I’ve had Parkinson’s for 9 years. The only medication I take is Selegeline 5mg twice a day and Tylenol with codeine for chronic pain, 60 mg three times a day. I was feeling very well in August from intermittent fasting and daily exercise that I decided to go to England to visit my family. I found the whole trip extremely stressful not helped by fall on the plane going there. I was mowed down by one of the cabin crew walking backwards with the cart. There was a lot of stress at home too. My family were upset seeing how This disease has affected me and I was upset to see how my mother is struggling with disability and how unhappy she is. She kept saying how she wish she was dead. I also struggled with not being able to help her as I have been able to do in the past. I was in the UK for a month. The return journey was a rough 15 hours. Since my return back to the USA I have been struggling with chronic fatigue. I can sleep up to 16 hours a day. Initially I put it down to jet lag, but I don’t normally suffer jet lag. It is interfering with my day to day life because I’m so tired all the time. Sleeping does not refresh me. I have read the chronic fatigue is a symptom of Parkinson’s and they can give stimulants to correct it. I would prefer not to take stimulants.
I fear this is a progression of the disease and I’m concerned that this will not improve.
I need to add that I take mannitol, roughly a tablespoon a day, 500mg of B1 once or twice a day, celery seed extract half a teaspoon daily.
Any suggestions or comments welcomed.
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Shaky-hand
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Thank you for your reply. I used to drink a lot of coffee before the onset of PD but like so many other people I lost the taste for it. Recently I just started to enjoy the odd cup but I do find it makes my tremor worse.
I think you demonstrate what happens to a person who shuns the usual medications, particularly dopamine replacement.
You obviously have a strong desire not to take levadopa medication which could help on many levels including movement and your chronic pain. I dont know if it would help with energy levels but it may. I know I am lethargic when my meds wear off. I dont understand why you would take other meds but not levadopa. I wish you would reconsider.
I have just read some of your earlier posts and see you had side effects and felt you did not tolerate conventional meds. All i can say is these drugs are strong, they have to be to tackle this condition. Every drug you have to start slow and low and have a commitment to continuing. Unfortunately you cannot get domperidone in the USA. It is used in UK for nausea. Very useful in the short term while your body adjusts. I reacted to sinemet and found the ER version is gentler and works much better for me.
I don’t shun the usual medications but I have found that I am very sensitive to medications and the side effects I experienced the worst than the symptoms of PD. I found with Sinemet that I experience such bad nausea that I cannot function for at least an hour after taking it. I get the nausea about 30 minutes after taking it. From the very first dose I also experienced dyskinesia of the left side of my body, Which is my unaffected side. I know normally dyskinesia does not begin until about five or six years of taking dopamine medication.
I am fortunate enough that my symptoms are Mild enough That I am able to function fairly well without the medications I have previously failed. There may come a time when the symptoms outweigh The side effects of the medication but at the moment it is the opposite way around.
I’m also fortunate to find that my symptoms have decreased over the years with use of complementary measures.
I belong to a very active support group with about 50 members with PD. When I look at the other members who have had PD for nine years I see that I am not doing any worse and maybe even a little better than those taking the usual medication and those whom have had DBS.
They call PD the snowflake disease because everyone is so different. Fortunately for me my main problem has been right arm tremor with activity with some bradykinesia and mild rigidity. My gait is unaffected as is my balance. I have not lost a sense of smell, I do not suffer constipation and I normally sleep well at least eight hours a night and do not act out my dreams. I do suffer from anxiety and depression But feel that’s more from grief with loss of my previous healthy and active life.
Immediate release Sinemet seems to get prescribed by default instead of the controlled release version, Sinemet CR. The immediate release version results in an initial flood of levodopa which is prone to causing dyskinesia, and nausea as well, for that matter. The controlled-release version provides a much more even flow of levodopa and therefore is less likely to result in these adverse effects. There is also a generic version known as carbidopa/levodopa ER.
9 years with no meds is impressive, but maybe time to try some dopamine medication. There are different options and I’m sure you’ll find one that makes you feel way better.
How awful on the plane though😟.
My suggestion would be to consult a neurologist and do as they suggest.
Whether or not the medication is worth the side effects is a shifting analysis that will change over time. Its all very well for a dx+2y patient to say CL is not worth the nausea, but whem you are a decade in and shaking like a sh_tting dog and can barely move, maybe a little bit of nausea is tolerable?
I see my movement disorder specialist November 21, an appointment made in March!
My tremor is mild to moderate and at zero when resting. When I get irritated by it I can just stop what I’m doing and mentally relax and the tremor stops. I did not experience tremor relief with the use of Dopamine medications.
I move somewhat slower than previously but still able to do everything I need to do. I walk 50 minutes a day for exercise.
I also suffered from pain from arthritis years ago but I go to acupuncture once a week and don't suffer from pain any more. Highly recommend it. Also, try to find a "ROCK STEADY BOXING" class. I have been going for a year and you can't believe how much improvement you will get from it. Good luck.
