PD symptoms, med side effects, stress, low bp, low blood-sugar, diet, lack of sleep, heat & humidity...how do I know what's causing what?

I wish there was a monitor that I could wear, that would tell me what's causing what...I feel like I'm in search of a secret formula and if I could just figure it out, I could deal with this! One dose, meds may work great for 4-5 hours, another dose maybe 2 hours or not at all. Sometimes there seems to be a delayed effect, when I go 2 hours after taking meds and think that they're not going to work and surprise...all of a sudden, they kick in! Now, do I time the next dose at the scheduled time or from when they kicked in?

I have noticed this summer that if I sit in the sun or try to work in the garden in the heat and humidity, that I quickly become weak, light-headed, stiff and shaky, just like when my meds are wearing off. Normally, I would take my meds, but the other day, I couldn't make it in to do that, so sat in the shade, put my feet up and drank a glass of iced tea, within 15-30 minutes, all symptoms had subsided...without taking any meds.

Why is it that sometimes I can go to bed feeling meds are wearing off, becoming slow, stiff and tremor kicking in, awake in the night, unable to roll over or sit up on my own, however get up in the morning feeling fine, no tremor or stiffness and not having taken any meds in 8-10 hours? On such mornings, I am usually good for about 3-4 hours after getting up and then tremor and stiffness start kicking in, so then I take my meds. Other mornings, I'm stiff, shaky and can barely move.

If I have to drive on the thruway or expressway or in the city...major stressor for me, even if I time my meds accordingly, I get my tremor and what I call my uncontrolled movements (flailing arms and tapping foot). For some odd reason, I can no longer flip an egg without these failing arm movements. What the heck is that all about, it's not like flipping an egg is stressful! Then when trying to dice or chop something, I seem to either freeze up or go along willy-nilly until I can't stop or move my fingers fast enough and cut myself. I feel like a circus act at times, my husband will walk into the kitchen at times like these and say, "what the hell are you doing?" (After 12+ years, he still doesn't get it!)

Since I've been dealing with low blood pressure and blood sugar since I was a kid, becoming light-headed, shaky and even passing out is something I am used to dealing with. Therefore, when my meds are wearing off and it's time to take the next dose, my symptoms are similar, so I almost always eat with my meds. My pharmacist says to wait an hour, but it's become such a habit, when I get that shaky feeling, I feel I need to eat something, peanut butter is my go to thing.

I was diagnosed with pd 12 years ago, in my mid 40's, I hate this disease, I hate taking meds! I used to be an active person, so much that I wanted to do in life, now I feel as though I am a puppet to this disease. Though I try hard to start each day with a positive attitude, good intentions and plans for the day, pd has the ultimate control. I never get much accomplished and am so disappointed in myself by day's end. It seems like I'm always waiting for my meds to kick in or symptoms to pass or the strength, flexibility, coordination and balance that a simple task requires or the clarity of mind or energy that fades with the meds and as the day progresses.

I guess it's too much to ask to have mind and body in sync with this disease. So I guess unless I can figure out that secret formula on how to take control of the strings or someone discovers a cure, the puppet master will prevail and I will feel like I have fallen down the proverbial rabbit hole. Thanks for listening, it's comforting to have a place where I know someone understands the challenges and frustrations of this disease. Though they say "what doesn't kill you, makes you stronger", not so with pd...still alive and definitely much weaker!

60 Replies

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  • I am happy to listen as you said. Wish I had an answer.

    "glass of iced tea, within 15-30 minutes, all symptoms...." was interesting.

  • Dear Sedona;

    What a mess we are!! I hear you! I don;t have exactly your symptoms, but similar ones that come and go for unknown reasons.

    What do I do? I ignore them and work harder. Or crash when I can no longer keep going.

    Or I relax into them and let them be.

    I don't know what to say Sedona, it's all a mystery to me. I get mad too!

    Let's be friends and keep talking to each other.

