Posted 09 September 2013 - 04:32 PM
Posted 11 September 2013 - 06:23 PM
If you care to provide more data, I might be able to give a fuller response:
- when diagnosed with PD
- what type of anemia (iron deficiency anemia, pernicious anemia, megaloblastic anemia)
- the names of all medications used (both PD, and other medications, including over-the-counter medications, vitamins, herbal or other supplements)
- any other diagnosed conditions (such as elevated blood pressure, food allergies, diabetes, high cholesterol, etc.)
- have there been any instances of dehydration?
- any particular complaints or concerns such as nausea, edema, weight changes, constipation, sadness, etc.
It is important to see a neurologist who is a movement disorders specialist; please note whether that is the case.
I will try to help if I can. I look forward to hearing from you.
Posted 12 September 2013 - 02:50 AM
Posted 13 September 2013 - 06:04 PM
You have been doing a very good job of caring for your father and trying to anticipate his needs. I will respond as best I can:
- He requires more protein to bring his albumin back up, and since he can’t swallow well, I would suggest pureeing any meat, poultry or fish that he likes and will accept. If he can manage scrambled eggs, that would be a good choice also. As he will no longer be taking Sinemet, protein should not be a problem. He needs at least ½ gram protein per pound of body weight per day, and probably more, depending upon the degree of weight loss and albumin level. I would try to divide that amount about equally among morning, midday, and evening meals plus three snacks at mid-morning, midafternoon, and bedtime. Eating smaller meals may help with his hypotension, as there is less blood flow and energy needed to digest small amounts of food than a full meal.
- Be certain he drinks plenty of fluids – keeping his blood volume up is important in helping to control hypotension. If his doctor agrees, it often helps to add salt to his food, to help keep blood volume normalized.
- Have you tried TED stockings? They have helped many people control hypotension. If he has not tried them, I would discuss this with his doctor.
- Additionally, he needs extra calories, and adding the coconut oil is a good idea. You could consider fruit smoothies made with half-and-half (half milk, half cream) as snacks between meals, and you can add coconut oil to them as well. The milk will provide extra protein, and the cream and coconut oil extra calories to help with weight gain.
- Regarding anemia, if it is iron-deficiency anemia, his doctor should recommend an appropriate iron supplement. I would ask which type of anemia it is, so that proper nutrition can be provided.
- Sometimes drooling can be controlled by use of a fenugreek-thyme combination, found in most health food stores. It would be worth trying for a month to see if there is a difference.
- Clonazepam should be used with caution in elderly persons because of its many side effects – weight loss and increased salivation are among these, along with hypotension, confusion and tremor. If his hallucinations are presenting a serious concern, then such side effects are a necessary tradeoff; but I would discuss this with the prescribing physician. Would it be possible to further reduce his dose?
- Aricept also has side effects which may be contributing to his concerns – possible adverse effects include dizziness, tremor, gait problems, and hypotension.
I hope this information will be useful to you, but if not, please write again, I will help if I can. I will keep your father in my thoughts and prayers.
Posted 13 September 2013 - 11:21 PM
Posted 15 September 2013 - 04:47 PM
The two types of anemia you mention are not due to iron deficiency, but rather deficiency of vitamin B12 and/or folate. He may lack a substance called intrinsic factor, that allows him to absorb B12, or he may not be getting enough B12 or folate in his diet. Long term B12 deficiency can lead to a type of dementia that resembles Alzheimer’s disease, so it is important to be certain he has been tested for B12 deficiency, as well as folate deficiency. Also, if the test for B12 deficiency was the Schilling test, you can ask for a test for ‘methylmalonic acid,’ which is more accurate in the elderly.
Regarding mucus, many people believe that one should avoid milk when having a cold, because it will increase mucus secretion. However, no tests have ever borne this out. If you have observed greater mucus with use of milk, then I would rely on your own observations. But if not, then I would choose milk over Glucerna, as having a superior nutrient profile.
Mucus is a problem that is not at all uncommon among folks with PD. Here are some suggestions that may help:
1) Alkalol: Many conditions can lead to a buildup of sticky mucous that's difficult to swallow. If so, it might be helpful to try swishing the mouth (or gargling) with a mouthwash called Alkalol.
Alkalol is a mucus solvent. It is commonly used as a mouthwash, nasal spray, and gargle, to cut mucus. People with sleep apnea, singers with throat irritation, and others use Alkalol, but it's fine as a daily mouthwash also. Alkalol is available at most U.S. drugstores; if not, the pharmacist can order it:
The Alkalol Company
Taunton, Massachusetts 02780-0952
2) Pineapples and papaya contain digestive enzymes that help break down mucus. Sipping plain, unsugared pineapple juice, or eating pureed papaya, may help relieve mucus buildup.
3) The fenugreek and thyme combination that I mentioned may also help with excess mucus as well as drooling. It can be obtained in capsule form at many health food stores.