Thank you for your reply. I did acupuncture off and on for three years. I did find it helped decrease the pain But the pain relief was temporary. I have a spondylolisthesis with severe Stenosis. Unfortunately I cannot have surgery because I have severe osteoporosis. I do find walking helps the pain.
A great number of our support group Participate in and highly recommend the Rock Steady boxing. I’m seriously considering about going but somewhat concerned about my back. I would also need to get there by bus as parking at the Local center is a nightmare. A minor logistic problem.
I'd echo Hikoi, you should be looking into the panoply of medications out there. Mucuna pruriens might hold some value for you, and I think you want to read through this whole site for ideas.
Also, very important, is how long and how much you REALLY have been taking tylenol, it can eventually harm your liver.
Each person's course of PD is rather unique so you have to undertake a serious project of learning to improve your situation...and by "improve" I also mean not get worse, it is likely it will take some activism effort on your part since you are some years in.
Yes, drink coffee. Many benefits fairly well documented in several areas of effect.
Things I would do, cannot counsel you to do the same, it's on you to figure out what is appropriate for you. Yes, start taking the experiences of high dose B1 HCL SERIOUSLY. Up the dose sooner, rather than too slowly, some people have found they need that up to 4 g per day for 3-4-5 months to see effect, move your dose up to the point you seem to develop the agitation or skin irritation/flushing side effects and then back off to the dose at which they disappear. Then stay with it for several months. Make sure the B1 is the HCL variety. If you do see effect, accept that you may need it the rest of your life and become religious about it.
Disability is about life, it is part of living. Going without medication is nice and macho, but you can thus waste opportunity you cannot get back, because that is also the best preventive window, or slowing window, because even though you may not be feeling a lot of negative features of the disease yet, it yet still does progress and the earlier time is the time to do the preventive effects if they can be got, because until they find a better cure the disease is lifelong and progressive, even if you don't notice it so much early, for the majority it doesn't go away and progresses in one direction only, so it will gradually overtake you and it is better to do what you can so that perhaps it doesn't have to get worse. Don't waste any more of that window. Think of it as you are midway down a very long hill, maybe not so steep yet but look ahead and see that you are on a long hill, moving down, it's only down, and maybe gentle slope or nearly flat now but it is still a long long hill. Respect that, and don't close your eyes.
Don't be phased if OTHER people, your mother, etc., are upset about YOUR disability, let it roll off you or ask her to stop carrying on because doing so can hurt you. Ask her whether having you alive with this disability is preferable to having you dead, then counsel her to enjoy you while you are here and let the rest go. Tell her nobody is promised tomorrow anyway, but that there are things you can do and perhaps they will help. If you do, both of you will feel better.
Sorry to see about that plane though. Walking backwards is never a good idea except if it is during PT or with a spotter buddy. Flight attendants should be trained for that, bet that was a good learning experience for him(her).
Sinemet made me too tired to function. Then the doc added amantadine. That solved the tiredness problem. But then I quit the sinemet and just use amantadine now.
My husband has had Parkinson's for 9 years and he takes a lot of medication. He can't walk without his Sinemet. I am shocked that you only take one medication.
Sorry to hear that your husband is unable to walk without the use of Sinemet. Parkinsons is such an individual person’s disease they consider it a Syndrome rather than disease in itself. My difficulties lie in my arms, the right greater than the left, but fortunately my gait has not been affected.
I have failed and use of medications as I did not find them effective and the side effects were worse than the symptoms.
It sounds to me as though you have done a brilliant job staying well. Having a close family member with PD I think that avoiding / delaying levdopa for as long as possible is a good strategy.
Your trip sounds really challenging, and not surprising that it has knocked you. I wonder if you could benefit from deepening your sleep quality. Please look at the sleep tips I have on the website of start-up, Zeez Sleep. I think they are good foo sleep generally, including for people with PD. Magnesium, which often helps sleep, is often particularly useful for people with PD. My start-up hase developed a sleep device, designed to deepen sleep, which has been trialled in a case series study with people with PD by Professor Camille Carroll of Plymouth University, Lead for PD in the SW of England. I can send you the abstract if you like. One person with PD recorded a c lip. PD is tough, and it certainly possible to improve sleep quality and decrease fatigue. Good Luck. youtube.com/watch?v=Qe9JtwZ...
I did try Mucuna Pruriens for six months but did not experience any positive effect.
My primary care doctor is keeping close monitoring of my liver function, I am happy to say.
I have been actively researching information regarding PD for the past nine years and attending professional seminars. I feel there are things I can do now that a year ago I was having difficulty with. I believe my progression has been really strong, thank God.
I found that taking greater than 1 mg of B1 per day made my symptoms worse. I’ve been taking B1 about 18 months now and have credited it with a decrease in my symptoms.
By the way it wasn’t me walking backwards on the plane. I was standing in the aisle ready to climb into my seat when the air hostess, she was walking backwards, bumped into me.
I would suggest it’s not safe for anyone to walk backwards, especially if you cannot see what’s behind you.
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