Everyone seems to be talking about how th... - Cure Parkinson's
Everyone seems to be talking about how they walk, swim, etc. I can hardly walk without a walker. Does anyone else have that problem?
Yes I am the same,even stagger around in the home,and have to use a stick,my walking has gone really bad
I use to use a cane, but now I use a walker or a wheelchair. Thanks.
Me too.Diagnosed in 2007 and just five years I need a cane or walker to get around.
At least we can be thankful that we can get around at all. Thanks.
Happy Memorial Day! did the walking just get progressivly worse or happen quickly? I had a cyst drained on my spine ( not to do with Parkinsons)and just wondering if sinement helps your walking at all. What meds do you take .
I have a lot of problems walking as a result of dyskinesia's which causes sooo many problems with day to day life and it sucks!!!
t'm sorry about the dyskinesia. I've not on Sinimet. Do you think it was caused from taking Sinimet? I'm afraid to take it because of the side effects. You're right this whole disease sucks!
Don't forget that the side effects are only possibilities for some people. Sinemet or Madopar (both contain the active reagent Levodpa) has transformed lives. You may well never suffer any of the side effects. The worst thing is that after some years (maybe as few as 4 or as many as 12?) it looses its efficacy.The other common problem with long term use is dyskinesia. Some have hallucinations too but you may get a new lease of life for some years. Levodopa, first used in the 1960's is still the best PD drug there is.
hi i cannot sswim as i ca\nnot coordinate
walk wuth a 4 wheelwalker.
and need a good arm ot hang on to
fall over to much
lol jilll
diaagnoswed with Psp in 2010
:
He had periods of the day like you describe. Our solution was a Schwinn recumbent Exercycle that he can get on for as little as 5 or 10 minutes several times a day just to keep the circulation good in his legs. We have it in our bedroom and it is so heavy and stable it has become in itself one more grab bar to manipulate around the room with. There are times of some days he uses his walker to get to the cycle and he says after just a few minutes he feels less rigid. When he feels great, and has the full 30 minute workout he sleeps like a baby during his next nap.
yes , unfortunately i am the same and getting worse by the day it feels - i can only get from one place to nother with the help of my husband - i do have a walker bt it is so hard for me t use it - i feel very weak and like there are bags of cemment tied to my legs - what meds are you on mary alice
I have a lot of trouble getting about due to gait freezing where I try to move but only the top half is able to do so and the feet are as though glued to the floor. This leads to or potentially leads to falls.
However this is no longer a problem due to medication. I take Levodopa in the form of Madopar. The gait freeziing returns about 4 hours after taking a tablet.
I was just wondering what medication is being taken by all those who have so far responded to this question?
Dr. suggested I get a laser pointer so when my husband has the freezing episodes, I can shine the red light on the floor to re-direct his brain so he will start walking again. Only have tried it once so far but it seemed to help. Also think about marching in a band to get the legs to move. He is on Sinimet and Mirapex and has been for about 4 years but I think his body is starting to get use to the meds now..
There's a walker made for Parkinson's patients called the U-Step. It has a laser light on it that does help with freezing. I bought one and I really like it except it doesn't work that well on carpet. You can google it if you are interested. Thanks.
Thanks for the info. Didn't realize they made a special one for Parkinson's but will sure check into it.
I have problems walking indoors (but not outside) and have been given a "laser" cane to try by the Parkinsons Nurse - it's called an "InStep". It works , as long as i remember to use it !!
Thanks. I'm on Mirapex and Amanidine. I think a lot of people take Sinimet.
hello pete 1,
i am currently on sinnemet , stalivo and sifrol - was on modoapr but i think tht the sinnemet is making me worse
I can take modopar too as i was told too by my neuro - so i take a125m grm one at night i - it sems to help with my leg and neck pains and makes me sleep better
think i mya go back on modopar - but have only been on the other 3 for5/ 6 weeks sa need gti keep trying i guess ?
Hi Shasha,
Right, this is a bit confusing. It is often difficult to make something simpler by writing about it.
Sinemet and Madopar are effectively the same thing, that is, they both contain Levodopa and another component (Carbidopa in Sinemet and Benseraside in Madopar). The active reagent is Levodopa. The Benseraside and Carbidopa both do the same job of preventing the Levodopa being absorbed into other parts of the body rather than the brain. This is good because without either of these much bigger doses of Levodopa are required to get the same effect on the PD. One of the possible side effects of Levodopa is billiousnes. So anything enabling a reduced dose minimises this side effect.