Regarding eggs, many people with dysphagia can eat softly-scrambled eggs; but if you feel this isn’t possible, consider scrambling the eggs, then pureeing in a blender with a bit of warmed, liquid coconut oil.
You and your mother are to be congratulated on excellent caring of your father. My very best to you both as well as your father, and let me know if you have other questions.
Posted 24 September 2013 - 01:02 AM
Great suggestions. I started giving my dad the items you mentioned, and I will discuss it with his doctor on Thursday. I hope it helps, because the constant drooling and mucus is really distressing to him. I am giving him the fenugreek-thyme once a day though. I wanted to start him out slowly. The bottle says to give him two capsules (we put it in apple sauce for him) three times a day. Do you have any recommendations regarding dosing?
Posted 24 September 2013 - 06:39 PM
I think you're doing exactly the right thing, in introducing the new herb combination slowly. If you don't note any adverse effect (people can be allergic to just about anything), then after a few days increase to twice a day. After 4 - 5 days, increase to 3 times daily. If he is accepting this well, then you can increase to 2 capsules 3 times daily. I do hope it will help; write back and let us all know how he is doing.
Posted 04 October 2013 - 05:09 PM
Hi, well I took my dad to his neurologist/internist last week, and he told me to stop giving him the fenugreek-thyme, because even though it may help him with his drooling, it suppresses the appetite and since he has anemia that's obviously not a good idea. so I am back to square one. I got back his B-12 and folic acid results yesterday and they were within range, so I'm not sure what's going on. He has been off his Sinemet now for one week. He has been alert, lucid and his head is not drooping as much, and he is still able to walk with assistance, so we are just monitoring him now. He is still drooling excessively though. Per his doctor's recommendation, I am taking him to see a lung specialist on the 17th, and based on what he says, I may have no choice but to put him on the glycopyrrolate to help him with his excess saliva and drooling. As I said before, I am concerned about the drug's many side effects, namely hallucinations. I'm also concerned about the drug drying out his mouth. Due to the fact that all of his teeth are infected, that is problematic. I read somewhere that the Sinemet can result in excess saliva as well, so I am hoping that once the Sinemet is completely out of his system, he will not be drooling as much. I spoke to a dietician today, who knows nothing about Parkinson's, but she recommended that I give him bene-fiber to increase his fiber intake. Fortunately, he has regular bowel movements, but a couple of months ago, his x-rays showed that he had impacted feces.
Posted 06 October 2013 - 06:48 PM
If his B12 and folate levels are normal, then one would suspect an iron deficiency anemia, and I would ask that ferritin levels be checked as well as the usual iron markers.
Regarding the fenugreek-thyme supplement, if you have not noticed any change in his appetite, then it is likely not a concern. In fact, among Moroccan women who wish to gain weight, fenegreek is considered helpful. One small study on obese persons did demonstrate satiety with use of 8 grams of fenugreek daily; but the supplements should not contain that much -- two capsules of Now Foods, Fenugreek & Thyme contains only 700 mg of fenugreek, which is less than one gram. I too am concerned about the possible effects of glycopyrrolate. It must be used with caution in the elderly, because they are more prone to suffer from its side effects. Please see:
Benefiber should be a good choice for fiber intake, as it can be dissolved in many pureed foods, which would be helpful for your father.
Let us know how he is doing; I will keep him in my thoughts and prayers.
Posted 11 October 2013 - 02:07 AM
Hi, after reading your comments, I am thinking about giving my dad the fenugreek-thyme supplement again. However, upon further research I read that it can have an adverse reaction with blood thinners, and we are considering giving my dad a baby aspirin a day. His doctor thinks an aspirin would be good, but my dad is scheduled to see a lung specialist next week, so I wanted to discuss it with him too before we move forward. I would rather try this natural supplement than the glycopyrrolate if it does not suppress his appetite and interact with the aspirin. Do you have any data or input on this? We need to do something soon, because he is just drooling profusely and he has so much phlegm in his throat. The bottle I have is 1,000 mg, and it says that two capsules of the supplement should be taken three times a day. I was only giving my dad one a day.
Posted 12 October 2013 - 07:03 PM
I can't say definitely, as each individual can have different reactions to any drug or supplement. Thyme is thought by some to be an appetite stimulant, as well as an expectorant (helpful with mucus) although evidence is weak. However, thyme has been found to contain a substantial amount of salicylates; whether a baby aspirin in addition to the fenugreek-thyme would constitute excessive salicylates, I cannot say. Fenugreek may also promote blood thinning/increased risk of bleeding.
Regarding appetite suppression by fenugreek-thyme, this can be noted by gradually increasing the amount, and noting any change in appetite. Regarding its use along with aspirin -- there is insufficient evidence to say whether this is safe. You might try giving it until such time as his doctor determines that the aspirin is necessary. If you find that the mucus is lessened, then you could discuss its continuation with his doctor.
