My Question to Kathrynne Holden from Ask a Parkinson Dietician
A Free Service Sponsored by the National Parkinson Foundation
I am a 58 year old post-menopausal woman who has experienced significant weight gain (15-20 pounds) since DBS-STN for PD in May 2005. I am also concerned about my increasing cholesterol level.
I was diagnosed with PD 12 years ago.
The explanation that I've always heard is that DBS-STN changes one's metabolism and if DBS-STN is successful, generally one shakes less. I had a significant tremor prior to DBS which has almost completely subsided. I never had dyskinesia pre-DBS but developed some after DBS, and the dyskinesia is now almost non-existent through excellent programming.
I continue with the same vegetarian diet as I have for the past 25 years. Also, I walk 2x/week, do yoga 2x/week and dance 2x/week. Before my PD diagnosis, I enjoyed running and biking but currently I'm afraid to run or bike.
I am delighted with the overall benefits of DBS-STN. Is there anything you would suggest to combat the weight gain and rising cholesterol level?
Thanks for your commitment to PD patients, Kate Kelsall
Kathrynne Holden’s Response:
You are both proactive and well-informed, and this is of immeasurable benefit in combating PD. Your exercise program is very well-thought-out – walking benefits both muscles and bones, yoga counteracts some of the effect of PD upon the muscles and joints, and dance is proving repeatedly to improve PD symptoms as well as health.
Regarding weight gain, it’s likely that you now have less or no ‘off time,’ and you state your tremor is controlled. Both of these contribute to energy expenditure. Post-menopause, there is a decreased production of estrogen, which in most women is accompanied by fat gain.
If you are certain your daily calorie intake has not changed, then these, along with the decreased production of estrogen that accompanies menopause, are likely the contributing factors. However, if you are using an agonist, such as Mirapex or Requip, these can cause edema (fluid retention in the tissues), which is a very frequent cause of weight gain in PD. Your doctor can determine whether edema is present. If so, I would use salt very moderately, and include potassium-rich foods daily. The DASH diet is an excellent choice both for its natural diuretic properties and because it is rich in the foods of most benefit in PD, and can easily work for vegetarians.
If weight gain is due to increased fat, then, if it is possible I would try to add an extra walk or dancing weekly to increase energy expenditure. It may also be helpful to break up meals into 4-6 small meals daily; the body is more apt to store calories as fat from three large meals than several small ones.
Estrogen also helps to control serum cholesterol, and again, it’s likely that the post-menopausal condition is having an effect, despite a vegetarian diet. However, I would ask your doctor to review total cholesterol, HDL, LDL, triglycerides, C-reactive protein, and serum homocysteine. If your ratio of HDL to total cholesterol is high, the cholesterol may not be a concern, especially if triglycerides and CRP are normal. I mention homocysteine, in case you use levodopa. Long-time users of levodopa often develop elevated levels of homocysteine, and if you use levodopa, I strongly recommend you ask your doctor to establish a baseline. Homocysteine is associated with stroke and heart attack, depression, and dementia.
Regarding the increased cholesterol, if you are not already doing so, I would switch to extra-virgin olive oil both for cooking and for dipping bread with meals; it is a fine source of anti-inflammatory. Include a couple of tablespoons of mixed raw nuts daily – almonds and walnuts particularly, also Brazil nuts, filberts, and pecans. Nuts are a rich source of natural vitamin E as well as protective fatty acids.
Finally, does your diet allow you include fish? It is the finest source of omega-3 fatty acids, which are superb at helping to raise HDL and lower LDL and triglycerides. Fatty fish, and fish oil capsules, are both excellent. If you do not use any animal products, then I recommend use of flax seed oil; though not as effective, it is still a good product.
I hope this is helpful; write back and let me know how you are doing.
“Your battery is almost dead,” uttered Jenna, the Medtronic’s rep. She tested my Kinetra pulse generator at the deep brain stimulation (DBS) support group last Friday, July 11. Jenna discovered that the charge in my battery was perilously low, despite the fact that my surgery for Parkinson’s (PD) was a mere three years ago.
I anticipated the battery lasting four to five years, not three. In fact, my friend, Valerie’s battery, although the older Soletra model, has lasted for more than six years. Valerie, like the Energizer Bunny, keeps going and going and going. I’m jealous.
The complications to having an expiring battery were that my husband, Tom, and I had scheduled and paid for an Alaskan trip to start in ten days and that the neurosurgeon who normally performs the battery replacements surgeries was on vacation.
It’s not like I can stop off at the Battery Store and pick up a spare battery or pull out the jumper cables in the trunk of my car and charge it up. But I understand rechargeable batteries are on the DBS horizon.
I’ve heard stories of fellow DBSers whose batteries had totally expired. They end up in a sort of PD hell until the batteries are replaced. The PD symptoms return with a vengeance. An active DBSer can turn into a bed-ridden one in a matter of minutes. Someone described it as being in a big black hole and unable to get out.