If you take a 125mg tablet of Madopar that is 100mg of Levodopa and 25mg of Benseraside.
Stalevo is Sinemet with an added component called Entacapone.
Entacapone inhibits the natural brain chemical that is used to "metabolise" .dopamine once it has been used. Thus there is more dopamine "floating" about for re-uptake and re-use.
Without knowing very much about all this it still seems a bit strange that you are taking Sinemet and Stalevo, why not just Stalevo? Perhaps its just a way of getting the dose of each that your Dr wanted to administer.
I know of no benefit that Madopar has over Sinemet or vice versa. It seems to me to be almost inconceivable that Sinemet will make you worse and Madopar won't.
There was a world-wide shortage of Sinemet, probably still is. This I heard was due to the patent running out so the Drug company had less interest in its manufacture. Because of this shortage Madopar has often been prescribed in preference.
Sifrol is a different type of drug, it is a Dopamine agonist. Also known as Pramipexole, Mirapexin or Mirapex and a generic version called something or other ?. In small doses it is use to treat Restless Legs Syndrome (RLS). People may be aflicted by RLS whether or not they have PD. When Sifrol is used to treat PD larger doses are used.
I have heard on heatlthunlocked of Sifrol being administered in doses up to 24mg per day.
I've been taking what I was told was a maximum dose of 1.06mg Pramipexole 3 times per day.
Anyone taking something like 24mg may well be subjected to compulsive behaviours like gambling etc.
At 3.18mg per day I have not experienced this effect.
Regarding pains I quite often use Paracetomol. This common cheap drug seems to give me a better day - generally less stiff and uncomfortable, more relaxed.
I take Madopar and Pramipexole (Sirfol) and without the Sifrol the effect off the Madopar is less profound and I get RLS, Strangely my RLS is most noticeable in my left arm.
Hope all of that was of interest and not confusing.
Best wishes.
Pete
thank you so much pete for al the info - i only just found it by accident as i was looking for a message for me on here- did you c lick on reply to this or just on the general rply ?
Hello Shasha,
I clicked on the "Reply to this" button.
Regards.
Pete
thats ok pete i did get it a little later thanks - i was doing some research on line last night and cane up with a serious condition which affects the -ability to walk and other stuf like incontinance and constipation will let you know when i put this to my neuro !!
Interesting. Incontinence, and especially constipation are also PD symptoms,
Are they really symptoms of Parkinson or the meds?
I recommend the wikipedia page on PD. That page specifies most of the PD symptoms you may choose from. If I count my own signs and symptoms I get up to about 40 or more. Drugs do have some side effects but most problems are attributable to PD.
wikipedia link :-
en.wikipedia.org/wiki/Parki...
A very good explanation pete , thank you . also for mentioning that you appear to get so many symptons . So does my husband so must so I wondered if I might be becoming obsessed.
My husband is very very sensitive to medication ,oNce again I wondered if I wasn't given any new meds times for his body to get used to them . The side affects are so bad I have to stop them immediately .
They make him confused' uncoordinated, delirious hallucination and very Hyper with speech impossible to decipher .
The first t time it happened was when he took strong pain killer after a knee op . I didn't take too much notice , I have heard others say the say thing .
It next happened when he was given Digoxin for Atrial fibrillation then again when using mouth drops or patch behind the ear for drooling .
The nurse is recommending to his consultant that we now try Entacopone with the Sinemet he has always been taking albeit a low dose 110 x 4 daily . He seemed to worse when he . added the Rotigotine patch more dystonia jk
Mary Alice started this thread , I just wanted to point out Mary that no two people are the same so don't feel bad when someone says so and so keeps walking running cycling you have to keep going Ŵell you would do if you could .
Exercise is so important and gives you the feel good factor if you are able . My husband is chair /bed bound , is hoisted for everything including commode but on his better day I can see him doing what he calls his exercises in his chair raising his arms and legs and stretching them and sings which can cheer him up and helps his voice and swallow . He is doing the best he can the same as he always done .
Are they really symptoms of Parkinson or the meds?
Are they really symptoms of Parkinson or the meds?
