fakhiuddin ahmed
Forum Replies Created
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I agree that this may be treatable. I would suggest Psychiatrist or psychologist consultation for the patient and you should take a 2 week holiday. What would happen if you fall sick….
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My wife has difficulty in drinking water, she barely sips water to take her meds. She is unable to cooperate and many doctors have complained about her over years. Short of i.v hydration, or perhaps psychological intervention–and she has refused to see one- I do not see a solution. Like many patients it is not possible to distinguish between symptoms caused by P.D. and those caused by her inability to cooperate. Please help with ideas or experience.
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It will be my wife’s decision, but I will take the boosters and vaccines and she has followed my example this year. In the past she did not take the flu vaccine but since COVID’s appearance, she has been taking the flu vaccines as well–likely because these vaccines are brought to our door in our senior living place. Neither of us had flu or covid.
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My wife, with PD, and I live in a senior care facility that provides meals as well living accommodations. Her major symptoms are fatigue, slurred speech, periodic cognitive problems. We have help coming 3 times a week for 4 hours to help her bathing, getting dressed and taking her to her classes. So far this has worked to some degree. I had difficulty in getting help and got her through our daughter.
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My wife was diagnosed 25 yrs ago, when she was 55yrs old, but became symptomatic about 5 yrs ago. DBS took care of tremors and dyskinesia, but her symptoms, of sleepiness, cognition changes, slurred speech, fatigue, depression, kyphosis, remain problematic. Like so many, I have to consider that these are due to disease progression and or drugs related When she is in her ‘on’ period her speech is normal but it was never loud ‘on’ or ‘off’ periods.
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Has he had a CT with contrast or MRI of head done recently? My wife feels very hot, actually sweating when the ambient temps are comfortable for the rest of us. this was ascribed to dialatation of skin vessels under control of sympathetic/para sympathetic nervous system which goes awry in P.D.Could this be happening to the intracranial vessels? pure speculation until discussed with neurologist.
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My wife’s speech is often difficult and sometimes, impossible for me to understand,, despite speech therapy. This may be due to my hearing aid which improves some sounds and not others.
My wife does not drink enough liquids despite my pleas(her urine is dark) and she is often confused. I wonder if there is evidence that dehydration is the cause of her cognitive problems
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While I do not have any experience with this device, I cannot see the rationale for it. However, I just read that B12 injections help. I wonder if B12 levels were low in patients who were helped and many other questions.
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So many people have had successes with so many types of treatments that it is tempting to deny any cause and effect. My wife has had leg cramps at various times of the day,but mostly at night for the last thirty years. She lost her sense of smell decades ago, was diagnosed with PD25 yrs ago, but became disabled 8 yrs ago. She has tried many medications but is helped most by warm compresses and hydration. Very hard to draw conclusions but then degenerative diseases that are slowly progressive are hard to comprehend.
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My wife does. She is sweating when the room temp is 65 degrees. Her docs do not think she is crazy since it is well known that the sympathetic nervous system that governs relaxation or constriction of small blood vessels in response to ambient temperatures are also affected by PD. We just adjust our clothing.
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Is there a description of advanced PD? Do they become immobile, incontinent, unable to feed themselves or by meds and other treatments, few if any patients ever reach such a state? Does cocaine or cannabis help?
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My wife used to like singing and hear her own singing recorded on CDs, but now, rarely does she sing or put the CD s on. Often, she just sits not wanting to read or watch TV. She seems to require me to interact with her and not do my work.
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My wife with PD suffers from depression, at times severe. The covid has separated her from friends. She feels weak and spends greater time in bed and it is difficult to determine if her fatigue is from depression or PD or likely both. Her exertion tolerance has progressively decreased, which makes me want to know how close to the end she is. I want to know from caregivers the symptoms near the end to avoid pushing her to try harder which will make her feel guilty that she is not trying hard.
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My wife has been taking entacapone for a year, starting with half a pill to one whole one. She has many symptoms that are hard to ascribe to a single factor, as happens with most PD patients, but none of the symptoms have persisted even as she continues to take entacapone.
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not knowing(will look up literature) I cancel whatever activity we were planning and let her rest.don’t know the experience of marijuana use but doubt if she will try that. If my energy is spent, I improvise.
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I would not advise snow clearing for elderly folks. One fall resulting in a hip fracture may be extremely dangerous depending upon your age and general fitness. Many places have free services for elderly or disabled people in N.Y. maybe yours does too. sorry for this pessimistic opinion.
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Please encourage folks to send follow up research projects they have come across. Curing PD in mouse models is exciting but any follow up data on how long did the response lasted, did any morph into neoplastic lesions?
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I want to have access to the studies underway, including stem cell transplantation, inducement of patients own stem cells to grow faster, invivo or exvivo, exchange of csf etc.
Thanks
f.ahmed md
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My wife.
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I totally agree with Fabio. some of my patients with lethal diseases have sold their houses to go to Bahamas, Mexico to try out therapies that have shown to be failures in U.S.
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Thanks Lyn, I will try that especially since she likes grapes, oranges, coca nut water and others. Thank you very much.
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This is a very good letter and gives me hope to travel with my 84 yo wife who has PD for 20+ years(symptomatic for the last 5 years). We have flown to Toronto from NY but were afraid to fly to Tucson or San Francisco. This letter encourages me to make those longer trips. I wonder if non-stop travel will be better than taking 1 or 2 stops.
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Speech problems seem to disappear when my wife is in the “on” period and sometimes, speech symptoms are the most apparent symptom of the “off” period.
I have also noticed that depression and other cognitive problems occur independently in the off periods. With my neurologist’s acquiescence, I will try, levodopa/carbidopa ODT and see if it helps.