Back to Medications
Haven’t I been here before?
I can’t fight this alone. Medications are now an option.
Several months on a holistic route gave me no improvement in symptoms. So, I bit the bullet and decided to try another Parkinson’s prescription medication.
In October 2017, I started the Neupro (rotigotine) transdermal patch. This bypasses the digestive system (hence, less chance of nausea) because the medicine absorbs through the skin. The 8-mg dosage made me dizzy, so the doctor dropped me to 6 mg. I had no dizziness, but I also had no relief from symptoms. In December 2017, I agreed to try carbidopa-levodopa (the generic version of the “gold” standard therapy for treating PD). Unfortunately, the generic medication plagued me with nausea and dizziness.
In January 2018, I appealed to my insurance company to cover the brand name version of the medication — Sinemet 25 mg/100 mg. The doctor gave me a titration schedule to ease me into the medication. By February 2018, I was using a 6-mg Neupro patch per day and taking two Sinemet tablets three times a day. My “internal tremors” subsided and my second-left toe no longer curled. Unfortunately, this was not an “aha” moment; the change was very subtle.
Almost three years since diagnosis, I’m still putzing around.
My goal is to minimize my reliance on medications, as the long-term effects are not good (there is a risk of dyskinesia from using Sinemet). This is a classic case of a medication having a side effect that is also a symptom of the disease the medication is attempting to alleviate. In March 2018, my doctor agreed that I could cut back the Neupro dosage to 1 mg a day. This medication is cost prohibitive. Even with insurance, I pay over $200 per month.
Applying the patch to a different part of the body daily every 14 days is cumbersome. However, by the time I got to a 1-mg dosage, I had overwhelming fatigue, some depression, and general weakness. By the end of April, I had gone back to 2 mg of Neupro (while continuing with Sinemet). This change seemed to help my fatigue somewhat, but not enough for me to function well.
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In mid-May, my doctor suggested I try a daily 3-mg patch of Neupro. This was very discouraging for me, as I want to take the minimum medications that will allow me to feel good enough to do the exercise I need to do to slow Parkinson’s progression and provide symptom relief. I want to decrease my reliance on prescription medications, not increase them.
What about exercise?
We walk a fine line when it comes to exercise. We need to push our intensity. However, if we get injured and can’t exercise, we lose the benefits of what movement does for our quality of life. Sometimes I wonder if I will exhaust my dopamine allotment for the day if I push myself too hard. Now, when I overdo my exercise, I am usually wasted for the rest of the day. As a former dancer and cyclist, it has always been in my nature to push my limits, and it is a tough habit to break.
To add to my confusion, I’ve read articles about how intense exercise is great for those with Parkinson’s. Exercising three times weekly at high intensity — 80 to 85 percent of maximum heart rate — is not an easy task, especially when plagued with symptoms of apathy, fatigue, and lack of motivation. As a former Spinning instructor, when I heard cycling is great for Parkinson’s patients, I was ecstatic. Piece of cake, I said to myself. However, the recommendation was to pedal at 80 to 90 rpms for 45 minutes, three times per week, a challenge even without Parkinson’s.
Cycling is great for Parkinson’s patients. (Courtesy of Jean Mellano)
In Greek mythology, Sisyphus was condemned to an eternity of rolling a boulder uphill to watch it roll back down again. At times, I feel like a modern-day Sisyphus when I exercise. It feels like a fruitless task that has no ending and is impossible to complete.
Do I still need to take prescription medications?
I am continuing to adjust my medications to find that Holy Grail combination that will hopefully make me feel more like my former self. I will take my supplements, attempt to reduce my stress where possible, maintain a healthy vegan diet, exercise, and meditate. Because I am trying so many things to improve my situation, it will be very difficult to know what is working for me and what is not.
In my next column, I will share with you what I believe has helped me the most.