    Hugs and love, Eva

    :)

  • How are you today Sedona.

    It is hot and muggy here in Salt Lake today.

    A friend and I did a little shopping.

    It is good to be back in airconditioning again.

    I hope you day is going well.

    Hugs and love, Eva

    :)

  • Good morning Eva, The last few days have been rainy and cooler here and yesterday I was quite pleased at what I accomplished, finally organizing the office. I have been picking away, but mainly avoiding it since we moved here 10 months ago. I haven't been to a mall shopping in several years, probably at least 5 or more! I buy most everything online, except groceries and drug store stuff. I actually love to walk and shop, just no one to go with. Take care & thanks for reaching out.

  • Hello Sedona;

    It seems I am forever organizing my office. Just picking away at it like you. I make that ok, because then I can work on other projects at the same time.

    I have a wonderful, I think it is wonderful, little garden outside my front door. I putter in it a lot!! That is good exercise too.

    I wish there were somewhere here I could post a picture of my litt;e garden.

    Hugs and love to you Sedona from Eva

  • Hi Sedona I'm in UK I have similar symptoms to u I hate this disease I feel cheated it's stolen all my dreams. I try to ride my horses every day some days I dismount and can't move. When I'm on the horse though im ok usually normal I can't however live on the horse ! So riding reminds me of what been normal is like apart from the pain in my joints that never leaves me. Being positive is important with pd but very hard when the body won't move !! I'll talk to you anytime lots of hugs keep going it's all we can do love Andrea x

  • i know how you feel andrea i can empathise with your comment that pd has stolen all your dreams,i was diagnosed 12 years ago aged 42 i had plans for my life but feel like i.ll never achieve them now.

  • Don't let anything rob you of your dreams Alan!! You may have to modify them a bit, or get new ones. But, never stop dreaming!!

    Hugs and Love from Eva G.

    :)

  • thank you eva.same to you x

  • Have you ever talked with your doctor about getting a deep brain stimulator. I had one put in six months ago and it has made a big difference in my life.

  • I don't know about now but as of a few years ago, DBS is for tremor only. It is not a cure all for other symptoms.

  • I'll be honest, DBS scares the hell out of me! I suppose some day, it may be a consideration, but not there yet. So glad to hear that it's working well for you.

  • Well, you do a great job of articulating the frustrations of many of us as we try to make sense out of fluctuating, ever-changing symptoms and the equally unpredictable 'potions, lotions, and pills' thus far available to remedy our situation. Hang in there!

  • Sometimes I wonder if they want to keep us sick so we will

    spend our money on the lotion and the potions> :(

  • You describe much of what I feel. I try to think of myself as an optimistic realist (or a realistic optimist), but sometimes the uncertainty of how the meds will work is very frustrating. I do know I feel better when I get more exercise, but sometimes find it hard to get started. For me, it's important to take that first step, if I can. Hang in there. It sounds to me as though you accomplish more than you give yourself credit for. The everyday tasks of living are good accomplishments in the face of pd. Perhaps if we give ourselves more credit it'll help.

  • I guess we all have days like you've described so well . It sure feels like nothing is getting done, but at the end of the day you can feel better knowing that we did the best we could. Some days are better than others. So glad we have a place to vent and help each other through this ☺️

  • Check out 2 things-- 1) Michael J. Fox Foundation is giving out IWatches for a study to monitor PD symptoms and 2) Deep brain Stimulation. I have had PD for nearly 19 years and am doing great!! Go to the gym daily etc. Worry not--the cure is coming!!

  • That i-watch sounds interesting, I'll have to check into it. I am so not ready for DBS, just too scary right now and like everything else with pd, unpredictable results. I really must get started exercising, I bought a beautiful Pilates machine a few years ago before I stopped working and have yet to use it. So glad you are doing so well, how long ago did you have the DBS?

