I will be blunt, sorry but there is not time nor ability to do otherwise.
1- What is PD
My first neuroligist was head of neuroligy at an internationly recognized major hospital but he died 15 years ago. He said that some day the illness we now call Parkinsons will be identified as 8 to 10 differant diseases, maybe more. Be careful comparing your situation.
2- how will it progress
see above
my expieriance 16 years diagnosed: it holds back , things are not too bad, then you have a bad day but the next day is the same and now you have anew normal -not as good. Every once in a while you have another bad day but then the bad days with their life changing ways start coming more and more often while you try and adjust.
3- Your life
you are running out of time and you do not know it.
find a way and retire, downsize , find a small afordable one level house or Condo, safe quiet area, backyard, close to shopping and hospitals, nice view , good neighbours or close to relatives, public transportation. Add ramps, handholds , etc and put some money into savings NOW
4- Exercise
Strenuous forced exercise , stationary bike, walking what ever. do it and keep doing it . It is the only thing that will save you. With out a rigorous daily plan followed diligently starting NOW you will be in trouble. (NO if, no and, no but, no bullshit)
5- Planning has to start now, that means, loose the denial, loose the niativity stop the belief in magic and start making your future life with Parkinsons better now while you still can. Get rid of stress and the people and situations that cause it. Stress aggravates PD and PD creates stress.
6-Pay attention to the non-motor symptums.. Failure to do so will result in other things wrong with you and if they pile up, you are done. Depression, dry mouth, dry eyes , constipation, sleep, dry skin results in
loss of support
lose of all teeth
loss of vision
Do you know how they fix a compaction
Sleep when you can
cracked dry skin, add bacteria = loss of circulation, leg or life
etc
Unattended Non motor syptums will give you a man deaf , nearly blind with one leg who smells funny in a wheel chair.
7- time
now get out there and get moving
ohh yea one more thing BE HAPPY, NOW
its later than you think and you dont know what the hell is coming
YOU CAN DO THIS
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GymBag
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Hi GymBag. Great post. From my own experience extreme exercise is the only way forward. It's the" getting started" that is the hard bit. Take running , I fell over so many times at the start (4,yrs ago) that I very nearly gave up. Bruised and battered I taught myself to " stand upright swing your arms" , it took 12 months at least before I dare look at my Smart watch to check my times. Now I run ,5k Parkrun s most weeks, the occasional 10km. This coming Saturday I am doing a duathlon 5k run /20k bike ride and finishing with another 2.5 k run. Also I am only 6 weeks from my first marathon. The training is hard but the medal and T -shirt are a constant reminder that I can still hack it.
Gym Bag. I am 75 yrs of age (please note not 75 yrs old) PD diagnosed 4 yrs + ago but the symptoms were there for at least another 5:yrs. As a problem I consider it to be a bucket of s**t but I will not bow down to it. I have run all my life and love it even more now that I have managed to incorporate it into my daily life again. Just added an edit ......... I am still trying to learn to swim again. I intend to do a Triathalon later this summer. Some how PD didn't like me running or rideing a mountain bike or swimming. It turned something off in my head.
Keep going mike, incredible , determination and guts. I know it hurts more than you say. Good example for the newbys that they can take control and do it.
I just came back from a tele-conferance meeting with my neurologist / motion disorder specialist, who is a very smart guy, and luckily also very patient. I don't think that I am an ideal patient. I asked him if I was a candidate for DBS . He said NO, reserved for absolute worst case, very risky, I am too old .
Which leaves the only option open to me , travel to Lourdes France and get a miracle.
Hi gym bag, You said how it is very good. My wife has had Parkinson's for 15 years from date she was told, but as I look back think she had 5 years or so previous. She is very active would hike grand canyon each year and other places. We live in the country and always got things to do. It appears the carbolevo is not working doc just adds more, think she has become allergic to it. We still do fast walking, you would not know she had Parkinson's. Next minute she crashes and I have to move her in wheel chair. It use to be freezing for a few seconds but now immobile up to 12 hours. They had us do other meds work a bit then stop and I notice with them it made her down time longer we stop them so the drugs has caused our living he'll, but of course doc says other wise. We seen several different one a new one this week. Thanks
I take a bunch of Ldopa (more than twenty four 25-100 tabs daily) and it is seeming like I am allergic to the Ldopa as well. I can go from walking pretty good to instantaneously not being able to take another step; my wife needs to get the wheel chair. This cycle is every 2 hours all day and night. I have times where my Ldopa does not work at all. I trying to be more strategic in my use of Ldopa rather than just taking more of it; as you can see, my daily intake far exceeds most PD patients.