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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Fran Lo
Hi, Jean, I enjoy your posts. One thing to consider is blood pressure and hydration; I thought I was running out of dopamine during strenuous workouts, but the meds + the PD had dropped my blood pressure. I now take salt tabs + hydrate even more religiously. Without the salt, I just pee a lot. I eat little packaged food so I just wasn't getting any salt. Just something to consider if you don't also have heart disease.
Hi Fran,
Thanks so much for responding and sharing. Normally my BP is low and I am usually dehydrated. Choose your poison, bathroom breaks all the time or dehydration. LOL Hmm, I will have to look into salt tabs. Where do you get them?
Cheryl Hughes
Hi Jean, thanks for sharing. As a caregiver with a blog, I understand how important it is to share one's story. Parkinson's affects each person differently, yet similarly, so much of what you said resonates with our experience. Keep doing what you love as long as you are able.
Thank you so much Cheryl for taking the time to read my story and for your encouragement and support!
Cindie Dean
I'm taking levodopa but it's really hurting my right foot and turning it in and make me walk in real bad it's a struggle to walk with it I don't know i if it's dystonia or what it's a struggle for me to walk and I'm only taking a half a pill 3 times a day I don't know what to do stop it or what? Doctors keep prescribing levodopa makes you sick makes you walk bad I don't know what to do?
cindie,
i am so sorry to hear of your struggles. meds work differently for everyone. have you tried a second opinion? how about foot massage?
Patti O'Neill
It is so good to not feel like I'm the only one with these symptoms. I have had curling toes and turning foot on rytary. My neurologist has increased dose and tried to give me other meds, but none helped. I now have neupro patch, but have not tried it yet. I hesitate starting a new med because of side effects, I'm busy and driving every day. Side effects that might cause dizziness or hallucinations while driving would be a disaster. I'm home 4 days next week and will try the patch. I feel like my doctor thinks I'm a difficult patient because I don't always agree with her. She wants me to have DBS, but I told her that I felt that was extreme for treatment of a hand tremor. The dystonia is secondary to med. I told her at 73 the chance of death was increased. Her comment was " after 70 the chance of death increases for any surgery". I told her that was not a reason to have surgery when my PD, which does no effect my life dramatically to warrant the risk.
gemma
Hi Jean, I enjoyed reading your posting and can relate to your experiences with meds, exercise, etc. Have you considered cannibus? After tying Sinemet with no appreciable results and Xadago, which I stopped as I have macular degeneration, I'm considering it. Also, have you tried Pedaling with Parkinsons? You wear a heart monitor and only have brief periods of intense exercise. The program is highly rated. I tried it but prefer my treadmill. And at the gym I use the elliptical. Aside from the meds, which don't always work and can have serious side effects, exercise is good "medicine" for PD.
Thank you Gemma for your reply. I have not tried marijuana; I do not have tremors and I believe that is something that may be helped by marijuana. I have never tried Pedaling for Parkinson's. I am a former cyclist and Spinning instructor and used to train with a HR monitor. The best exercise for me I believe is the Rock Steady Boxing. It never ceases to amaze me how some therapies (meds included) work well for some and not at all for others.
Dr. John G. Hill
Tried the transdermal patches (Rotigotine) a couple of years ago. It worked for me except for one thing - it turned out I was allergic to the adhesive which held the patches to the skin so had to give it away.
The patches left huge welts on my skin which took literally months before they finally went away so it was back to the good old Sinemet 100/25 during the day as well as Sinemet 200/50 CR at night, which I still take at night as well as Clonazapam to stop the dreaming, and Pramipexole (Ramipex in NZ) for RLS which, of all the symptoms I had of PD, I despised the most. As I've gotten older (I'm now 70) I've given up worrying about becoming addicted to Clonazapam. I don't drive anymore and I no longer have a pilot licence after 53 years of flying.
During the day I use Sinemet 100/25 as required taking care not to over do it thus avoiding Dyskinesia.
I still have the odd 'off' day but generally I feel I've got it under control. I still fly with a safety pilot at the local aero club and this allows me to indulge in my lifetime pastime - being with aircraft and getting involved.