  • I got my final DBS on April 8th (right side--already had left side on Nov. 8th of 2014). The key is an excellent surgeon and tuner. Ofcourse, it is not for everyone. 3 key symptoms are --tremor, bradykinesia, and rigidity. You must first have a 3 hour neuropsychological to rule out dementia.

    Suggestion--Low Dose Naltrexone 4.5 mgm nightly--see the book Honest Medicine & get on that Pilates Machine--wow!!! I love Pilates-just took a class last nite...

  • That is the best descripton I have ever read about how my world is. Thanks for sharing.

  • You are your own monitor but it takes a little discipline. I keep a daily log where I track a number of factors (not just meds) and how my symptoms react. Factors include what I ate (found that carbs and gluten definitely exacerbate my symptoms the next day), how well I slept (big factor), and how much I exercised. If I don’t exercise for a couple days my symptoms are worse and I get real tired. I also tracked my supplements for a while. Ashwagandha and K2 helps me… coconut oil doesn’t. And I tracked what I drank and found it helped… go figure. So now I drink Tito’s (gluten free vodka).

    But we are all different so you have to monitor yourself.

    PS Those with PD also lose their sense of thirst and therefore might not hydrate sufficiently. Make sure you are hydrating in the heat even if you aren’t ‘thirsty’.

  • My pd nurse suggested I keep a half hourly diary. A tad difficult when you are working all day (not confined to an office) I could be delivering training, be in a school or nursery, teaching a SEN child or in a meeting etc. Can't exactly halt all proceedings every half an hour !!!

    I did try during the holidays but I was busy so much that it wasn't practical and also that is not a normal day either so wouldn't be representative. Maybe when I have to give up working I might find the time !

  • every half hour would be onerous and unnecessary. Try to do it twice a day and you'd be surprised how much you learn.

  • I envy your discipline! I have thought of trying to keep a log of everything I do/don't do, (eat, drink, meds, vitamins, sleep, stress, heat, humidity, activity, etc.) but it's just too overwhelming and there are too many variables for me to ever make sense of it. I am far from being disciplined and admit to brain fog on these meds. When it comes to my diet and meds I find any routine difficult to follow. I don't start my meds at the same time every morning, depending on how I feel. Though I am always up early, (3am this morning) I may take them anywhere between 6-9am. After that, I usually try and space my doses about 4 hours apart, though it may be anywhere between 3-5 hours. Vitamins and supplements are sporadic as I have a terrible time swallowing pills and just can't do it sometimes. I drink a lot of coffee, but seldom after noon. I don't drink nearly enough liquids, but am working on that, especially since I now realize it can be adding to my low BP and causing me symptoms of wearing off of meds when it may be symptoms of low BP, blood sugar or dehydration. As far as my diet, I favor pasta, it's easy to chew, doesn't cause me stomach upset and is easy to prepare. I have never been much of a meat eater, even less now, as it's hard to chew and digest. I eat fruits, veggies, healthy cereals and my go to proteins are peanut butter, eggs and yogurt. Sleep is always sporadic, so thankful that I no longer work and can nap if I need to. Thanks for your thoughts!

  • One of my favorite movies is All that Jazz and there is a great scene where the lead Director character tells his dancer girlfriend “I can’t make you a great dancer. I’m not even sure I can make you a good dancer, but if you try harder I can make you a better dancer.”

    You can’t totally beat PD but you can be better. I know I am a whole lot better and I’m telling you that I have found it is critical that you:

    1.Take your meds at the right time and the same time each day (or close to it). Finding the right time is trial and error.

    2.Find the right balance of meds. If you are foggy it may be you are taking too many or too much. I backed off my Prozac. Change another to Siminet. Now I am functional.

    3.Exercise regularly. Exercise is the only thing that slows progression and alleviates symptoms! It also helps alleviate HBP. Start exercising just a little and then start exercising little more and then a little more… A bi-product of this is I am in the best shape I’ve been in years.