I have found several things to be helpful you might consider:
1. Caffeine is very helpful to keep me moving; take small doses (50 mg at a time). As you may know caffeine effects the 2A adenosine receptors in your brain and they are located near the D1/D2 dopamine receptors. The 2A receptors have some control over movement that support the D1/D2 receptors. I have several medical studies, in hand, that discuss potential benefits of caffeine. The caffeine keeps me moving (alert) a small amount constantly (not like a dyskinesia type of movement); a small buzz. Too much caffeine at a time will give a bad effect however.
2. Protein really kills my Ldopa effect. Most PD patients take so little Ldopa compared to me so they won't feel the effects of protein. It is known by the medical researchers that meat (especially milk products) and plants that are amino acids will take precedence in the digesting process over the Ldopa (which also has the same amino acid chemical structure). I find that keeping any protein until late afternoon really helps with my daytime movement. I am so sensitive to protein that I prefer to completely eliminate it from my diet. This unfortunately has other bad results.
So take 50mg (1/4 of a Nodoz pill or a cup of coffee) with every 200 mg dose of Ldopa (2 tabs of 25-100) during the day and don't eat any protein (no more than 6 mg) until after 6pm. (0.8 gm protein/kg of body weight / day is a typical daily intake)
The doctors won't give much credit if any to either of these ideas. It works and there are medical studies that back it up. I am more than happy to send you the medical studies if you are interested.
I have really nothing in the morning; a handful of peanuts (5 gms of protein) maybe and a glass of O.J. By lunch time I am hungry and have a caffeinated soda (rather than a caffeine pill) along with a sandwich that is low in protein (light turkey meat or a slice of cheese) and dinner, we load up on protein if I am able to time the meal. I treat myself to pancakes (no bacon or eggs) on weekends sometimes.
The key is do not eat anything for 30 minutes after the Ldopa dose and then quickly eat the protein (within 10 min). Then make sure you wait at least 90 minutes (2 hrs is better) before consuming any protein again. Most PD patients have several hours (minimum) of on-time between medication; so timing is not so critical. I have about 45 minutes of ok on-time and 75 minutes of off-time between cycles so my timing with protein is critical.
I suggest that you experiment with protein timing and also caffeine usage. It really is beneficial.
Good question. I took a very big leap to say that. The reality is that one must really define "on" and "off". Each person has a different idea of what their "on" and "off" is considered. There are also medical descriptions of these states. We also change our baseline of what feels good to us as the PD progresses; this might be considered an "off" condition today that will be considered a liveable "on" condition one year from now.
I have a big transition period where my on and off behavior is manageable but still at a impaired condition where I am not productive in any physical or cognitive way. I consider my severe dyskinesia that takes over as the Ldopa takes effect and just as it wears off, as the transition. My "on" is that I can function in a basic way (eat, walk but not run, make basic decisions, speak without an impediment and maybe crack a smile). My "off" is complete physical immobility (can not keep my head upright or arms up), weak voice, poor verbal fluency, my muscles contract throughout my body, dystonia appears in my toes and fingers, anxiety and frustration rises.
My general statement was based on my reading these different posts and seeing that PD patients were not really describing their on/off cycling times in terms of minutes rather instead by hours. Their Ldopa medication was not listed in terms of tabs per hour rather than by tabs per day.
Everyone is different; I will be more careful on judging people and assuming that I am the only one who is really struggling. That is not the case.
dboobar, many thanks for your detailed reply. You are not in a good way!
I agree that everyone is a bit different and my ons and offs don't really have a transition like yours. Going back a bit, I had DBS a few years ago. This was because I had biphasic diskinesias that involved my whole body and often left me rigid, twisted and unable to walk. My neurologist(movement disorder specialist) diagnosed the diskinesias, and my ons and offs were also identified by him and others. So a medically identified, which was just as well as I was still mostly in denial about having PD (I found this neuro after I moved cities. Previously undiagnosed and untreated for ten years. So the 'drug sparing' did me no good. Diskinesia onset after about two years of LDopa/Sifrol.] I was stuck since if the l-Dopa dose was decreased to reduce the diskinesias I was badly disabled by the PD. A classic catch 22. I note you comment on your diskinesias which are presumably caused by your high l-Dopa doses? Have you discussed alternatives with your neurologist? I had very bad experiences with Sifrol (a dopamine agonist) so I'd avoid that.
