I have a different issue which I don't know if it's is due to the medication or the disease.

On my right foot, my big toe curls and takes the next toe with. Because of this, my gait is throwing me off and I'm in serious pain from my buttocks to my toes. I need stock in Icy Hot packs!

I did go to Physical Therapy, but they honestly were stumped, never having had a PD patient before. It doesn't help that on the day that I had the appt., I had no pain! They were truly super, however, and gave me some exercises that I should do ... could do ... need to do ... but am too lazy to do! At the end of the appt., I agreed to call when I am experiencing pain so that they can isolate it.

In the meantime, the best thing (other than Icy Hot packs) that helps is wearing some type of sandal that doesn't allow the toes much room to curl. I look pretty pathetic weeding the garden in heels. LOL Initially, the first time that I wore tennis shoes helped, but there's simply too much room for the toe to curl.

Have any of you experienced this? The neuro (intern) told me that it would take a pretty big dose of Sinemet to combat that. I'm not sure why, but I have another appt. with the neuro on Thursday so I'll ask. I was also told about possibly having botox injections.

Any help, suggestions, or words of advice (other than exercise ... LOL) would be appreciated.

Here's hoping I'm b-a-a-a-c-k for good!

Terri




reverett123
06-19-2007, 05:21 AM
terri-

first thing in the morning, my left toes try to tie themselves into knots. after 15 min or so they stop. seems independent of medication level.

rick

vlhperry
06-19-2007, 09:33 AM
I would also support what Rick says. My feet started out early in the disease getting Charlie Horses that curled my toes under. Eventually when my meds wore off my toes would curl under when my meds wore off. Now I have callouses on the tops of all my toes because my toes curl all the time.

Being a Tomboy personality, I took my doctor's advice and wear "grandma shoes" and wool socks all the time. I never was very good at fashion and never bothered trying to use any "girlie" tricks to make myself look better. As Popeye said, "I yam what I yam and that's all that I yam." I prefer to be comfortable so the doctor's advice was easy for me to follow.

For others it causes heartbreak because they feel as if they are losing a major part of themselves (their feminitity.) The doctor said the reaction of my toes curling under the name of dystonia. Not dyskenisias, which are movements caused by using too much Sinimet, causing involuntary gestures.

Wearing tighter shoes in an effort to press the toes down will only cause you unneccesary pain. Your toes will still want to curl, and your shoes will develop bumps on the tops from the toes pushing them up.

Since Parkinson's causes danger of falling, high heels are not the most reasonable type of shoe to wear anyway. They can only increase the risk of falling.

Vicky

proudest_mama
06-19-2007, 10:27 AM
VIcky and Rick,

Thanks for your quick replies.

Rick, my feet seem to get worse, not better, as the day wears on and, Vicki, you and I are soul mates and don't know it! I, too, could care less about fashion! My daughter somehow falls into a category all its own, in between the two ... (high maintenace and tomboy). It's a perfect combination.

I don't think I described the heels accurately enough. The heel is a one inch block so I'm truly not teetering and ready to fall. I'm going to look for a gel insert of some kind to take up the room in my tennis shoes so that I can wear them instead.

As I said, I see the neuro again on Thursday and will inquire about it then.

You guys are the absolute best! I can't remember which post I read, but it commented on our upbeat personalities and humor. No, we all occasionally wallow in self pity and, when that happens, a friend from this forum always, always, always rally's to help.

I hope everyone has a good week and thanks, again, for responding.

lou_lou
06-19-2007, 03:32 PM
Hey everyone

I hope I'm back. My computer date and clock were off, so whenever I posted something it went to the bottom of the pile. Frustrating to say the least!

I've been on Mirapex and Artane for over three years now. Artane has served its purpose, but admittedly, it messes with my eye sight and my confusion. I was also taking a pretty high dose (12 mg. a day).

Since then, the neuro prescribed Azilect. I was able to cut down the Artane to half, and perhaps even less than that.

But now I have a different issue which I don't know if it's is due to the medication or the disease.

On my right foot, my big toe curls and takes the next toe with. Because of this, my gait is throwing me off and I'm in serious pain from my buttocks to my toes. I need stock in Icy Hot packs!

I did go to Physical Therapy, but they honestly were stumped, never having had a PD patient before. It doesn't help that on the day that I had the appt., I had no pain! They were truly super, however, and gave me some exercises that I should do ... could do ... need to do ... but am too lazy to do! At the end of the appt., I agreed to call when I am experiencing pain so that they can isolate it.

In the meantime, the best thing (other than Icy Hot packs) that helps is wearing some type of sandal that doesn't allow the toes much room to curl. I look pretty pathetic weeding the garden in heels. LOL Initially, the first time that I wore tennis shoes helped, but there's simply too much room for the toe to curl.

Have any of you experienced this? The neuro (intern) told me that it would take a pretty big dose of Sinemet to combat that. I'm not sure why, but I have another appt. with the neuro on Thursday so I'll ask. I was also told about possibly having botox injections.