    4.Find the best diet for you. It doesn’t take that much discipline: When you are having a bad day log what you ate the day before… When you are having a good day log what you ate the day before and note what you didn’t eat that you usually do… I found out as have others with PD that I am slightly glutton intolerant. You may want to try glutton free pasta and see if you are any better.

    I don’t mean to preach… Just noting a little discipline can make a significant difference.

  • Let me just say...I believe in fate and the fact that you just mentioned, "All That Jazz" must mean something, as it has a very personal connection for me. I appreciate your advice and thank you for responding...I believe this is a sign that I need to follow your advice and better times will indeed come.

  • Well it is nice to think I helped. Please keep me posted on your progress.

  • great description of the chaotic symptoms and drugs.. I am in about the same boat.

  • Never underestimate stress. A full bladder (even if I don't notice it) will stop me in my tracks. I dont' have tremors (unless I watch shows that are high-stress or low-stress and med-stress) in other words TV is stressful for me. Otherwise nothing else causes me tremors and my problems are all motor related. I suggest try a gluten--free diet. Also keep protein steady but in very small amounts during the day and load up on it at dinner. Especially watch out for chicken or fish during the day (high protein).

  • I am hearing gluten free a lot, is there some association with pd?

  • Not that I know other than it can lead to inflammation. PD and almost every major illness has inflammation associated with them.

  • Books like 'Grain Brain' and 'Wheat Belly' cite recent studies and draw strong correlations between the advent of 'industrialized' wheat production (gluten) and the ensuing pandemic of modern diseases like diabetes, obesity, and various neurodegenerative diseases (inc. Alzheimer's and PD). The seismic shift in the consumption of carbohydrates in modern times (like wheat, corn, HFCS, etc) together with all the other forms of sugar ignites the systemic inflammation at the heart of these modern maladies...

  • I was getting the same symptoms of weakness, dizziness, and feeling like I was going to faint when I was in the sun or high humidity. My Neorologist felt my blood pressure was too low ( was on 2 meds for BP) so he took me off one and also said I wasn't drinking enough water. Many PD drugs can cause dehydration. That's probably why you felt beter after drinking some ice tea. Just something to think about. Glad you feel you can vent to us.....

  • HI Sedona,

    Reading your post I could not have worded it better should i have been writing about myself. I identify with you on every front. I wanted to try stop the medications as felt they were and wanted to blame them for a lot of what i was going through. This is not the case.

    The meds are to blame only for some things. In my case one of the things when the meds kick in is i get to have to have the flailing arms, clenched fists ,erratic movements and the pain that comes with doing this continuously. Busy clenching my left arm now whilst writing this but the good thing is i can type.

    The alternative with no medication or at end of dose failure being the slowness, stiffness, freezing and over all uselessness that is PD. This stiffness and pain when limited to the arms and legs is fine but when it moves into the back and midriff which it has done the choice regarding the meds becomes simple. I have tried cutting down on the meds with the result being that i will not be trying that route again in a hurry.

    Two things have helped me hugely of late as i was in a real mess. I live in Perth. My neurologist put me in touch with the West Australian Neuroscience Institute. I wore a bracelet for 10 days which showed the extremes i was having from when the meds were kicked in or off. I had not realized the importance before of taking the medication on an empty stomach and at a set time. From reading your post i think you would benefit as i have by taking your meds on time and on an empty stomach. Eat half an hour later.

    I got myself a timer and currently take,

    Sifrol 4.5mg extended release, Symmetrel 100mg and Stalevo 200mg @ 06am

    Stalevo 200mg @10am

    Symmetrel 100mg and Stalevo 200mg @1400

    Stalevo 200mg @ 1800

    Taking meds on time, exercising and eating well all help me to function. I am 46 so have a long way to go.