The DBS has been brilliant and initially it was possible to reduce the LDopa so I was blissfully free of diskinesias for a while. They returned with a vengeance about 6 months ago and things got worse with about 3 semi-reliable 'on' hours a day. Semi- because a sudden stress could switch me off in a matter of seconds. I now have an apomine infusion pump, and apart from the time it takes to manage needles and syringes (which I've adapted to) it is working pretty well. I've been able to reduce my L-Dopa dose slightly too.
Am I correct in understanding that you take 25 tablets of 25 mg per day? (Ie 600mg L/Dopa per day?) It is a high total, but not excessively so? I was taking 800mg per day until my neuro switched me to Stalevo (containing entacapone which increases l-Dopa absorption by about 25%). This helped for a while and I was able to drop my dose to 600 mg/ day. As things worsened again I was switched to apomine.
I think most people with PD get like you and me eventually, and it symptomatic of advancing PD. I suspect as motivation is lost a lot of us read and appreciate what others are saying, but rarely speak out (as you and others have indeed done). Are you a possible DBS candidate? I agree that the way you have to live your life is just awful. And there's that stress/lack of sleep etc conundrum that makes it all worse. I'm sure that there must be treatment options that can help you. DBS or apomine infusion pump or? My neuro told me if the apomine didn't work he had a couple of other options up his sleeve (I was getting despondent). Thankfully it works a treat.
Physical illness and severe emotional stress have led me down a two step back and one step forward pathway with significant deterioration in the last few months of 2017, including various aspects of autonomic failure. (Plummeting blood pressure being the worst).
I hope I've made sense and not gone round in disconnected circles, as I know I'm won't to do. I've been awake since 3am, but you and others know how that feels!
I do hope that you can get your symptoms better treated. Just as we differ in how the disease is expressed so also we differ in treatment responses. All the best.
PS I'm also a caffeine user, and also feel that it helps my symptoms. I avoid it in the afternoon though. I take mine as coffee which I enjoy but, bizarrely can smell but not really taste
Lsil, thanks for extra info. I believe the levodopa is the portion of the drug that generates the dopamine ultimately; I am getting at least 2400 mg of the levodopa, which is really powerful stuff as you know. When you state 800 mg that you were getting, I think that equated to 8 pills daily (25-100). The second number is the Levodopa dosage. I took a paragraph out of the drug.com site on this: "Administration of dopamine is ineffective in the treatment of Parkinson's disease apparently because it does not cross the blood-brain barrier. However, levodopa, the metabolic precursor of dopamine, does cross the blood-brain barrier, and presumably is converted to dopamine in the brain. This is thought to be the mechanism whereby levodopa relieves symptoms of Parkinson's disease."
I was turned down for DBS twice; they are considering me for the Duopa pump to try and normalize my Ldopa effects. I have instantaneous off conditions like you also and protein really effects my Ldopa effectivity. The pump is new to PD in the U.S. but I am not crazy about having a tube sticking out of my belly; there are other complications as well.
I've done stelevo, entacapone, amandedine, nupro patch, MAO types, multiple types of sleeping aids, vitamins, supplements, etc. I also have epilepsy and multiple types of seizures. The medications for controlling that are nasty.
I hope PD takes it easy on you for awhile so that you can breathe a bit. Sounds like dyskinesia is really causing grief for you. I am not sure which is worse sometimes; the stiff and contracted feeling is terrible but when your body starts to lose control and kicks, swings legs, arms and the head flops, I think that is much worse; and afterward your body gets very sore.
I really enjoyed watching the Olympics live on tv this year; while everyone else except us PD folks had to watch it via tape.
Thanks again dboobar- that really is a massive dose of Levodopa!! Interestingly my drug labels show levodopa/ carbidopa where yours show Carbidopa/ Levodopa which accounts for the difference between 2400 and 800. So I've learned something new; different countries label drugs differently.
It sounds as though you have tried pretty well everything except DBS. I do hope that you find some relief asap.I understand there's a non-invasive (ultrasound?) brain procedure to be available soon.
