Bad Day at Black Rock

The title of that old Western seems fitting. I felt OK yesterday. Today I feel like everything is shaking, inside and out. If I didn't have to walk the dog I'd sleep all day. It's just exhausting and I'm so sore! The doc doubled my dose of Cymbalta, and after a month of that, I will start on C/LD, which I was trying to avoid. I've been admiring and envying those of you who exercise so vigorously you don''t seem to need the meds. I had hoped to follow suit. Waaah! Well, I'll probably wonder why I didn't do it a long time ago.

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  • Sorry you are not well. This seems a bad time for PWPs. I always say that Exercise is one of the main things that seem to help fight Parkinsons. I really should Practice what I preach!! I had this great exercise routine worked out, but Parkinsons thought differently and I am always so tired that I just do as much as I can. But I honestly believe that a little is better than nothing. I have done chair exercises some days. I am hoping to get back to where I was, but who can tell. No two days are the same. Walking the dog is good exercise. I walk our two every day, even if that is all I do.

    Hope you feel better soon.

  • Aw, thank you. Tomorrow I've got to get on the stick.

  • Beckey, for some reason this is the first time I've read this post. Are you feeling better? And, did you start taking C/L? If yes, are you feeling better? It should help. I hate taking meds too, but sometimes you just have to give in. Hope it's helping.

  • Sorry to hear this. I am useless at excersise hated sport at school, hate the gym. I have always been so bad at it. Possibly because of PD, who knows. However I swim now and I really enjoy it. The freedom it affords my body and therapeutic stretching I really do recommend it.

    Yours

    C

  • No, I've never been big on athletics myself. I have to investigate the community pools. Swimming really calms a person in addition to providing low-impact exercise. Thanks for the reminder!

  • It would be impossible for me to go alone I am so lucky to have someone to take me 🐠🐠🐠🐠

  • Beckey, maybe having some small hand weights near your bed or favorite chair would help. There are really simple stretching and muscle tightening exercises that can be done while sitting or lying down, too.

    And swimming really is good exercise. Easy on the joints, too.

  • The trick is to find an activity you like that also happens to be exercise. Bears like to climb around on rocks, but that is just me.

    Also, if you need C/LD, you need it and that is all there is to it. It has been great for me - living a normal life because of it.

  • Hearing that is a real upper! I filled my prescription yesterday. I'm not supposed to start til the 25th but I emailed my doc to ask if I can start sooner. She wanted a full month to pass from the time she doubled my dose of cymbalta.

  • Sounds like a tough time for you, I hope it gets better. Have you ever looked at the website fight-parkinsons.org? It's a straightforward, not for profit explanation of the work one man diagnosed with Parkinson's did in reviewing absolutely masses of research on diet and supplements and, by changing his diet as detailed, he fixed his parkinsons. My partner was diagnosed over 2 years ago, takes just an agonist and his stiffness, sense of smell etc has improved since taking vitamin D3 (4000iu per day) and high DHA/ EPA omega3 oil since about November. He also takes l-lysine. It's really worth reading up on vitamin D and omega 3 as a starting point, as they are crucial for brain health and yet, in our experience, English neurologists seem to know nothing about diet and the impact of deficiencies. The creator of the fight-parkinsons website has done all the groundwork for us and he lists the research so you can go back to original sources if you wish. Best of luck to you.

  • Wow, that sounds terrific. Thank you! You made my day, which was otherwise sub-standard as you can tell. :-)

  • Sounds like you are doing too much exercise. Dont be afraid of the meds. Try Mucuna Pruriens first. Its herbal. We have PD nurses in the UK and they know more than the doctors.

  • My partner's PD nurse is a drugs pusher who reads no research but I hope they aren't all like that. After she urged him to take selegiline in addition to his agonist, we looked it up and he declined to take it. He improved without it and the neurologist subsequently said 'I would not have prescribed you that at this time'. We question whether nurses should be allowed to prescribe, on the basis of this experience.

  • My husband has taken it for 22 years and wont be without it. He never gets depressed and his PD has not progressed anything like as badly as we thought. He was prescribed it Professor Lees in London, an eminent neurologist. On the other hand, ten years ago he had to come off the dopa-agonist. I cost us £110,000 in compulsive behaviour, disastrous for us. There were no warnings in the packets then. Think you may have been misfortunate with your PD nurse.

  • Every drug has its pros and cons I guess Hil101 and opinions differ. For instance Selegiline (eldypril) is the drug John Pepper advocates as best treatment and asks why it is not used.

  • It is a very individual thing...gave my husband terrible hallucinations and it took 6 mos to get out of his system.

  • So Hil and others, which prompts the compulsive behavior? The selegiline? It's all really daunting.

  • Well, it is a lottery as you illustrate and best practice would be if they explained all the pros and cons of each option in advance and gave the patient more say - and checked for major dietary deficiencies too, while encouraging exercise. I think he was unfortunate with the PD nurse. Good job that they do explain about compulsive behaviour with agonists now. My partner's neurologist was astonished that he had improved when he saw her last month, just a year after she went to great lengths to explain that he could only go downhill. What a nocebo that was.

  • It does but just watch the dopa-agonist as she takes higher dosage. Google it. Compulsive behaviour eg gambling, hyper sexuality, compulsive eating to name but a few. They dont affect everyone the same way but it is very destructive if they do. Pergolide was the one my husband took.