    Hope this helps you a little, as it has me.

    cheers Andrew

  • We sound a lot alike! I fought going on meds for a few years after being diagnosed and though have long since resigned myself to my need for them to function, I believe my failure to stick to a med schedule is at least somewhat my last ditch effort to challenge this disease. Some weird part of me thinks that makes me in control, when really it's probably just the opposite. Hmmm...Oprah would call this a light-bulb moment! You have helped me, thanks Andrew! (By the way, I think I get less flailing arms on Rytary than Carbo-Levo, though just switched a few weeks ago.)

  • Thanks Sedona, best of luck to you going forward, cheers Andy

  • Hi Sedona,

    I too was diagnosed with PD 12 years ago and have the much of the same troubles with my meds and symptoms as you describe.

    in 2010 l had the DBS surgery. It calmed my hand and helped some with the shakiness and gave me a baseline that I could function at from which I could have my meds take over. I'm getting the feeling from the other replies that we all have the same inconsistencies with the reactions from our meds as you do. It will never be perfect but we have to contend with the same issues.

    And my kids and wife, as much as they try, have no idea what this disease is like. They are always urging me to"stand up straighy" or comment that my posture looks like an old man, etc. However they are right to push me into exercising as much as possible. It's one of the few times that I feel good.

    Talk to your neurologist about DBS. Maybe it's the right way for you.

    GOD BLESS AND KEEP YOU. I'll keep you in my orayers!. Please don't give up or lose hope.

    Ken (bicycling with pd)

  • Hey Sedona and MovingandGroovin . . .

    I am one of the "first 50" in the MichaelJFox "with the Pebble Watch" trial people. I think that this type of "monitoring technology", combined with Big Data analysis (the watch-Smartphone reports in to Data Central every 15 minutes, currently data collected amounts to 30 Meg per month)... is the future and offers great promise. Especially in that the idea of the Fox project is to provide YOU and your MD with reports.. reports that are not reams of data but rather something very important. Constant monitoring (outside of the MD's office) of when medication is taken, when tremors occur and their severity. That and disease progression. So one's MD is in a much better position to evaluate the efficacy of particular drugs applied to you and to see "objective" data back. Timing is very important especially in advanced PD.

    I suspect that future renditions of this type of technology will expand to more sophisticated monitoring.... Blood Pressure being one, voice changes, pulse, etc. We are indeed on the verge of knowing a LOT more about PD and the prospect to me (a software developer) is quite exciting. Even more exciting because I have PD.

    However, we ain't there yet. Its remarkable how often my smartphone and pebble are separated physically so far that they lose connection. (I am going to purchase a belt holster to remedy this problem). The watch collects movement information and tremors (provided that you movement is your left arm, your tremors are in that arm. Unfortunately my tremors, while on the left side, are confined to my left leg. (I have suggested to Fox that an elastic cuff that would allow attachment to the appropriate limb that experiences tremors). Also progression of PD starts on one side of the body and migrates to the other (when you graduate to Stage II). This advancement would not be noted if the watch is attached to the appropriate limb.

    Then of course there is the privacy issue. I often (humorously note) when I introduce the watch to others.... I say, "It uploads information every 15 minutes . . . including our conversation ..." Which always gets a few nervous laughs. However, seriously.... there "private moments" (and I'll leave it at that) when one does not wish to have monitoring information broadcast to the world! Not that that is an obsession... but we are all being watched, listened to, Geo located (you can get auto insurance discounts for having a black box in your car which records acceleration/deceleration and everywhere you go ...).

    I think this monitoring has many very beneficial aspects for disease control, and is especially for Parkinsons. So I think you couldn't have acquired PD at a better time in history.

    Frank

  • now that sounds more like it. A watch collecting the data for me !!

  • I'm going to ask my neurologist about one of those watches, thanks for your thoughts!

  • if you find the answer please let me know !!! I have been Dx for 4 years now and I still work full time. I too have times when the meds work for hours and other times when they seem to stop working after barely a couple of hours. Eating helps me too, I need to eat regularly or suffer the consequences.