I don't think I could make a choice about which is worse: full on PD or full on diskinesias. Both involve extreme pain and extreme whole body disablement. I really feel for you.
Yes there are some benefits to being up nearly all night (haha-you obviously haven't lost your sense of humour). All the very best, I'll keep an eye out for your posts.
Dboobar, know what you mean down time, my wife can walk do chores will not stop then down time can not move. I put in wheel chair to move her need to adjust her pillow turn her in bed do everything. Have you researched carbon Levo the drug added to l-dopa in 1976 to stop nausea. It is very toxic and will cause problems in some all people are different. She takes only 5 25/100 tabs a day but i do in between and at night give mucuna to help her. Hang in there.
All you say is true with our experience. I try to give mucus powder I put in capsules so not get to much will cause nausea in between carbon to keep her going. She can not manage the meds motor skills not there. But when crashes can be I move her in wheel chair up to as yesterday 21 hours. So I get no sleep do not know how she takes it. It is so bad because want to do things you like then she upsets me by saying she wants to die. Very heart breaking. We know a Pearson off the drugs that's takes mucus b-6 and amino acids and is doing fine. Over the years the carbon has caused low bp to make things worse. The doc gave us selegiline 4 days ago which reacts with 2 drugs she take but he say benefit out ways bad. She takes midodrine for low bp and it is to react and cause higher bp, but I stop it today due to it did opposite made so low she can not stand up and will not show on my machine. To manage off drugs take mucus you have to have a professional manage it. Supplements alone are $1000 per month then doc cost we can not do. L-dopa causes nausea so in 1976 the added carbon Lego drug to stop it which is toxic. With mucus they give amino acids to control nausea. She has had Parkinson's for 15 years. Will see different neurologist this week to see what he says. Thanks for your reply. Keep in touch.
Dboobar, this is skullgulch, do you have a problem with low blood pressure? My wife does and I was told the carbon does that. She takes 2 meds for low bp but it varies a lot from below 100 to 170s, the doc gave us selegiline to help the carbon last longer with side effect of raising bp interact with other med. She took it and it did opposite and lowered it to pass out stage. It scared us. Been off for 3 days, and when stand I get no reading she dizzy. When sit jump up to 150s it must have damaged something, more stress to deal with. I hope you fine something to help you with on. To my knowledge she has not had.
Hi, when I read one of your other post we are watching the protein and I give her coffee also , you are more like she is so that is why I follow you. It is a very rough road to climb. Thanks for your response.
normally I would ignore recommendation for common things like caffeine, but at the unheard of level of Ldopa you take I bow to your tenacity and first hand knowledge.
I must have something in my stomach before the meds get dumped in. An old pharmacist told me that milk is a protein that does not interfere with the medication getting through the brain barrier. Obviously he was mistaken. I will start immediately to increase my intake of caffeine per your recommendation. Have you noticed any benefit from nicotine or cannabis ?
I take the Ldopa 24/7. My nights consist of waking up or staying up nightly because my body requires the Ldopa; sleeping meds are not effective. So every two hours all night long I wake up and take two 25-100 tabs of Ldopa. Sometimes I fall back asleep for an hour or so until the next dose. So... I don't have stomach issues in the morning because there is no "morning" for me. I will try and send out attachments for the caffeine article and the protein articles if you want to do a deep dive into it.
I am so hooked into taking Ldopa that my body knows within minutes of needing it (almost set a clock to it); we have tried and I continue to try and reduce the doses but it sends me into a state of complete body shutdown.
I smile when reading posts from PD patients that are running half marathons; I wish that I had not gone the heavy medication route early in my disease. I was a very dedicated athlete 7 yrs ago. I am considered stage 5 PD and have very little energy left. It took 13 or so years to get to this point.
I eat as little as possible. Food in general effects the ability for my body to absorb the Ldopa and the protein really is in competition as discussed. I am not a candidate for DBS but the doctors are pushing me toward getting Duopa because of how inconsistent my Ldopa gets from the small intestine thru the BBB to my D2 receptors. Keep in mind that thru-put speed is also a factor; the more consistent that the food goes in and comes out (too slow or too fast are both bad for optimum ldopa retention and usage)
Also, I do snack a bunch with veggies (non protein type) all throughout day and night; and lots of water.