Hi Pete , what a strange thing PD is !! I have been taking Requip (ropinerole) for 5yrs and currently take 22mg of Requip XL first thing in the morning - i've recently started taking 1x 62.5 Madopar dispersible tablet when i get out of bed - to give me a "boost" until the Requip kicks in. I was prescribed Sinemet but only lasted 4 weeks as it made my tremour worse !! and i felt , at times , nauseous even though i haven't had any other side effects - strange thing PD is !!
It is sometimes recommended that Levodopa should be taken with some food, even if its only a biscuit in order to minimise nausea.
PD is very strange but also quite interesting.
Sinimet, from what I was told, can not be taken with protein. You need to wait a min of a half to 45 min before taking it. The protein doesn't allow the sinimet to be absorbed
i take 1 azilect and 14 mg neupro patches. the only thing i cannot do is swimming because of the coordination
My husband has the same problem with his walking and uses a walker around the house but tries to use a cane when he goes out. He is on Sinimet, Mirapex and the other PD meds and has had PD since 2007. Disease seems to be progressing rapidly for him. Family dr. just prescribed a steroid to see if that would help his legs. Muscle strength is very good and dr. thinking he may have inflammation. He also suffers dementia which has given him a double whammy. No energy and tired all the time but dr. says that is caused by disease and meds. Seeing a therapeutic massage person twice a week and that seems to help him for a few days but just startedt so don't know how that will go long term.
Thanks. I'm sorry your husband is having so many problems. I hope things will improve,
I have been diagnosed since 2004, on sinemet since 2007 . After several injuries I have pain, dystonia and dyskinesia. I started using a walker after I found I could not walk more than 2 blocks without severe wearing off during a brief trial of Stalevo. After a walking training course, I am walking with the walker (4 wheel) a mile and a half. Getting muscle tone back. Around the house I don't need walker. But put on music and I can dance!
Thanks. It sounds like there's hope for me. Where did you find the walking training course?
My neuro started an exercise program at the JCC here in NYC. A walking group was organized with a trainer with the goal of walking in the Parkinson's Unity Walk April 28. We were given heart monitors. When the weather was bad, we walked on treadmills. This trainer had us going ! I realized I could walk even when my brain was telling me I couldn't. Yes, there's hope!
After reading these post I find that I feel much like you do. It is getting worse all the time...difficulty walking, feet turn under, shaking, tremors, pain in legs,
and more-- I try not to ask why; but, each day seems to be more difficult to
the point it is hard to do normal things like going out to dinner... ~~Dennis
I stagger around, my toes curl, long walks are out of the question. Maybe I should try a rolling walker? I use a cane. I work out with a trainer and try to maintain muscle strength.
I have my moments...I sometimes have to use a wheelchair...I prefer the walker though and though there are times when I can walk on my own I do get fearful of falling in public because I do shuffle my feet and tend to sway or appear to be falling forward. I try t make the best decision before I am going out what I need to handle the adventure....My children and granddaughter (bless her sweet heart) thinks I can "keep up" when we are walking as a group...t5hey mean well....
Thanks.. You sound like your're doing good.
Yes thanks for asking this question. I was diagnosed in 2008 with PD akinetic rigid syndrome. I took mirapex and stalevo but both caused an impulse control disorder. The stalevo was worse and was compounded by a sensory illusion of something beneath my skin. Now I take Sinemet exclusively. (25/100 2.5 ttabs 6x a day)
Like you, Dennis, PatV, and Raven's husband I have declined rather rapidly. I can barely walk without a walker. My challenge is keeping my spirits up. Maryalice, you've been very encouraging throughout this thread. What's your secret?
My faith that my God will take care of me.
thank you <3
Dam complex illnes isn't it .. My husband has only ever been on Sinemet plus and CR at night along with a neuro patch .. I recently noticed that he suddenly switches off and drools badly about an hour after taking his sinemet so have slowly reduced them .. , Instead have sarted giving him another Cr when he gets up . Now waiing for a telephone call from Consultant for his advice on it ..
He only walks from chair to chair and when I speak the the consultant he tells me he is doing fine haha ..He has no strength .. I know he is now 78 but not in his mind !!
I just read this post and would like to know about the neuro patch and what pharma company manufactures it. My husband's Neurologist did not know what I was talking about when I asked him about it. I know what you mean baout your husband not being 78 in his mind. My husband still loves to play bridge and has a young spirit but his body is just sliding away.