    My main problem is that I am mostly ok during the day but evenings can be a challenge. I get very stiff and achy and the tremor is definitely worse (annoying when I am trying to deliver training in the evening).

  • You obviously know from all these posts that you are not alone. Many people have already told me that they wished they had my book from the beginning of their journey. But, since it was just published in April, they had to go it alone. I wrote it to help PwPs in our varied experiences. "If I Can Climb Mt. Kilimanjaro, Why Can't I Brush My Teeth? Courage, Tenacity and Love Meet Parkinson's Disease". nanlittle.com

  • "If I Can Climb Mt. Kilimanjaro, Why Can't I Brush My Teeth?" Love it and it so describes pd! Not that I could ever climb a mountain, but there is much I can do at times, yet often struggle with something as simple as brushing my teeth. I'll have to check out your book, is it on Amazon?

  • Yes, it's on Amazon. I'm glad it resonates with you.

  • Yes it is hard to maintain homeostasis with pd. my husband has or has had all the symptoms you mention so what is listed below is only opinion resulting from observation and not medical advice which I am unqualified to give. We have found things one can do:

    1. The temp mechanism, in PDers like old people, is fragile. You cannot work on the garden when the weather is hot and humid. If you work on a cool day then limit your time there to 15 minutes and then stop. Go back another day.

    2. Many PDers cannot take their meds with food as protein contains an enzyme which interferes with the action of the carbidopa/levadopa. Just stop doing that . do not wait to eat your blood sugar snack. As you must know, controlling blood sugar with diet requires eating proactively, not waiting until you have the shakes.

    3. Flipping an egg or doing anything requiring digital dexterity like slicing, buttoning, etc. puts into play a large number of small body movements. All these tiny movements have to be integrated into one big action in order to do the task. I believe the integration of muscles, tendons, ligaments, etc. is problematic for PDers. In tasks that require repetitive motion, there is an additional problem. You might find that you could cut a boiled egg in half with no trouble but once you go for additional slicing, chopping you have what PDers have when they start walking and can't stop when the want.

    In using your hands like this, you will have set off a muscle motion which you can't instantly stop.

    Adjust what you do with your hands and if it is absolutely necessary to perform that act, only do things like this when your med has kicked in.

    4. It is common to have down time when the med doesn't work as well. Many have this in the afternoon. It may be related to your body rhythms or need to rest or both or something else yet unknown.known as 'off time'.

    Reserve that time to take it easy and avoid tasks.

    5. There are PD 'breakthroughs' which appear when one is stressed and the symptoms appear to override the med. that's why you can be completely 'covered' by your meds but have an episode of symptoms which suddenly appear. That can be the result of getting too nervous, too excited, too hot, too cold, too much physical activity, too anything. Your body will use up dopa at an irregular rate, depending on what you are doing. Sitting down peacefully uses slowly...exercising or hearing bad news about a friend uses it up faster and sometimes you temporarily run out. thats why you can recover after you sit still ...allowing the dopa supply to build up again. Noting that you drank iced tea may indicate you not only stressed yourself, thereby diminishing dopa, but might have been dehydrated...a common problem. You must stay hydrated or the electrolytes might go askew.

    We use Purecaps Electrolyte powder before any exercise or to recover from an event.

    6. There are various reasons for shakiness etc from hypoglycemia. It may be a yeast overgrowth and not low blood sugar. It may be food allergy or food sensitivity. Get tested.

    7. It sounds like you should not be driving...just like chopping and dicing, it requires integration of dozens of pieces of information and PDer can't do that...how fast to go, when to brake, when to change lanes, how fast is the guy behind me coming up, are there people on my right, on my left, constantly checking rear and side mirrors?!? No! PDers can't do all that. I am sure your doctor told you that you can only do ONE thing at a time. Even doing one thing at a time still requires integration of numerous small movements over which you have no control. If he didn't, get another neurologist who specializes in PD and can instruct and medicate you better.