Hi Dr. Hill, I could have sworn I responded to your post. It must have been in my mind LOL. I am on Neupro patch which I believe is rotigtine. That is great you have seemed to have found a formula that works for you and that allows you to still be involved with your passion :-)
Wendy Helen Goode
back to medications I have been taking Mirapexin2,1mg x day,sinemet plus25/100mg 3xday and Xadago 100mg 1x day. Was doing well,fitness excellent until I fell onto my knees( left leg in plaster toes to top of thigh) in September 2017. I have not been able to recover my fitness or exercise as per usual as below the knees mylegs and feet are affected, I have lost all energy by midday.Weight gain 20 kilos Help!
Wendy, I am so sorry to hear of your struggles. I relate to the fatigue you are feeling. My fatigue is unlike any other fatigue I have felt in my life and it just cant be fixed with sleep. By noon I am wasted..It seems so cruel that you were making some progress in battling PD and then your fall has set you back. Hang in there, you sound like a fighter. I hope you can get back to your fitness routine soon.
Robert Allen
I would love to exercise more but my problem is that as soon as I start to walk, even something so simple as walking the dog, both my right knee and my lower back start to ache, and the pain grows worse with the more I do. I have consulted physicians about the knee and back, but in each case they want to do surgery which I don't feel would be feasible at my age of 89 and with Parkinson's Disease. Also, when doing some exercise such as walking around a super market I become very fatigued quickly. Does anyone have any suggestions?
Hi Robert, I am so sorry to hear of your struggles. It is quite a conundrum for us PD sufferers. We are told to exercise more for our condition, yet in many cases the symptoms of the disease make it much more difficult to do so. I know in my case, the fatigue is overwhelming and apathy and lack of motivation plague me and make it so much harder for me to workout. Also, our symptoms in some cases are the same as those that come with aging. As I get older (I am 64 now), when strange things happen, do I attribute to normal aging process or PD? I am not a health professional so I cannot advise you, but I know what has worked for me. Acceptance that I have this disease rather than fighting it as well as listening to my body; both have helped me a lot in dealing with the cards I have been dealt. Best of luck to you Robert.
Richard G Duncan
PD sufferers go to the gym to improve and preserve their ‘health’. Health is not simply the absence of disease: but rather the ability to deal optimally, both physically and mentally, with the environment – whatever that happens to be. This essay focuses exclusively on the physical aspects of health.
Many gym-goers expect to attain this goal by developing their cardiovascular fitness. They spend hours on the stationary bikes, treadmills and other ‘aerobic’ machines.
This essay focuses on strength training because it is particularly important for the elderly (and PD patients) to maintain their strength and balance capability. Weight training strengthens bones, tendons, and ligaments, off-setting the effects of osteoporosis, which so frequently afflicts the elderly – particularly women. However, it is not uncommon to see men too with curvature of the thoracic and cervical spine.
While cardiovascular fitness relies on endurance and interval training, strength training relies primarily on intensity. All too often one sees gym-users (both men and women) on the weight machines effortlessly lifting light weights through numerous repetitions – essentially wasting their gym time. It has been demonstrated in study after study, that the growth and strengthening of muscle fibers, tendons, and ligaments, is prompted by the body’s failure to accomplish the lifting task – a principle derived from evolutionary first principles – “you won’t get stronger if you are doing what you can do already!”
But what if you could triple the benefits of weight training? Halving the amount of time spent in the gym; lowering the risk of injury, and drastically reducing the number of repetitions. Sounds too good to be true? Well, the “Slow-Burn” Workout delivers on its promises! – That is, if you can stick with the program!
Conventional strength training requires several hours a week and frequently causes injury. The “Slow-Burn” technique, in which weights are raised and lowered with extreme slowness (about 10 seconds up and 10 seconds down), is proven to have great advantages over conventional weight training:
1) It’s safer. Because the weight used is less (this writer finds a reduction of about 20% in weight normally lifted is all he can manage), and the number of repetitions is reduced to 4-6, slow lifting reduces injury to ligaments, tendons, and joints. This means that even the elderly can do it safely.