  • Thanks for the warning. He's been on same 12mg dose for 2 years now and maybe thinking of reducing as he's improving due to supplements and exercise.

  • Jeannie, how do you know how much to take?

  • -Becky, sorry to hear about your bad day. But it's just a day and tomorrow you'll be much better exercising. Thank goodness for that wonderful little dog or is he big either way be grateful.

  • Ha ha, he seems small to me but he's bigger than a chihuahua. You're right, he's a blessing. Some days if it weren't for Bobby, I'd probably never get out of the closet, ha!

  • My take on the subject is that you need to be taking enough meds.and/or alternatives to allow you to get the known benefits of forced pace exercises - Nordic walking, cycling etc. and things like yoga and tai chi which help with balance. Think of it as rehab. Once you are fitter the symptoms are kept at bay and even, some believe, the underlying disease progress slowed down. You might in theory then be able cut down on the amount of drugs you take for the PD although I have not found that. Apathy is a known symptom and the PD meds should help with that to fix your get up and go problem

  • Thanks!

  • Hi Becky

    Hope you feel better soon and your body adjusts to the big increase Quickly. I don't think you should be too scared of carb/leva although it is far from perfect there are many on here who find it gives them their life back.

    As to people who exercise so vigorously they don't need meds that may be the impression you have but I don't think you will find anybody like that here. If there are I hope they will correct me. People have found they can reduce their meds through exercise but I don't know anyone on no meds, at least after the first two years.

    Hope tomorrow the day is better.

  • Hi Beckey. Hope you are feeling better. I identify a little - I have just reluctantly started taking medication in the last two weeks. My jury is out - I'm not sure yet of any benefit. Early days. I have good and bad days too - I do exercise but the time for some extra help has arrived. Today is a good day, yesterday not so much. My best to you. I always enjoy your posts, they are very helpful. The sharing of experience is the best thing about this site.

  • That is so true and right back at you!

  • Hi stevie3. I just saw this post tonight. How are you feeling on C/L? Like I told Beckey, I think the good will outweigh the bad.

  • Hi laglag, that's nice of you to ask. I'm taking ropinirole, which I understand is not C/L but an agonist - see my post tonight to Jeeves. The short answer is - I don't know yet! Oddly, I'm answering you at 3.30am as I can't sleep. This is my fifth week of tirating up and from next week, I switch to a slow release 4mg dose. My neuro wanted me to go up to 8mg but I've negotiated sticking at 4mg for a while to see how that goes. I've certainly not yet had the averse affects I'd dreaded - running amok with the credit card in Vegas - but the tremor is worse (more of a twitch). But paradoxically, I'm steadier. my driving is better, I'm walking faster, my mind is a bit sharper. Something had to give - I work and it's not really an option to stop. I'm optimistic. Still using a bit of Zandopa and still taking emergen C on your advice, which is fantastic for the stiffness. Thanks for asking.

    Sue

  • Sounds like it's working in a good way so far. That is definitely a good thing. I'm happy the Emergen C has been working for you also. Maybe others will try it & get some relief. If you don't mind me asking, where do you live? It's 1:45 in Indiana.

  • I live in the UK, in Surrey just outside of London

  • I guess I don't have anything really helpful to add as I have never really enjoyed exercise either. Maybe those of us who didn't were destined to get PD. I did enjoy figure skating in the winter and swimming for fun in summers. I had no favorite sports later in adult life. But now in trying to delay the symptoms I am truly enjoying my Pedal for PD classes and my walks with my husband around a track (our neighborhood is too hilly). I am only able to ride my indoor cycle still for 30 minutes on the days I am not in PD pedaling class. But we all must try to talk ourselves into moving as much as we can. If we exercise we may be able to drive our cars longer!

  • Beckey, the clever title of your post is eye-catching to those of us who like classic movies. So many great movies were made in the 1950s and before. A form of escapism, if only for an hour or two at a time. 😊

  • I careen back and forth between Bad Day at Black Rock and Shootout at the OK Corral, ha!

  • All the best Beckey. Stay positive .

    Regards

    D.

  • Sorry to hear you're struggling Becky, I wish you all the best.

    Out of curiosity can you tell us when you were diagnosed and therefore how long it's been before you've felt you have to start on the meds?

    I was dx in December but have had symptoms for a year and I'm interested in how long people have been able to go without the dop..

    Marc

  • Hi Marco. I got this tremor a little over four years ago. I had a bad reaction to sinemet, so the docs concluded I did not have PD. But the neuro I see now, a movement disorders specialist at UCSF, has no doubt it is PD and thinks the dose they started me on back then was simply too high. It's only been since November that she's been firm on the Dx. I've had two DaTscans and have acquired some other PD symptoms, like difficulty turning when I'm walking and falling. Thanks for asking. :-)

  • All you need is a little weed calms tremors,increases appetite,relieves pain,doesnt do much for FOG , has none of the negative side effects like sinemet and gives you a better way to cope with the disease. i get it from a dispensary with a menu for weed oils and candy all laced with THC this has controlled my symptoms far better and without the nasty side effects of the other so called meds for years now. best of luck in your journey for relief .

  • Thanks, Pappy! Unfortunately I get too high too easily and find that horribly uncomfortable. I can never remember which is indica and which is sativa...?

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