    8. Your husband better get it. He MUST learn to cook and do all the things which require daily effort but which trigger your symptoms. This is a relentless disease which does not reverse. Going forward, he or someone else WILL have to do those things so he better learn now while you can teach him.

    9. We use an alternative doc to advise on supplements and ways to prevent onset of constipation and all the other annoyances that are a part of PD. right now we have a naturopathic MD.

    10. One must exercise everyday and there are special ones for PDERS. In the U.S., Medicare covers rehab repeatedly to deal with this.

    Hope all this helps.

  • Wow, thanks for taking the time to comment, it certainly sounds like you know of what you speak. I appreciate the view from the caregiver/spouse, often times the perspective is better from the outside looking in. I guess my stubbornness and attempt to not let this disease control me and continue living on my terms is not necessarily the best route. I will look into electrolytes and definitely work to improve my diet and med scheduling. Thanks again!

  • I deal with much the same issues as you do. Sometimes on/sometimes of/unable to turn over in bed/low bp-pulse rate in am 40. You can deal with these problems. I have and the last two years have been the best of my 13 years with PD. Checkout my website shakinghands.ca and if you are interested try out my book Shaking Hands

  • u have expressed my thoughts so well...........................this is a terrible disease.... you can look so normal, but feel like the plug has been pulled!!!! on a moments notice!!!!

    well so many side effects too!!!!

  • Hi Sedona,

    I was diagnosed with PD about 12 years ago. I was prescribed Requip from the start and later on Sinemet. After 12 years of Requip and similar frustrations as you describe, I learned just how destructive this drug can be.

    I am happy to say that after 2 months of detox, i am finally rid of that monster! Is there anyone out there who is aware of this?

    Proactive4us

  • So what are you taking now? I have to admit that I have always wondered if my symptoms when the meds wear off were symptoms of pd or drug withdrawals. To my knowledge, they are quite similar.

  • I started reading your post, when suddenly, I had the urge to stop and scroll down...to see whether I had authored this piece! You described, in the same disturbingly accurate detail, exactly what I experience. I have those very same variations in my body's response to the meds. I, too, have been in situations where I go without the meds. And then, in 15 to 45 minutes, just like you, my symptoms will subside. Are we rarities, or maybe I need to be more diligent in reading all the other posts. How many more PD sufferers experience these same fluctuations? 5%...15%...75%

  • I am beginning to realize (thanks to all the responses) just how all the variables impact how we feel at any given moment. It appears that the more disciplined, regimented and routine oriented we make our lives, the less fluctuations we'll have. Boy, am I not the right person to be dealt this disease....think I can trade it in for another?

  • Ditto!

    Here is a poem I wrote for all of us, I hope you like it!

    Gratitude

    I wake, before the sun thankful for the glory of darkness

    I rise, thankful for my drowsy sleepy thoughts, my brain, my beautiful mind

    I stand, thankful for my humanity, my beating heart, the sincerity of my Soul

    I wash, thankful for all my challenges, my inspirations, my gifts, my life

    And I watch as the infant sun explodes the horizon, to reveal the landscape of our world

    I’m thankful for who I am now and will be

    I’m thankful for your smile when you see me

    and for your unalterable love.

    Go for it, no holds barred and no regrets!

  • Love it! Thanks for sharing, I really enjoy reading and even dabble a bit in writing poetry.

  • I think that some of the OP's experiences can be explained by:

    - protein in the diet (affects the take up of levodopa - can lead to a wasted dose);

    - gastric emptying (if this doesn't happen, the levodopa can't get to the right place to be absorbed - can lead to a delayed effect from a dose);

    - dopamine reserves and dopamine production still exists (can lead to good periods without drugs, especially in the morning).

    John

  • How can we then jump start that dopamine production?