No need to apologize and you’re never too old. I am grateful to have found this site and have learned more from everyone here than from any neurologist. Excellent advice from exercise, diet, supplements , DBS, future treatments, etc. I know it may not be popular to say but I think our faith in God is one aspect that isn’t shared and we may overlook. Since being diagnosed it’s been difficult and overwhelming at times. As a cradle Catholic the one positive that has grown from all of this is my prayer life and a deeper relationship with God. I just encourage anyone of any faith to not neglect that aspect of your journey. My dad a man of deep faith always said remember this is only the journey not your destination. I find comfort in my faith, everyone carries a cross. Some are more visible than others. Healings can be more than just physical there can be healings of our mind, soul, relationships etc. Prayer can change things. Prayer leads to peace which is something I think we all seek. I’m still a work in progress and take Mannitol, vitamin B1, consider surgery etc. This is one aspect or one of the holes in the bucket. I think our relationship with God can be one of the holes too.
I have recently struggling with my faith only because of the following. I have been and continue to be a believer in the power of God and how faith keeps us strong. But at times, I wonder why God does not seem to send small bits of encouragement to keep me energized. If I can't keep my energy and desire to keep pushing thru, I always thought God would help out thru sending me some type of "sign" or "indication" that everything will work out in some way. I am not concerned about death; I just have lost the interest sometimes to keep enduring the physical and mental pain that advanced stage PD has created in me. I know we need to stay on course and have complete faith in God. How do I get thru this stage of my connection with God? Advice?
Some might say that the signs are there, but your just not recognizing them .
Maybe you need to be more watch-full. Difficult when our mind is on our pain and the question, why. Look around , the signs are there. You have just helped others , maybe just keep doing that in different ways. Of course, I dont really know for sure but I think I see them. Did you ever read about Pope John Pauls life with PD.
Yes!! St. John Paul II is amazing , ask for his help and his intercession. I do. He knows our battle first hand . He constantly said and reminded us “Be Not Afraid!!!”
if we continue to pray and put God first in our lives he can and will bring good out of any situation . We must abandon ourselves to his will. That doesn’t mean we don’t see the Dr or look for ways to help ourselves but what he really desires is our trust! He will never impose himself on us we must seek him ! He loves us and desires to be loved in return. There are some authors that I can suggest who have helped me and the amazing thing I am learning about now is contemplation (meditation) from a religious perspective. I am just learning myself but we can gain great internal peace through contemplation as well as a closer union to God. Meditation is found in all religions. It’s something that must be practiced and we can’t force it God alone can help us attain higher levels. But at any level we will gain peace and a closer relationship.
We must remember we are not being punished in any way, God loves us and if he allows suffering it is for a greater purpose. We may be inspiring others to carry their own crosses without even realizing it and may lead souls to God . As far as signs they may come in small things: a call from a friend you hadn’t heard from in a while , someone offering assistance to you, an especially kind nurse when you’re in the hospital, words of encouragement when you need them the most. God often works in simple ways through others. Keep praying even when you don’t feel like it, perseverance is what is necessary. In this life we desire to control everything we must learn to let go and let God take over.
With the input from Skullgulch, Dbooar and ConnieD this has become an informative post. Thank you guys
and to ConnieD , yes you are correct Faith, love, friendship, are extremely important to generate well being ,peace of mind and courage, especially when it comes from God.
Dear Gymbag: I always appreciate your contributions, and this one is outstanding. I am five years into my diagnosis, and it is so helpful to hear from someone who is past the initial enthusiasm and who tells it like it is. I also appreciate the comments of others, and your openness to entertaining them. Thanks to everyone who is posting on this thread!
I would suggest everyone read the poems of JUPITER JANE . Do a search for her here and then go to her home page where all her posts are listed , each one a poem. Her last one was called DYING and it made me angry. I wish she would write another Poem.
hi gymbag I exercise 7 days a week 52weeks a year and I'm 71 I'm proud to tell you I even have abs from doing it my right arm has tennis elbow as well but I keep exercising pain or no pain. I have lost 3 kg as well.so I agree every thing u have said,,keep it up..regards
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Sunday June 19th at 2 PM Eastern I will be facilitating a video call to go over Ceylon Cinnamon to slow down (stop?) PD over on FB
Can PD symptoms remain on one side of the body?
Play the hand that you are dealt. Is there a sane way for PD sufferers to make life choices?
Why don't researchers talk to us?
Trying to stand up straight
