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It seems that a family member or a caregiver should go with you to the doctor so that everyone can be working together. Also, try the Parkinson's Foundation at parkinsons.org.
Good luck with your situation. Your symptoms must be frustrating to work with. Take care, Carol
I agree and understand about PD. I Have a good Neuro. Doctor. He will sit and talk to me with an y questions. I trust him! But caregiver never listen to me when I come home and tell them. They want me to go see (better doctors) that can make sure I really have PD. They won't accept any things else. I had 3 strokes and it hit the frontal part of my brain that controls movement. The doctor has ran MRI's and two EEG's on me and the second EEG showed I have only 40% left of brain function.left. And because I walk and think fairly good that I don't have PD. Should I take them to the next appt. with my doctor. I fear them will go off on him because they are widely appended and speak up when they should keep out.
JS: Sadly, it isn't my Dad, but my once big, husky, hard working elk hunting, fishing spouse who loves me dearly and would do the same thing for me if needed? That is why the guilt is hard for me to cope with.
Thanks for your support, I just wanted to clarify who he was? It is imprtant to me.
My husband who has previously been diagnosed with Essential tremor in his mid 40's, and finally had DBS surgery in 2001. This was great for a few years, but the stimulators had to be recalibrated upwards regularly as his tremors kept coming back worse.
Ultimately, the doctors suggested a Thalamotomy for his out of control left hand, but the surgery resulted in a progressive partial paralysis all the way down his left side, including throat/swallowing.
His doctors(many) now feel he has PD, and since the Thalamotomy in 2006, he has constantly declined classically with PD symptoms and no RX typically prescribed offer any relief.
Now, he is getting a feeding tube inserted this month, due to progressively poor swallowing issues, and of course his bowels hardly work anymore, requiring drastic Mag. Citrate usage weekly, along with Miralax, stool soteners, fiber pills, senna laxatives, prune juice, etc. Stomach pain requires morphine for comfort.
He shuffles and drags his feet when he walks, and needs an electric lift chair to get up and down. He sleeps a lot, is depressed of course, tremors now in hands/arms is terrible, losing weight despite Ensure nutrition suppplements. Now I have to bathe, shave, brush his teeth, feed him, etc.
I'm his sole caregiver, but it is getting harder for me as his constant needs are wearing me down mentally? We have no family near us, and basically I am on my own in a small coastal town. Selling the house and moving is not reasonable presently and I promised him several years ago I wouldn't put him in a "home" if he became real ill? Now, I starting to feel overwhelmed and guilty over the negative feelings I am having about all this and resentment that our lives are basically over at this time in most respects? Going to the grocery store or errands are my "big outings", which I can do because we got him a emergency medical alarm he can use if he fell or whatever while I was out for a short time.
I just realized I am wandering and had no intention of telling you all this when I started typing, but it just spewed forth it seems? I'm not sure now, what I was trying to say to anyone? Maybe I'm losing it? LOL
I'm a huge believer in vitamins and herbs, but when people are on certain medications, and blood thinners are among them, you need to be very careful. This could be a dangerous combination. You could ask your pharmacist to run it through their computer program to see if there's an interaction. Carol
Also, my Dad has a pacemaker and he takes blood thinner medication and he is reluctant to try any medication or herbs, such as CoQ10. Is this CoQ10 something you recommend? Would it interfere with the pacemaker or blood thinners?
My husband (70) was recently diagnosed with PD by two neurologists. I read with great interest rscarbo's (6/26/08) comments re olfactory problems possibly being related to PD. My husband constantly complains of a bad metallic taste as he draws a breath and then a heaviness going down into his chest, making it difficult to breathe.
Side effects of some meds also cause metallic taste, but he has addressed that problem with help of md's. But bad taste and heavy breathing persist.
i work with a elderly lady that all of a sudden her right arm and leg started shaking terrible and she cannot stand it.she first started feeling depressed and feeling lonely we have taken her too see drs.and nothing finally i told my boss that it could be that she have developed parkinson,could this be possible?
annegrace/heberts i really can relate to the both of you. my father has had pd for 15 years now and it seems like he is really suffering to me. i try not to let him see me cry but its very difficult to watch a stong hard working able man reduce to pracitically a baby! he cant do anything for himself, and lately hes been sounding as if hes giving up!
annegrace i feel your emotions i am going throught the same thing with my mom who has pd and i ask the same questions when is enough med enough already. there is no quality of life anymore and it is straining my dads health.
Long term what exactly is the progression of Parkinson's? My mom started falling and losing her balance about 7 years ago. She had the shuffling and the difficulty getting up. We went to several doctors, had CT scans,MRI's and they found nothing. No on even suggested Parkinson's because she had no tremors. We found a Neurologist about 2 months ago and he is trying to diagnose PD but is having difficulty. He started her on Sintiment (SP?) Mom spent 3 years in assisted living getting PT, OT and lots of help and she continued to decline. Early this year they said they could no longer safely care for her so I had to move her to a Nursing Home. She cannot use her legs, has mostly lost use of her arms, can barely write, has difficulty talking and swallowing, is totally incontinent, has a lot of constipation and is in a lot of pain. She is also depressed which has been complicated by me dad's death in May. I don't know what to expect. I feel like I need to spend as much time with her as I can but I am wearing out. How long does this go on. I love my mom so much but she is wanting it all to just end. I don't know what to tell her. I know I need to have this conversation with her doctor but I guess I have just been afraid to ask the hard questions. Is there any chance she will just slip away peacefully or will this be an even longer drawn out agony for her?