Thanks for your input. I don't take Sinemet, so I don't know much about it. If you don't get answers to your questions I'd find another doctor. That's what I'm doing. This web site told me about Movement Disorder Doctors who specialize in Parkinson's. If you google it ,maybe you can find one in your area. I'll be happy to help you if you'd like. It doesn't matter how old you get, you still feel young inside. Blessings.
maryalice, you have done well to manage for so long without Sinemet. I was diagnosed ten years ago,, had no medication for two or three years, then started Mirapexin which helped but after about two more years, things were getting difficult, in particular writing, but also walking. I started on Sinemet, which made a big difference. It has needed increasing over the years, and I began to develop dyskinesia. This was so slight that it didn't concern me or affect my activities, but it seemed to concern the consultant and nurse specialist.more. Eventually a friend mentioned it and I decided to go along with the doctor's suggestion of taking Amantadine. This has helped a lot. I can walk indoors without help, but I use a stick or a walker when I'm out. When I first started taking medication, I was very anxious about side effects, especially before Sinemet, but everyone is different, and there's only one way to find out if something helps or not. I wish you well, maryalice, and I hope you find a way to help yourself.
Thank you for the information. I've been considering going on Sinemet, but I am still concerned about the dyskinesia. What dose did you start with and what does are you on now? How long did you take it before you began to develop dyskinesia? I hope 'm not asking too many questions. Thanks.
Hi Maryalice, maybe you should start a new thread and ask that question about Sinemet and dyskinesias. I would like to hear other peoples responses to that. I am like you in that I have not taken Sinemet because I do not want to get started with the problematic dyskinesias. I'm aware that not everyone gets them, but how do you know? I only take Azilect and it has improved a lot of my symptoms. But I know that I would be more comfortable with another medication on board. I'm in a study and I am taking pioglitazone so I'm committed for another six months to not trying any other medications because of the study. When the study is over, I need to face that decision as to what else to try.
Thanks. I think I will ask that question. Look for it soon.
I'm ging to the doctor in a couple weeks. I think I may give it a try. Thanks, shasha, for the encouraging advice.
Thanks Shasha, I think I will.
i can walk without a walker...but i do fall alot...for no reason i just fall..my knees are all torn up although i do wear knee pads....seeems to happen more often now...keep u n my prayyers hang n there
Thanks for the encouragement. I'll include you in my payers too.
I have Early Onset PD. I am 48 and was diagnosed about 2 yrs ago, but now looking back, have probably had it much longer. I am in a nursing home and pretty much wheelchair bound. I can walk a little with a walker, but I have to have someone with me, as my legs freeze on me a lot. I can't live by myself, due to falling, and at this time, it's best that I stay here. It is a horrible feeling being my age and in a nursing home. I was so independant, and now I have to depend on others for so much. I am a resident volunteer and do the newsletter for the home, and I try to befriend those who are worse off than I, especially those who are bedridden. My faith is helping me, but there are days when I cry a lot, wishing I could do the things I used to do. Helping others helps me a lot. I know that I cannot change the fact that I have PD, although I sometimes try to convince myself that I dont have PD..I can dream, can't I? I pray we all live to find a cure. Blessings to all.
Cindylou,
My heart was touched by your post. I was diagnosed when I was around 46 also. I'm now 60 and have been battling this disease for almost 14 years.
If I didn't have my faith then I couldn't make it through a single day. I believe that there will be a cure in our lifetime, so hold on to that. There are days when I cry too. It's not out of self pity, but frustration. Some days I feel like I'm just existing not living. You sound like you are helping people in the nursing home, which means you are making a difference in other peoples lives for the good. That's more then a lot of healthy people are doing.
" Hope is the anchor of our soul." Please don't loose hope. Just take one day at a time and you'll get through it. Please feel free to send me a message through this site any time you need to talk or vent. There's a lot of good people on this site also who understand what your going through. Your not alone. I'll be praying for you. Blessings.
maryalice
Yes, I have that problem, although for about 2 hrs a day, I can walk ok. Sometimes. If I don't eat protein.
Maryalice, yes, I do. My "on" time is not very long. I seem to walk best about an hour after I wake up......after taking a generic long lasting sinemet. This lasts 3 hrs if i'm lucky. Then the rest of the day gets worse. When I am "off" , even the walker doesn't help. Most of the time if I stay away from protein, I can walk better.
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