Any help, suggestions, or words of advice (other than exercise ... LOL) would be appreciated.

Here's hoping I'm b-a-a-a-c-k for good!

Terri

dear terri?
you have a bothersome thing called dystonia -ouch -ouch!!
maybe we breathe too shallow? or after the pain is soooooooooooooooooo
intense, we aren't breathing at all -
first try this breathe and try to think on peaceful things -I will crawl to the table and reach for my bottle of calcium / magnesium and vitamin D it comes all together in one capsule complex the brand I take is called Natures Way-
then you might wish to lie on the floor or bed face down or on your left side,
after you get yourself to deep breathe- Paula suggested this to me in a post, a while ago -she was rightooo!! :D

I feel stress brings on many things
possibly you may have eaten and are now in need of more sinemet...
I pray... and try to get peaceful, I might even have a small glass of merlot.
or if not merlot -whatever wine I might have opened in the fridge...
just remember if you take any drug that calms you down -the small glass of wine will make you feel twice as tired...

peace -to you and your body! :hug:
my dystonia is in my toes and lower back if really stressed out -
when my spinal cord feels like my body is trying to be ripped in half,
and then the neck and shoulders...

ZucchiniFlower
06-19-2007, 05:52 PM
Baclofen does wonders for my foot dystonia. I've mentioned before, so I won't go in to much detail now. Without baclofen, I'm really disabled and can hardly walk. My knee gets out of whack, because my foot turns inward and toes curl under. Very painful!

adelle
06-20-2007, 08:24 PM
Toe curls are serious because they make balance much worse and can lead to pressure ulcers on the ball of the foot. My husband's neuro has given him Botox injections, which have relaxed the toes. On the right foot, his great toe curled upward and the second toe curled under. However on the left foor the woes are all curling under. The Botox has made a great difference in his legs feeling more relaxed, better balance for the few transfer steps he can take, and all the ulcers have healed. Is this a treatment option for you?

Venice
06-20-2007, 08:28 PM
Hi Proudest Mama,
My mom has a terrible problem with toe curling and has never taken Artane. I'm quite sure it is part of the PD.
SHe has had great relief from getting shots of Botox into the affected area. I believe it is covered by her health insurance.
V

Teretxu
06-21-2007, 02:45 AM
Terri, aren't you taking any Sinemet at all? Half a tablet of Sinemet 25/100 will make your toes relax in 20 minutes and do away with all other PD symptons into the bargain.

However, there is also the phenomenon of too much Sinemet, that could also cause "peak-dose dystonia", contracting your muscles and leading to toe curling.
It happened to me once while driving and I was forced to pull over on the expressway...a pretty stressful adventure.

JACKMANA
06-21-2007, 10:20 AM
Terri,
I have the same problem in my left foot. My neuro prescribed Lyrica which worked but piled on weight. I now take 20ml Amitriptyline at night & this works for me. I've seen a podiatrist & use orthotic insoles which also help, as does using my cheap footspa in the evenings & 'walking on the spot' on my wobble cushion.
I hope you find some of this useful.

stevem53
07-16-2007, 05:21 PM
Im starting to have a problem with this recently..I notice it most when Im out in my boat..It feels like my toes are trying to grip the floor..Its hard to explain..but its weird..It feels like a natural reflex, and it certainly isnt..I remember reading this thread and a few days later I started to notice it in myself..:confused:

aftermathman
07-17-2007, 09:34 AM
seems to happen irrespective of drugs (Mirapex and Stalevo), when I get up in the morning it comes, stays for a time then goes, not to be seen until the next morning.

Luckily only lasts 5 mins (at present) and is limited to shortly after my getting up in the morning.

Is worse if I have exercised the night before.

Neil.

shcg
07-17-2007, 10:19 AM
I guess we could discuss just about any part of our bodies and find some pd related agreement and discord like everyone is the same but we're all different. I felt that the toe curling I have started out as simply repetitive pressing down with my toes in order to better feel my feet and balance. Combine that with restless legs and all the other wierd neuropathic stuff that I've felt over the years and toe curling became compulsive. It was a way to feel my numbing feet. I have a pair of Redwing Shoes that are warrenteed for life I believe. I've thought of going on record as the first person to wear a hole in the soles of Redwing Shoes from the inside out! My right big toe came close! Now my toe curling is limited to dystonic problems normally when off.

As for toe treatment, I jumped up two shoe sizes and/or went to sandels to give my toes lots of room. Rubbing and restriction seem a quick route to deformity. It feels good and is good to pull back and straighten and strech curled toes. I prefer "noninvasive" treatments as I've found that most problems resolve themselves as a new problems arise. I've had severe dystonia move from place to place. Sholders, legs, forearems, butt, lower back, upper back, and my neck.

A toes life is bliss when sinemet is at its best.