I was overwhelmed by the kindness and can-do attitude of staff of Medtronic and University of Colorado Hospital who orchestrated the referral and surgery in the record-breaking time of four days.
While in my brain fog awaiting for surgery on Tuesday, I observed two look-alike pre-op nurses who described themselves as twins with different mothers. When the second nurse came on duty, she said, "Oh, you're THE DANCER" as if I was the only dancer in the world. I vaguely recall meeting the nurses in our volunteer work with other DBS patients and their families. However, I'm quite sure that I never talked to her about dancing. Perhaps she overheard a conversation that I had with a patient. Who knows?
Recovering at home, I’m receiving emails about taking it easy in preparation for our trip to Alaska.
Rest and relaxation have never been my strong suit.
Advice from the Energizer Bunny: If your doctor doesn’t normally do so, it is important to have the charge in your IPG battery periodically monitored, particularly the longer it has been implanted. Although the typical lifespan of the battery is three to five years, it varies from individual to individual depending upon your particular settings (including, amplitude, pulse width and frequency, as well as the number of active contacts utilized). And, if at all possible, try to anticipate the waning of your battery so that you have sufficient time to schedule replacement surgery. None of us wants to find ourselves in the predicament of having a dead battery, much less a dead battery far from home and appropriate medical treatment.
I have Parkinson's Disease. It is not contagious or hereditary. No one knows what causes it, but some of the dopamine cells in the brain begin to die at an accelerated rate. Everyone slowly loses some dopamine cells as they grow older.
If the cells suddenly begin to die at a faster rate, Parkinson's Disease develops. It is a slowly progressive disease usually occurring as people get older. Medicine can help. I'll take newer, stronger kinds over the years. Some make me sick and take lots of adjustments. Stick with me. I have good days and bad days.
Emotions: Sometimes I cry and appear to be upset and you think you have done something to hurt my feelings. Probably not. It is the Parkinson's. Keep talking to me. Ignore the tears. I'll be OK in a few minutes.
Tremors: You are expecting me to shake. Maybe I do, maybe I don't. Medicine today takes care of the tremors. If my hands, feet, or head are shaky, ignore it. I'll sit on my hands or put them in my pockets. Treat me as you always have. What's a little shakiness between friends?
My Face: You think you don't entertain me anymore because I'm not grinning or laughing. If I appear to stare at you, or have a wooden expression, that's the Parkinson's, I hear you. I have the same intelligence; it just isn't easy to show facial expressions. If swallowing, I may drool. This bothers me, so I will mop it up.
Stiffness: We are ready to go somewhere and I get up. I can hardly move. Maybe my medicine is wearing off. The stiffness or rigidity is part of Parkinson's. Let me take my time. Keep talking.
Exercise: I need to walk each day. Two to three miles is good. Walk with me. Company makes walking fun. It may be a slow walk, but I'll get there. Remind me if I slump or stoop. I don't always know I'm doing this. My stretching, bending and exercises must be done everyday. Help me with them if you can.
My Voice: As my deeper tones disappear, you'll notice my voice is getting higher and wispy. That's the Parkinson's I know you can talk louder, faster and finish my sentences for me. I don't care for that. Let me talk, get my thoughts together and speak for myself. I'm still there. My mind's okay. Since I'm slower in movement, my thoughts are slower too. I want to be part of the conversation. Let me speak.
Sleeplessness: I may complain that I can't sleep. If I wander around in the middle of the night, that's Parkinson's. It has nothing to do with what I ate or how early I went to bed. I may nap during the day. Let me sleep when I can. I can't always control when I'm tired or feel like sleeping. Be patient, my friends. I need you. I'm the same person; I've just slowed down.
It's not easy to talk about Parkinson's, but I'll try if you really want to know. I need my friends. I want to continue to be part of life.
I never used to be one who cried. During my pre-Parkinson’s days when I was a Certified Public Accountant, I never cried for 15 years. Of course as an accountant, I seldom laughed or expressed much of any emotion.
The “gift” of Parkinson’s opened up my tear ducts. Now…
I cry at weddings.
I cry at funerals.
I cry when I talk about having Parkinson’s Disease, and I cry when “I don’t want to talk about it.”
I cry when waiting for approval of my disability benefits, and I cry when the benefits are approved.
I cry when I do amazing things such as dance with the Rockyettes and climb the vertical ladders at Mesa Verde National Park, and I cry when I think of the future without these activities.
I cry when people are kind and cry when people are cruel.
Perhaps I have turned into a Cry Baby, but that’s okay because I am emotionally healthy now. Opening up the flood gates has allowed the full expression of ALL my emotions. Laugher through tears is my favorite, like sunshine after a hard rain.
Drinking camomile tea could help to treat sufferers of Alzheimer's and Parkinson's. Writing in the Guardian, Dr Tom Smith said that camomile tea (as well as green peppers and celery) contain luteolin, which is a substance that has been found to reduce inflammatory reactions in the brain.