Forum Replies Created

  • claudio

    Member
    February 17, 2022 at 12:07 pm in reply to: How do you store your medication?

    I take 8 different meds daily (most of them PD related). This means that for me, managing all the meds is a critical task. I have always kept apart L/C meds from the others, because I take L/C several times during the day and I need to have it with me wherever I go. So every day I fill a small plastic cylinder container with 6 pills of L/C. Apart from that, I have a 2-3 pills L/C blister in the car, the same in my bike, in my key holder and in my wallet. For the other meds, until 2-3 months ago I stored them in a 7 day/compartments small container, (I easily remember when and which I had to take each med), sure that this method couldn’t last forever. In fact, when 2 apparently identical pills, that I had to take in different hours of the day, appeared in my life, I switched to a completely different system.
    I bought 3 small containers (3,7×2,4×1 inch), each with 10 properly sealed different size compartments in order to store large and small pills without wasting space. I labelled the cover of the inside compartments with the med name and hour of assuming it during the day. In this way anyone has the container immediately knows my weekly regime (apart from L/C). Then I accomodate the weekly needs of meds according to their label in the proper compartments. At the end, I still have 2 compartments empty…ready to welcome (?) 2 new pills! With several properly labelled weekly containers, I refill them every 2-3 weeks and the managing of meds is over…not the PD! May be now it’s clear why for me managing meds is a critical task, duly accomplished! So far!

  • claudio

    Member
    November 21, 2019 at 1:03 pm in reply to: Is Dyskinesia one of your symptoms?

    If your dyskenisia (I assume you are sure that is dyskenisia and not tremor… because obviously the latter is a symptom!) is due to generic drug, you can’t test your theory, you say, but if it’s due to overdosage (in some way related to the generic drug bioavailability, not to a real change of doses) with a bit of luck, and a selective strategy, you can find it out.
    If I were you, I would identify the most annoying dyskenisia event during the day. Then, the following day, I would replicate exactly physical activity and meals, but I would half the levodopa drug pill that preceded the event the previous day (I wouldn’t change anything else of your drug bouquet). Then, if with half the pill you don’t have dyskn, but you got symptoms, the following day I would take 3/4 of the pill, rest unchanged. As I said, with a bit of luck, you should find the proper dosage, the proper trade off between improving symptoms and keep dyskn away.
    To be better aware of what I said, you can have a look to this webinar of APDA especially between 6′ and 10′.
    Not enough? for a deep full insight on dyskenisia in PD, have a look to this “dedicated” webinar always from APDA.

    Hope you can  get rid of dyskenisia, pls let me have a follow up!

  • claudio

    Member
    September 14, 2019 at 10:28 am in reply to: Is Dyskinesia one of your symptoms?

    As far as I know, dyskinesia is a side effect of over dosage of levodopa, not a symptom of PD, but I would welcome a more competent answer!

  • claudio

    Member
    August 10, 2019 at 5:15 am in reply to: Swimming + Parkinson's disease

    I enjoy swimming. Unfortunately since I got the PD, I can’t swim as I did before (until my age of 59 I used to swim 40 50 mts laps, no stop, mostly crawl). Now, almost 65, diagn. 4 1/2 yrs ago, even when covered from L/C, I can’t swim more than 10 15 mts laps no stop.
    What is your swimming routine? Do you know of anyone with PD that can  swim even if  he’s OFF? Have you got any tricks to regain good rythm if s.o. got PD?

  • claudio

    Member
    May 30, 2019 at 12:39 pm in reply to: Why did you join this forum?

    I joined this forum, because I think that sharing experiences about PD may be helpful in coping with the disease. PD, the poor release of dopamine, is a matter of brain. I wouldn’t be surprised if, sharing experiences, habits, info, tricks, one day someone finds out a way – an exercise, a trick, a behaviour – to make brain release dopamine apart from the substantia nigra. I experience sometime a lack of symptoms even without drugs and in that case I question myself on the cause of that welcome event… I then track what I did in the past hours: exercise? manual tasks? brain tasks? listening to the music? dancing? sex? restful sleep? any not routinary task? I still haven’t find the correct link… I’m still chasing it and I hope to find an answer may be reading a post right here in this forum! Thanks you all for being here!

