Dystonia

[maryalice]

I have dystonia I in my right foot so bad that It prohibits me from walking. My foot is turned inward and when I stand i am standing on the side of my foot. Any suggestions? Thanks.

[Beckey]

Ack! I know EXACTLY what you mean! Sometimes I feel like Frankenstein blundering along, and I can only guess what I look like, ha. I went to my dr last week for an "on-off" test. She said I get that dystonia when the sinemet is wearing off, and to take my next dose sooner (originally, she said to take it every five hours; now it's every 3 1/2). She also said I might be taking too high a dose and to go back down to one. Then she prescribed amantadine.

So far, it hasn't taken effect, but it's only been a few days. She said if it doesn't work, I can switch from Sinemet to Rytary. There are some drugs that scare the bejezis out of me, the ones that trigger compulsive behavior -- like the schoolteacher who started gambling out of the blue and ended up losing her house (ack). I don't know if Rytary is one of them... I say I'd do anything to squelch the dystonia but I'd draw the line at that!

[park_bear in reply to Beckey]

Rytary - no worries - it's just C/L extended release. Do try this or Sinemet CR which is similar.

[maryalice in reply to park_bear]

Thanks.

[rebtar in reply to Beckey]

Have you considered Botox? My neuro (movement disorders specialist) suggested that it works well for some people, although not a pleasant procedure. He did say it's important that it be done by someone experienced with Botox for dystonia. But perhaps you will find a solution with the meds dosing and timing before going that route. He also said that most people don't have the horrible side effects that we read about from the agonists (that can trigger compulsive behaviors). Rytary isn't an agonist, though. Good luck, and I'd love to hear what works for you cuz I also have dystonia in my left foot, although at this point it's only when I exercise and it's manageable.

[maryalice in reply to Beckey]

Thanks for your help.

[maryalice in reply to Beckey]

Thanks,

[Motherfather]

sorry maryalice well theres one thing that helps me and thats a small massage machine that comes with slippers that massage your feet there like electronic that plugs into the slipper and they should make a bit of differents they are like flip flops im wearing them as i write to you..very cheap you just go into the internet and buy them they come with pads as well for different parts of the body.cheap as chips to buy..20 to 30dollars from china.hope this helps you ill try and send you a clip from u tube.im 70 and still exercising every day..hahaha im 70 and have abs.anyway mary ill try and find what you need .regards john your pd friend.

[Motherfather]

youtu.be/jpXJba_a8PA(Not working as expected?)

[maryalice in reply to Motherfather]

Thanks. I will let give them a try

[Dap1948]

I travel from uk to Toronto tomorrow to have four daily sessions with an expert on treating dystonia through movement. See fariastechnique.com youtu.be/czW-xBvDtHY(Not working as expected?)

[mblongdon in reply to Dap1948]

Would love to hear how this goes for you. Very interesting.

[maryalice in reply to Dap1948]

This looks very interesting . Please tell us about it when you get back. Thanks.

[Lisl]

I was greatly helped by DBS. Both my feet used to turn over preventing me from walking (as well as being agonising). My arms were also affected. As in my case, dystonia can be a symptom as well as a drug response (especially, I think in some younger onset cases). My problem was that when I took sufficient dopamine to control the dystonia, it caused dyskinesias.

[maryalice in reply to Lisl]

Thanks.

[Doodeet]

Try some therapeutic massage. It can be painful but might fix the problem....

[maryalice in reply to Doodeet]

Great idea. Thanks.

[Maxkas]

I suffer paralysing dystonia in my left foot left calf & left groin

I'm unable to walk as feels like walking on razor blades

I was diagnosed 8 yrs ago with PD & was coping marvellously with Stalevo until my daughter's estranged husband created unbelievable stress in all our lives now my specialist has changed my Meds

to sinemet slow release at nite

Azilect in the morning

madapor rapid in the morning

a Stalevo in the morning.

& then another 4 x Stalevo a day (2.5 hourly)

The dystonia in my left foot is acute agonising pain with hardly any relief from it all day & most nites

Any suggestions r extremely welcome

I have rung my neurologist rooms, had my husband drop off a letter requesting a telephone conversation. To be told that no one else had ever complained

I'm at my wits end

My previous exercise prog

Stationery bike & boxing have been unable to be undertaken due to the constant dystonia pain

Kas

[park_bear in reply to Maxkas]

Stress will aggravate any illness. It is important to reduce your exposure to stressful situations as much as possible. To the extent you are unavoidably exposed, it is important to do whatever is necessary to deal with the situation, which may include counseling and mediation for various parties, or police and restraining orders if need be.

When you have done all you can do, relax in the knowledge you have done what you can and surrender to whatever the outcome may be. A meditation practice can be helpful.

