Living with diagnosis of PD

Living with diagnosis of PD

I was diagnosed 2005 and have been on Madopar 125 since.   Have added Siftol ER to the mix.

Parky had been controlled and nobody ever noticed a problem until about 12 months ago.

After about 30 mins of taking the drug, my left arm jerks for about an hour. ( maybe that's why I have lost weight in the past few months).  It settles down until next dose of which has been 2 X 3/4 hours.   I have been known to have to take 10 during the day's progress.   Dropped it back to 8 and now on 6.   My body particularly when a dose is required becomes very weak....can't feel the sheets to fold......usual household chores become impossible.

Getting out of bed is excruciating when I wake about 4.00 am after a reasonable good sleep.    My left side is the affected one.....at my age 69 Osteo has set in too which adds to the problem.   Once up, standing still for a minute or so, I manage to get to the bathroom, swaying but hanging onto walls etc before finding my way out to the kitchen to  make a coffee.   Haven't spilt one yet or fallen as I am very aware of the consequences of that.  I do have a walking frame and walking stick but since starting on a Probiotic just over a month ago haven't needed to use them.   Determined not to actually.......and that is the reason also for dropping the dosage to 6 a day.    

Around 6-6.30 start Madopar which kicks in rather quickly still.

Sometimes, even, upon getting out of bed and hitting my stride....large steps.....try not to shuffle, I feel I don't need the Madopar but I never NOT take it.....for a while feel worse after swallowing it but it always takes up.

I had heard of someone curing his Parkinsons Disease by taking a PROBIOTIC so nothing ventured nothing  gained I thought.

I know there is improvement and after researching Parkinsons and Probiotics found a lot of  information relating to Gut health and the Brain.

Maybe it's the Placebo effect.     I am optimistic though.

Bridielena

25 Replies

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  • HI Bridielena 

    May i suggest adding  a extended release med at bed time that would help when you wake. I take extended release carbidopa levodopa 50/200 at bed time and 

    1 6 mg Requip 24 hour at 6 pm this helps with off times because it works for a full 24 hours. 

    I wake with no problems because  i am all ready medicated.

    Good luck.

  • Thank you so much Bailey.  Will take your suggestions to my Neurologist when I catch up with him.

    Bridielena 

  • Well you're lucky to have such a great neurologist. I now have disperable madopar 125mg 5 times a day, plus normal capsules, also the 6mg patches. The controlled release was discontinued recently. 

    Do you suffer with any kind of dysinkinea?

  • Yes within 15 minutes or so after Madopar.   My left side is affected only and the arm jerks continually particularly when I rest it.

    Lasts about an hour.

    I was experiencing right leg stiffness and numbness and feet curling  under first thing in the morning.   Couldn't walk but again it disappeared after 10/15 minutes.   Extremely distressing but since the Probiotic haven't had any more.

    I find it difficult to believe though that the Probiotic is making all the difference....just too simple to be true......however!!!!

    Bridielena

  • Hi Bridielena

    Can you tell us what the probiotic is and how much you tske? Many thanks 

  • I  agree with this a advice. I too wake up about 4 a.m. with the same agonies of pain, difficulty moving, needing to get to the bathroom etc. I am virtually on 1350 mg daily of Sinemet and it I have built up to this over 8 years. Besides the night problems I experience long periods of off time during the day. If I was prescribed the Requip slow release or Neupro I believe I would not have such dreadful difficulties but my Neuro won't prescribe any DA.

  • Why not  prescribe DA. 

    I just ask and my Neuro and he ask why and says okay lets go for it. He works for you you pay the bill. If you don't have any under lying problems he should at least let you try it. If not find another Neuro.

    I would get in his face. It is your body he has no right to blow you off. It is a  guessing game of trail and error.

    My Neuro has a web site that i can write him a note and he responds the same day. 

    Good luck and take control of your PD fight like hell and never give up.

  • I was very nervous about the patches because of obsessional mother and addictive personality father so I don't underestimate the risk.  Slowly worked up to  8mg patches with four sinemet plus  and so far no ocd.behavour .  One in five develop ocd behaviours which means that 4 out of five do not. Do you perhaps have a history of addiction?  Otherwise I think your neuro's flat refusal is not logical

    For people who live alone some sort of 24 hour med.is a godsend.  I daresay  your neuro has a little woman at home to deal with the realities of everyday living.

  • That's awful. Is there a reason why your neuro won't prescribe DAs? My neuro uses a balance of madopar and DAs anf achieves excellent results . I see you're in the UK. You can always ask to change your neurologist. You can research on line and ask your gp to give you a referral letter. Whereabouts are you in the UK? 

  • Thankyoj for your post. My Neuro has picked up on an issue I had with Cabaser in 2005-7. My Neuro had prescribed the drug at 4mg daily from the year  but had retired so I was virtually unsupervised. It's a long story but my Neuro will not be moved even though there are safer DA about now and there is close scrutiny of my pd from family, doctors  and nurses.