  • claudio

    Member
    March 24, 2019 at 11:17 am in reply to: Is your PD progressing quickly or slowly?

    May be I’m wrong, but I think it’s not so difficult to assess the progression of Parkinson. If you really want to know it, there is the UPDRS scale (Unified Parkinson Disease Rating Scale), that you can do at intervals of time and you can almost complete on your own. Apart from that, you can invent some “proxies” to have some answers . I (diagnosed in 2015), a few months later, handwrote 20 lines  and kept them. From then, every year I repeat this silly exercise (obviously you can get worse in other symptoms and not in handwriting, or the opposite!) and compare my writings. Almost every day I make balance exercise, standing on one leg, may be just to wear trousers… So far is fine… so far… but I think will come one day that I won’t be able to do that! Anyway the best meter I think is the UPDRS questionnaire.

  • claudio

    Member
    March 21, 2019 at 4:44 pm in reply to: How do you feel today?

    Symptoms fluctuation is an “intriguing” issue for me. Because, I think, the more I understand how symptoms fluctuation works, the better can be my quality of life.
    I see 2 different types of fluctuations: the “unexpected ” and the predictable. Than I split the former in
    >Negative fluctuations, possibly due to some delays (food conflicts? emotional stress?) in the difficult journey of meds to the brain or due to other chemical process (disturbed sleep) in the brain.
    >Positive fluctuations: a few hours after a serious workout I may feel off of symptoms even if I’m not covered by levodopa. The same I may experience if I attend an unusual manual (diy job) or mental (working with Excel) task.

    When we come to the predictable fluctuations, due to the effectiveness curve of drugs, I set a spreadsheet (that generates a graph) by which I process the half life, on me, of every single dosage of ldopa I assume. In such a way, I try to optimize the time of assumption of drugs (with doc I negotiated a discretionary power by which I can decide on my own within the range of 300 and 400 mg of Ldopa daily) in order to skip meals and have negative fluctuations when I don’t need to be phisically active.

    Any “best practice” on managing symptoms fluctuations will be welcome!

  • claudio

    Member
    March 9, 2019 at 9:58 am in reply to: How to Improve Your Walking Speed

    I hope so, though treadmill (an aerobic exercise surely good for maintaining good gait amplitude and balance) is something I use more in winter and is one of several items I have in my “portfolio of physical activities exercises” that I use, in order to remain motivated.

  • claudio

    Member
    March 8, 2019 at 10:36 am in reply to: How to Improve Your Walking Speed

    I enjoy treadmill in the gym. I usually set 5%, 5 km/h, 30 minutes, once a week. The big advantege for me is also that you can put a tablet or a smartphone in front of you, so you don’t get bored. I enjoyed so much that I am planning to buy a treadmill to use at home.

  • claudio

    Member
    March 2, 2019 at 3:14 pm in reply to: Where do you live?

    Reggio Emilia, Italy

  • claudio

    Member
    February 25, 2019 at 7:07 am in reply to: Managing symptoms

    Hi Jean,
    I come to your points:
    Exercise: I think that we all agree there is no ground for a debate. All studies and clinical tests confirm benefit of phisical exercise (possibly vigorous and intense) as far as “no drugs” treatments are concerned. I too spend 10-15 minutes every morning for some stretching and muscles workoutl. In addition to that, I attend 2-3 weekly sessions of swim/bike/treadmill/pilates/yoga.To better benefit from that (trying to avoid sarcopenia and falls) I follow a diet of 1,25 grams of proteins per kg of weight, never exceeding 30/35 grams in a meal. Over all, wearing a fitness tracker, I assigned myself a target of 60 “active minutes” (bpm > 50% of maximum) daily.
    Dancing and Parkinson: here you find a link to a not too old meta analysis on the topic, but if you properly google again with appropriate key words, you may find more studies on the matter. In my case, I dance Argentine Tango a couple of times during the week.

    I can’t manage in watching you Youtube video. It says “unavailable”…usually I can watch every Youtube video. Are you sure is still there? Or there is a Continental restriction…. I am in Europe. Let me know if you fix it.