I wish I could provide more definite answers; but your father's age, diagnoses, and medications form a complex picture. I tend to be concerned with multiple medications in older adults, as the liver and kidneys do not metabolize drugs as readily as with younger people. But I surely would not gainsay your father's doctors, who have his complete medical record at hand. Let us know how your father is doing, I care very much.
Posted 25 October 2013 - 05:44 PM
Thanks again for your advice and concern for my beloved father. I don't know what to do at this point. I am meeting with his doctor again on Monday. I took him to a lung specialist last week, and he recommended that we give him atrovent with a nebulizer to help him break up the secretions in his throat. Please take a look at the last inquiry I sent to Dr. Okun regarding this matter. I will keep you posted.
Posted 26 October 2013 - 05:56 PM
I am very sorry to hear from your post to Dr Okun that he must have all remaining teeth extracted, I know you are concerned about the trauma for him. The possibility of swallowing bacteria that could lead to lung infection, however, is very serious, and should take precedence. Also, we can hope that it might improve his excess salivation as well. Is he doing well on the pureed foods, and hopefully getting enough protein?
Regarding the mucuna, NOW foods is generally regarded as a reputable supplement supplier; I don't have any personal knowledge of their products, but you might consider trying their "Dopa Mucuna" which contains a standardized extract of mucuna pruriens.
Regarding Atrovent, it should be far safer for him than the glycopyrrolate. If he does have problems with it, you could fall back on the fenugreek-thyme supplement (if he is not taking the baby aspirin) and see if that improves the drooling.
Meantime, I am encouraged to hear that since weaning off the Sinemet he is more alert, and especially that his blood pressure has stabilized somewhat. This should be a big improvement in his ability to consume food without the severe hypotension. Please continue to let us know how he is doing. It isn't always possible to help, but we surely will if we can. Your father is blessed indeed to have such a caring family.
Posted 29 October 2013 - 05:06 PM
Hi, please check my post to Dr. Okun for an update on my dad's condition. I took him to his neurologist yesterday, and he decided to test his ferritin levels like you suggested, and he told me that I can try the mucuna pruriens. I ordered it, but I am not sure of the brand name that the health food store ordered. I am just wondering if this supplement will be effective without the carbidopa. I also re-visited the fenugreek-thyme supplement with his doc, but he said he prefers my dad use a baby aspirin daily instead, so I will wait until after his dental extract to start that. I am still trying to convince my family about the need for him to extract his teeth although I have serious concerns about taking out all of his remaining teeth one time. In the interim, we are giving him pineapple and papaya juice to help thin the mucus, and Tussin when necessary (can't find liquid Mucinex here). I also bought some Sage tea for him last night and the Alkalol so I am desperately hoping these products give him some relief. Additionally, I plan to start given him treatments with atrovent via a nebulizer soon per his doctor's recommendation, but I am so concern about doing anything that will dry out his mouth, and make the infection in his mouth worse. It's all so stressful.
Posted 31 October 2013 - 06:24 PM
Regarding the mucuna, it could cause nausea in some people, but generally herbal preparations are much milder than drugs and less prone to major side effects. Start out slowly as you have done before in other circumstances and watch to see how he responds.
As to the Clonidine, perhaps it won't be necessary; if so, watch for dry mouth, drowsiness, dizziness, and loss of appetite. But I think you're being prudent in holding off while continuing to monitor.
Definitely you are doing the right thing in not using any blood thinners till after he has the dental extractions completed and healed. After that, you can assess his condition and symptoms and make further decisions. I too am concerned about removing all remaining teeth at one time. However, perhaps the doctor's thinking is that a single experience would be preferable to having several sessions of anesthetics and extraction, each of which has some degree of trauma, blood loss, confusion, and recovery, particularly difficult at an advanced age. Also, no doubt he is concerned about the infection traveling to the lungs. Lung infections are extremely dangerous in older adults.
By and large, I think it is a good idea to work with the milder treatments for mucus -- pineapple & papaya, the sage tea, Alkalol -- whenever possible, as we have more difficulty with medication side effects the older we get.
Regarding dry mouth, should that occur with the Atrovent and/or Clonidine-- have you tried the Biotene products? There are several, and they do help keep the mouth moistened. Rinses, sprays, and gels, for both day and nighttime use.
I know you are stressed, and understandably so; there are multiple decisions to be made, none of them easy or simple. I do hope you are remembering to give yourself a pat on the back -- many pats, in fact -- for your efforts. You have done terrific work for your father, and he is benefiting from this even though it sometimes may not seem like it. I will keep your father and you in my thoughts and prayers.
Also tagged with one or more of these keywords: weight loss, nutrition, elderly, puree diet
Unmoderated Discussion →
Young Onset Forum →
Unmoderated Discussion →
Young Onset Forum →
Unmoderated Discussion →
Young Onset Forum →
Medical Questions →
Ask about Nutrition →
Unmoderated Discussion →
Young Onset Forum →
0 user(s) are reading this topic
0 members, 0 guests, 0 anonymous users