  • Hi batwing 

    I too had a very bad time with DAs the first time they were prescribed about 10 years ago. My new neurologist explained to me how they had not been balanced properly with the other medication. A couple of years ago he added a 2mg neupro patch and this is now up to 6mg with  only benefits to show. Given my extreme reaction the first time I think it shows how important it is to see someone who really undestsnds the interactions . Could you ask for a second opinion? Large teaching hospitals in my experience have mich more upto date knowledge than local ones. At the teaching hospital clinic I attend you never see any one with dyskenesis and my consultant says it's 30 years since they were a problem yet at the local hospital I used to attend 20 miles away the waiting room was full of people with severe dyskenesias. It's all about getting the medication right. 

  • Bridielena, 

    What Probiotic do you take?  I've also heard the possibility Probiotics may help, there are so many different strands available.  And, if it's the Placebo effect,  who cares as long as you feel better!

  • 69 -- Jiminy Christmas. You've got to be kidding!

    I started taking probiotics yesterday. Here's hoping.

  • Keep in touch Becky

    Bridielena

  • Have a look at fight parkinsons on facebook

  • Will attempt to Marieboyd.....I dont like Facebook though.

    Bridielena

  • Hello LagLag

    It's just one from my local Pharmacy.    I live in Queensland Australia.

    Its called   Pharmacy  Health Probiotic Fridge Free.

    I have heard you should buy one which is kept refrigerated though.  I will do that when next I buy.

    Thank you for your interest. 

    Bridielena

  • Hi, Bridielena.  I have been diagnosed for a year since February and am still taking my original prescription which is Sinemet generic 25/100.  I never had any nausea or any problems at all with it.  My slight left hand tremor and tiny handwriting disappeared right away.  I have been taking Allign (brand name in USA) for over 10 years maybe since taking after a CT scan when I had to drink something that could upset your digestive system.  I took the Allign to make sure that didn't happen.  And I just always have taken it since everyday.  Maybe that has helped with the PD too.  I don't think it would hurt anyone who would want to add it to their meds, but I am not a doctor. But then all of us seem to be doctoring ourselves anyway it seems.  Maybe one of us will someday find a cure.  (The Malopar you take is I think the European version of Sinemet.)

  • Bridielena again.

    Align here in Australia is a Probiotic which is what I take every day too.

  • Hello

    It's just turned 3.00am here in Qld and I should be in bed  but pain again has  got me out and into my reclining chair.     I had a full knee replacement 4.months ago which is the reason for the pain.   My doctor said because of Parkinsons my recovery will be longer and more painful than others without PD.    18 months before I will be 'normal'.    I will find out about Allign.   I send any information about PD to my Neurologist.  He has said his patients often find out what's going on before he does.

    I am falling asleep which I can do once I recline and the knee supported.......that is after I have researched Allign.

    Bridielena

  • Recliners are great for sleeping in.

    For the osteoporosis vitamin K, both K1 and K2, are essential for getting calcium *out* of the blood and *into* your bones.  Also essential for bone health are vitamin D, silicon and boron. Without the vitamin K the calcium deposits in your arteries instead and you get hardening of the arteries as well as osteo.  These supplements will also promote bone healing around the new knee implant.

  • Thank you Park_Bear

    Never too old to learn.

    Pity my husband didn't know about Vit.K1 and 2 as he has large Calcium buildup in his Aorta.   One Stented operation has failed now facing another complicated procedure which may also fail.

    I will seek out the Vitamins concerned anyway as I don't want his problem on top of mine.

    Onwards and upwards

    Bridielena

  • I suffer from ADDISON since 1997

  • I am 75 retired 4 years ago in Perth after 32 years in greater London suburb of Stanmore. I suffer from ADDISION since 97 and PD since 2009 and I was prescribed 

    8mg REQUIP XL Ropinorole and 1mg of Azilect Rasagiline one a day each and that controlled my PD until 2012 but when I arrived in Perth Madopar 125/25 twice a day and that has helped me control PD better. Lately I find that the muscles in leg are not helping me to get up from chair or come out of the car as quick as I was able to last year. This could be due to PD or Addison. Australia is v good for PD.

    PERHAPS you may feel better with my prescribed medicine you refer to your neuro 

    J R

  • Hello Kade

    Sometimes lately I don't know what is wrong with me .......something......for instance the last 2 mornings upon getting up and finding my balance albeit a little wobbly, I have found that my Gait is almost normal.....I stride out without any aids ie walking stick. I can make a cup tea and carry it back to my chair usually with this IPad under the arm as well.

    I wait until 6 or 6.30 to start on Madopar approx. 1 to 2 hours after getting up . That varies between 4 am and 5 am usually.

    The last 3 mornings though I have had nausea to contend with. It eventually settles down.

    I would love to kick the Meds and see how I fared but know that would be absolutely catastrophic so won't attempt it. I will however, get in touch with my PD nurse today and talk it over. I don't see my Neurologist until July.

    Thank you for your interest

    Bridielena

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