Anybody here have any days that are anywhere near normal

Howdee. Diag 2016, 63 , on azilect nac and

Mannitol. Main symptoms , tremors which are increasing and cognitive impairment. Exercise like crazy. 30 m on bike , lift weights plus some yoga. Does anybody have days thst they feel just ok. All these blogs have negative

Posts one after another. Im already depressed and need someone who is doing ok to sound off. Thanks, end of rant

Po

33 Replies

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  • Ameister, Have been searching for clues in what you call your "rant" in the hope of finding some brilliant insights into the causes of your depression. Until more sage advice is offered, consider this, from a Parkie who, at the moment, feels "just OK". Tremors, in my case, subsided after switching meds to include l/c dopa. Cognitive impairment is a serious problem but one which can be treated medicinally and with "mental exercise". You say that you exercise like crazy. including 30 miles on a bike. The bike is fine, but a little speed-walking daily keeps you standing erect. Finally, in your last question, you asked, "Does anybody have days when they just feel OK? I'm curious to read the answers to that one. For now my answer is a simple yes.

  • I thought I'd posted but it disappeared! I'm 59, diagnosed in 2014. I'm sorry you're feeling not great, Po. In answer to your question, yes, I feel ok a lot of the time. I take 6mg ropinirole,1mg aziclet, lots of supplements, emergen c. I exercise. Like Ronn said, although I do mainly stationary bike and PD warrior, walking is important. I have found the days after I've walked a couple of miles are much better. Morning is my worst time, as stiffness is my main problem. Ii try to move about - sitting still is the worst thing for me, although Ihave quite a sedentary job, so I have to build it in.

    I think the thing I find frustrating is that I have to work quite hard to feel ok - I can't just dash off! I have to allow more time. But its worth it. I'm still working (part time), driving, going out, active family. So yes, three years after my GP suspected PD, (I'd definitely had symptoms for six years), I do feel a lot of days are normal. Sometimes not so good, but more good than bad.

    Sue

  • I was dx June 2015. Started taking Madopar Oct 2016. 150mg/25mg 3 times a day. 63 yrs old.

    Exercise most days. I have minor symptoms. Once i started meds i forgot about pd most days as i was feeling so much better.

    Stay positive. There is life to live even with pd.

    All the best.

    Denise

  • I'm nearly 69 diagnosed 6 yrs and all my days are normal!

    Cycle 50km twice a week, play tennis 2 hrs twice a week, power walk at least once a week. Have a really active social life ,quizzing,meals out with friends.spend winter in Spain summer in UK.

    Since spending a week at the European Parkinsons Centre in Italy, I learnt and accepted PD is living with me ,I am not living with PD. I am in control not PD.

    I practice mindfulness .i live in the moment, live each day to the full, as if its the last,don't dwell on the past what life was or the future what might be ,just enjoy every day every moment.

    I'm a PWA and will never give up

  • Did you find your time at the Italian PD center helpful and worthwhile?

  • Yes very both mentally and physically.

  • PWA = Person With Attitude?

  • Yes

  • What was the Parkinson's centre like? Is it worth visiting ? How long did u go for? Thanks

  • You can read my post on EPC

  • All is not lost! It all depends on how much you are prepared to put into dealing with your Pd. I don't mean MONEY, mean physical effort. I was able to overcome most of my Pd symptoms 15 years ago and have lived medication-free since then. I am now 82 years old.

    If you want to know how I did it then read my profile.

  • Feeling sorry for yourself HUH, that's ok, its normal

    Normal ?

    Like I used to be? No

    Like other people? No

    Like yesterday or last Tuesday or any other No

    A good day ? the definition is changing, Get ready, get used to it.

    Not trying to be cute or funny, completely serious , reality, nothing is the same, the rate of change is increasing, ability to affect change diminishing. PD is not just some thing you can get rid of by walking a few blocks fast or otherwise , but your exercise is good, keep it up. Hope you are able shake that depression and be happier soon and get the most out of what you have been given. LIFE , get on with it , no re-do. Sorry if I am preaching. Be happy

  • I have to say that I am doing well. I exercise daily and stay active. I take sinemet, azilect, and mirapex. This combination of drugs works well for me. We are all different. I was going down hill quickly before I started taking medication. Taking medication has given me my life back. I am so grateful.

  • Hi Po,

    I feel good most of the time. Like you, I'm on Azilect, NAC and Mannitol, but my main medication is Madopar. I also do 40 mins of high-cadence cycling every day (click on my name to see the details).

    You say that your tremors are increasing. This is often a sign that it's time to consider adding Madopar/Sinemet to your list of medications.

    Jeff

  • Agree, adding levodopa in the form of sinemet or madopar makes a big difference.

  • Hi Jeff. Does mannitol work?