2) It’s more effective. Conventional lifters tend to ‘snatch’ the weights and use momentum to assist the repetition, using primarily ‘fast twitch’ muscle fibers. Without the use of momentum, the slow twitch muscle fibers are fully engaged (as opposed to mainly fast-twitch with conventional lifting).
3) It’s more efficient. Complete a gym workout in 30 minutes twice a week – compared with 3 or more hours a week for conventional workouts.
How to do the “Slow-Burn” Workout:
Complete a set of 4-6 repetitions of each exercise in 60-90 seconds. If you exercise on 10 machines, you can complete your workout in about 15-30 minutes. And two workouts/week will be all you can manage (I can assure you!). I have Parkinson's and it works for me!
Any questions? Email – [email protected]
Richard, thank you for your in-depth advice. I agree with you that strength training is very important for overall fitness. This is regardless if one has PD or not. How it is done, as you described is great advice. One of the challenges I have is that I am constantly fatigued and apathetic. Plus, as a person with PD, I must work on my flexibility, and cardiovascular fitness as well. Add to that balance exercises and fine motor skills exercises and my head starts spinning LOL. What works for one PD patient may not work for others, however, through experimentation and patience, I believe we all have the ability to find what works for us. What you have shared is very valuable to have in our tool kit. Thank you for sharing.
Jesus
Hi, my week programe is from two to four days per week (hour and a half each day), if you stimulate your neurons by studying, reading or going to the gym, could it be negative in any way for a degenerative disease as PD?
Hi Jesus,
Thank you for your post. I am not a health professional so I cannot offer advice. However, I find for myself, movement is very important for slowing disease progression and providing some sympton relief. My challenge is trying to find the right balance in intensity, duration and number of times per week I do my workouts.
Judy in Mississippi
You mentioned posting what is helping you the most. I haven't been able to find it. Can you please send me a link? I am searching for help with internal tremors (in my legs and knees), which you mentioned you had in one of your posts. I take 3 carbidopa/levodopa tablets a day and apply an 8 mg neupro patch. The first two doses of c/l work really well, then the third dose is a complete failure. No relief whatsoever. I also wonder if 8 mg is too strong and could be contributing to the problem.
Hi Judy, thanks for your comment. Here is the link: http://parkinsonsnewstoday.com/2018/08/07/parkinsons-disease-battle-plan-includes-lifestyle-changes-medication/
I found the sinemet helped most with my internal tremors. i have been putzing around with my meds to this day, now i am on 3mg neupro, (2) 25/100 sinemet 2x/day. As i said in my article, there are many factors I rely on for relief. I believe exercise is the most important and i take the drugs so I am able to exercise. Have you discussed your meds concerns with your doctor? I do believe doses/meds must be changed over time due to disease progression.
John Feng
Hi Jean,
Thanks for your post and not sure if you are still flowing it.
I’m now 57 year old with PD diagnosed 5 years back with left hand tremor. I now take C/L 25-100 mg one tab four times a day, but its ‘on’ time of each tab taking only lasted one hour or so, then ‘off’ time coming. The bothering me most is sleeping time with leg shaking on bed and worrying or not tolerable to any touching by my wife if it’s ‘off’ time.
Any suggestion on adding a C/L CR tab for night time or NEU patch of 1- 3mg for me?
Thanks a lot in advance.
John Feng
Hi John, I am not a health professional, so I cannot recommend any changes to meds. Have you discussed with your doctor? We are all different in our symptoms and how we react to meds. I am on c/l 25/100 1.5 tabs 4x per day plus Nepro 3mg patch, but I still feel terrible. Have tried adding Nourianz and change from C/L to Rytary. When I added Nourianz and changed from c/l to rytary, i had to revert back to my original C/L since I got very bad akathisia. unfortunately, there is no magic formula, it is all trial and error and what works for one may not work for all. good luck