  • The only way to (maybe) increase dopamine production is to exercise and enjoy life as it is, that is what I believe anyway! Dopamine is the happy molecule Accept that you have limits, but don't let them get or keep you down. Try Power walking, Jon Pepper says it helped him tremendously, I am doing it now and so far I do it almost daily and like it. Don't worry about stumbling like a drunk around the neighborhood and what people think, they have no idea how you suffer. Have compassion for their and your hubby's lack of understanding, they cannot know what you've endured for 12 (me too) years

    Also you might try Fighting Parkinson's Drug Free.com. Howard Shifke claims he cured his PD using Qigong and positive thoughts and actions, he is a font of optimism at the least and a source of Hope for me (at no cost, unless you want or need counseling)! TRY it why not? Good luck and thanks for your kind words about my poem...jmc9696@gmail.com if you have questions

  • I understand you I have the same symptoms, hang on, theirs a cure coming for our condition

    Love Serg

  • Sedona,

    I haven't posted a reply in quite some time. Your note, your pain, touched me deeply. Please know this - You aren't alone.

    Going down Parkinson's winding and perilous pathway isn't a very pleasant reality. Our stories are almost identical. Yet, Parkinson's dark grip wasn't noticed in my case, until I was 51 and by that time, I had battled cancer for the first time, fought depression, had a TIA, and endured six vertebrae being fused due to spinal stenosis.

    Emotionally, that decade of my life, was the lowest point in my life both emotionally and physically. A beloved sister died, my only child moved across the country with her new husband and my marriage 27 years disintegrated into divorce.

    I don't consider myself to be especially religious or strong. I simply refused to allow anyone or any thing to bring me down. Yes, At times I felt sorry for myself and I cried. I cried until my eyes burned, my throat became raw, and my head pounded! Then I said to myself "I didn't ask for any of this,. I'm not going to let any of this crap overwhelm me". I couldn't change what was, I could only alter how I responded to these issues.

    It is true -we can't at this moment prevent this insidious monster, reverse its course, or hault the relentless progression! But I'm hopeful with all the current research. I've even participated in some trials. I it Empowered me to do so!

    I can ONLY offer you :- what has been helpful for me. I'm sure you can come up with even a more extensive list.

    I try to enjoy good days as much as possible. I practice yoga, takie deep breaths, turn on soft music, take short walks, work in my garden, drink herbal tea, watch my cats play and read to and hug my grandchildren, as often as possible. I also belong to a Parkinson's group that meets once a month and they provide a great deal of support.

    Sedona, do what you enjoy. Even try new activities if you're up for it.

    I've backed away from toxic people, turn off disturbing news or programs on t.v., I rest when I'm tired. If I have to cancel an appointment because I'm having a bad day. I don't beat myself up for that. I notice I'm prone to tremors when I'm stressed or it's very cold or hot outside. I alter my schedule if necessary and have a back up plan. I've reduced sugar and salt in my diet, arranged furniture so I'm less likely to fall.

    I also, proactivally installed handicap accessible features to my bathroom. A ramp was installed on my front porch, (even though It isn't needed). Next year, with the help of my son-in-law and my handyman we'll complete a cozy bedroom/living room in the basement. I intend to remain independent and living in my home as long as POSSIBLE. .Some day it can be occupied free of charge by a nursing student at the local college in exchange for assistance., whenever that comes necessary.

    Sedona you have a beautiful name and from what you wrote you possess a strong spirit. I wish you well in your journey.

    Your Parkie Friend,

    Bette

  • Hi Sedona I can relate to all you wrote I'm about 12 years since DX it is great that you put it in hard copy it somehow comforted me to know that others understand how we feel about this monster disease that changes its appearance with the wind despite this instability in our lives there are times when we are nearly normal I try to focus on and reinforce in my mind those good hours occasionlly nearly a whole day wow! .Thanks again for sharing your experiences it has made me feel a little less alone

    Wishing you all the best keep positive Sunnysky

    Ps I also have a husband who doesn't. "get it"

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