  • Someone asked me that recently, on a different thread. This was my answer:

    "I've been taking mannitol for 6 months. I've also been taking N-Acetyl-Cysteine (NAC) for 3 months. I've also been doing 40 mins of high-cadence cycling every day for more than 12 months.

    Things have been going really well for the past few months. How much of this can be attributed to mannitol, and how much to NAC (or the combination of both!), is not clear to me.

    Mannitol might also be neuroprotective. This is something that is best measured over a period of years, rather than a period of months.

    Putting a tablespoon of mannitol in my morning coffee each day is not very difficult, so I plan to keep going with the trial at least until my current stock of mannitol is used up (late next year)."

  • Mannitol, a dietary ingredient, should be easy to find on the market , right? Any guidance for the right brand / source?

  • Hi AmyLindy,

    A few of us are taking mannitol as part of a trial being run via a website in Israel:

    clinicrowd.info/parkinsons/

    If you decide to join the trial, you will need to complete a survey, after which you will be given information regarding recommended dosage, retail suppliers etc.

    Jeff

  • I feel very good most all the time unless I am sore from working myself near to death in the gardens, but it is worth it. Looking forward to fresh vegies and herbs growing all summer long.

    Aunt Bean

  • do you sell the fava beans

  • no, I don't sell anything. I work very hard to supply my own needs so that I can keep functioning normally. I welcome people to the farm to teach them what I do. I have tried to write clear instruction on Neurotalk and on Robert Rodgers site (parkinson's recovery ). I hope in some way that it has helped a few people. There are sites out there that sell canned fava beans and fava juice. I think there's even people that sell capsules with fava. Hope this helps.

    Aunt Bean

  • Doing well? Yes. Doing as good as I was 3 years ago? Not quite. I have been diagnosed for about 2.5 years and still working full time in a pretty stressful job. I walk 2 miles per day and try to do more most days but the household chores get in the way. There is really nothing that I cannot do now that I could do before PD. There are days that I just don't feel quite right and I get tired a little easier, but the days that I am the most active are the best. I tend to forget about the PD if I am doing manual labor. My desk job makes it easier to notice my tremor, but if I am moving around, I don't notice it. I just went to the Doctor to up my C/L a little to address my symptoms. I don't think I would be doing well without the meds.

  • Why not try some sinamet? You'll feel much better. Might even forget you have PD for a while.

  • How about Lumosity, the brain game that purports to sharpen cognition? I've just resumed after three years away from it and found that with practice my scores on several games were as good or better than what they were three years ago. I feel the games will prevent mental slowing and/or improve my cognitive faculties. At least, that's my hope. Have others found improvement through these games?

    Hoping to hear 'yes'

  • I have an occupation that is tremendously challenging mentally. I love it and I am sure it helps to keep my mind sharp.

  • Oh lord, I'm addicted to luminosity! It's great. I play against my 18 year old daughter. Anyone cracked level 12 on the train game? Yes, I think it helps improve my thinking, but I've a bad habit on doing the games that play to my strengths like planning, and not my weaknesses (numbers). Also, I am very fortunate to have a really interesting job which is pretty flexible.

  • Scuttlebutt from the Web asserts that brain games (those designed specifically for education) only improve the specific skills you practice in the games you play and do not transfer to other brain abilities. If, say, you solve Sudoko puzzles, that is what you get good at. But it doesn't improve your memory, attention, or executive function, among others.

    ncbi.nlm.nih.gov/pubmed/204...

    Disappointing, and something Lumosity would never publicize! But the cheery news is:

    a) video games (for entertainment) *do* transfer more widely

    educationalneuroscience.org...

    and

    b) that *physical* exercise does improve brain fitness overall. Keep on moving!

  • I have received benefit through the practice of Wisdom Healing Qigong. I have been able to reduce my Sinemet dosage by 2/3. I intend to write this up when I get a chance.

  • I would be interested in learning more about Qigong. Congrats on reducing your Sinemet dosage. I'm working on that too, as well as reducing Pramipexole by 50%.

  • Thanks for all the replies. There is no consensus anywhere. Medical community, patient community. Some say gobon meds while others tout reducing meds. Information is all I was seeking. Some good info to have when i see the movement guy at jhu next week

  • I just have to be difficult. When I use to push myself with exercise my body would ache about 2 hours after. I need some type of muscle relaxer afterwards. I am still trying to determine what is exercise.

    I had a funny thing happen last year when I was taking my annual test to check the progress of the disease. The person that was giving the test told me an amusing anecdote about one of her patients that listed laundry as part of his exercise regime. She thought it was so funny she had to tell me. What she forgot was, that patient was me. lol

  • I have normal days like James Bond has normal days. Now you know why he loves his martinis.

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