[maryalice in reply to park_bear]

Good advice. Thanks.

[maryalice in reply to Maxkas]

I know exactly what you mean. I'm going to try the slippers. I'll let you know if they help. Thanks.

[Hikoi in reply to Maxkas]

Maxkas

Are you still getting bad dystonia? There are various types. It looks like an increase in meds is to blame. I think you could be slightly overmedicated. It can be just one extra pill or one less that can make a huge difference. You would need to track your timing of meds and dystonia to see.

[tid1]

Hi - I have the same problem with my left foot turning outward. I could hardly walk around the house without significant pain and doing shopping was very slow and painful. The muscle cramps in my foot were getting worse because I wasn't exercising much because it was too painful. I found that walking around the house in slipper socks (with rubber dots on the bottom) was easier than wearing shoes because my weight helps keep my foot from turning out as easily when I walk. Then in desperation I tried walking on the treadmill in slipper socks. I can't believe how much it is helping - way more than muscle relaxants. I am now doing a mile on the treadmill every day in slipper socks at a fairly quick pace (3.2 - 3.5) because I need to take the next step before my foot cramps back up. I think it helps loosen the muscles. This has been a miracle for me and I hope it helps you.

[Bridielena]

Maryalice I know your difficulty and I suffered each morning after getting out of bed. Within 5 mins it hit sometimes both feet but usually only the left. I just had to sit down immediately or I would fall. I'm a shuffler too as I am not medicated during the night. The toilet seat, edge of the bath, coffee table, if I made it to the TV room looking longingly at my recliner chair a metre away but it may as well have been a kilometre away as impossible to reach . I could sit for 20 mins before the foot straitened. That's the only time I'm affected, so far anyway. I rarely sleep beyond 3.30 am and struggle on my own so the rest of the family isn't compromised . So far too, no falls.

Now....after 5 visits to a wonderful Physiotherapist and her knowledge I sleep with a pillow under both knees.....just a little bend in the legs and while it's not the way I have slept ( on my side) all these years, I do sleep and I have not had Dystonia.

I'm on MADOPAR and SIFROL ER . Do have Dyskinesia though half way through my on time which abates when next dose is due. It's awful and most likely from the MADOPAR.

Diagnosed in 2005 but only a problem the last 3. I'm eager for Living Cell Technology to finally be given the go ahead to release their procedure to the public, 2018 , as I have been informed by one of the CEO's. New Zealand/Australia company. It's very expensive I believe, but as I have private health , I should be covered. I live in Australia. Not covered for procedure out of the country. It will be available to paying patients in New Zealand before then. Mind you, it has to be approved and that should be later this year and until it is I can only 'hope' and believe in it.

Try the Pillow method, simple but effective.

I don't exercise anymore but I don't stop either so must be getting enough that way..

Hope I haven't rambled too much .

Bridielena

[hanifab23 in reply to Bridielena]

Bridielena

Please tell me more abou the cell therapy what is the advantage and pillows can you describe exactly

[maryalice in reply to hanifab23]

You may want to message Bridielena because your question came to my email.

Maryalice

[Bridielena in reply to hanifab23]

Sadly the Cell Therapy failed its final trial. I was devastated. The group is still active I believe. Look for yourself .....Living Cell Technology.

I place a small pillow between my legs and go to sleep. Why it works I don’t know but it certainly has proven itself to me.

[maryalice]

Thanks for your help..

[Astra7]

Have you tried magnesium and Epsom salts foot baths? Might bring some relief.

[maryalice]

Thanks. I take magnesium. Do you mean to use it to soak your feet inn too?

[sandmarg]

@ maryalice did u find something to relieve ur cramping?

[maryalice]

A friend of mine told me she used castor oil when she experienced pain from an old neck injury. I was skeptical at first, but it really did alleviate the pain. I just rub it on my neck and feet and in about 15 minutes most of the pain is gone. If you Google castor oil ,!there are some articles about it. I buy mine from Amazon. I buy the organic cold pressed,solvent free castor oil from a company called Home Health. It cost about $10.00 for a large bottle.

I hope this helps.

[Bridielena]

I only have trouble about 5/10 minutes after getting out of bed. A Phisiotherapist told me to put a pillow between my knees when I went to bed....it worked......

[maryalice in reply to Bridielena]

Thanks. I'll try it.

[Bridielena in reply to Bridielena]

Oh I cringe when I read my reply’s and find TYPOS . IE Physiotherapist..

[Bridielena]

Good for you. Hope it surprises you as it did for me.

[maryalice]

DON'Y WORRY ABOUT TYPOS. I'M GRATEFUL FOR YOUR HELP.