I have heard that olfactory problems can be a symptom of PD. My father passed as a result of complications of PD. I am now 65, and have been experiencing a sensation affecting my sense of smell. As I draw breath in, or as moving air from an air conditioner, fan, or even a direct breeze, enters my nostrils, the sensation of smell is like smelling car exhaust. have there been any reports of this kind?
my husband has Parkinson's Syndrome which consists of symptoms in abcense of disease. However I don't know how the Neuologist determines that he has the syndrome and not the disease. He has no tremors however he has every other classic symptom. I just discovered that there is also a Parkinson's Dementia. I was unaware of this. I found a wonderful Neurologist that specializes in Parkinson's Dementia so I'm hoping that this will help. Anyone else have some experience with the Dementia? I myself finally pursuaded him to let me help with the bill paying as he was running up credit cards and his writing was illegible.
My dad, in his mid 70's, has recently been diagnosed with PD. The problem we're having is that his symptoms came on all at once, within a weeks time, and very aggressively. He "started" with extreme shaking to the point of falling on the ground and excessive crying. His primary doctor has been very vague in his diagnosis and of his medical team only 2 of the 5 confirm the PD. His days go from extremely normal to extremely awful. He stays in bed all day and night, eats little and is VERY depressed. My mom is his primary caregiver and she deals with health issues herself. My concern is that my dad may be misdiagnosed as most of the information I find on PD describes a "gradual" progression of symptoms. His condidtion began as if he were in stage 4 or 5 of PD according to the "Stages of PD" article I've read on this site. Please help with some insight as to our confusion in his diagnosis. I know we may be in "denial" however, his symptoms are certainly real...we just need to understand why he would begin in such an advanced stage of PD. It's so difficult for my mom to handle the ups and downs of his days, she never knows what to expect or how to handle him at the onset of his day.
My Mother has PD and is under the care of a Dr. My Brother insist she use different supplement Deprenyl citrate being one of them. Is this harmful? helpful? Thank you, rk
I was recently diagnosed with what may be Parkinsons and I am wondering where I can find information about European approaches and treatments of this condition using stem cells. I realize we probably don't have any active programs here in this country, thank you very much, so I am willing to seek treatment elsewhere if it is possible. Shakey63
Hobie51: We hear that question a lot, so we posed it to our Parkinson's expert. And the answer was: There is no general guideline. The disease progresses differently in everyone. To read Dr. Videnovic's answer, click here:
I understand there is no precise guidelines for the time between stages in Parkinson's, however I was wondering if there is a general guideline. Thank You.
Try the Elder Care Locator. You can speak to an information specialist by calling 1-800-677-1116 or visiting www.eldercare.gov/Eldercare/Public/Home.asp
Glad to hear you've got the support of a therapist. If your father refuses to see a neurologist, having the opinion/assessment of an elder care manager would at least re-enforce that objective third party opinion I mentioned. Good luck!
Oftentimes, our parents refuse to listen to the good advice from those who love them most and have their best interests in mind. This is a case when an objective, third party opinion might be what your father needs. Seeing a neurologist is best. But if he won't go, perhaps a visit to his family doctor whose medical advice he trusts, will convince him. (Prior to your father's appointment, you can have a private discussion with his doctor, to inform him of your suspicions and challenges.)
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I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
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24 Comments
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What is Parkinson's Disease?
Good luck with your situation. Your symptoms must be frustrating to work with.
Take care,
Carol
Sadly, it isn't my Dad, but my once big, husky, hard working elk hunting, fishing spouse who loves me dearly and would do the same thing for me if needed? That is why the guilt is hard for me to cope with.
Thanks for your support, I just wanted to clarify who he was? It is imprtant to me.
Thanks again!
Ultimately, the doctors suggested a Thalamotomy for his out of control left hand, but the surgery resulted in a progressive partial paralysis all the way down his left side, including throat/swallowing.
His doctors(many) now feel he has PD, and since the Thalamotomy in 2006, he has constantly declined classically with PD symptoms and no RX typically prescribed offer any relief.
Now, he is getting a feeding tube inserted this month, due to progressively poor swallowing issues, and of course his bowels hardly work anymore, requiring drastic Mag. Citrate usage weekly, along with Miralax, stool soteners, fiber pills, senna laxatives, prune juice, etc. Stomach pain requires morphine for comfort.
He shuffles and drags his feet when he walks, and needs an electric lift chair to get up and down. He sleeps a lot, is depressed of course, tremors now in hands/arms is terrible, losing weight despite Ensure nutrition suppplements.
Now I have to bathe, shave, brush his teeth, feed him, etc.
I'm his sole caregiver, but it is getting harder for me as his constant needs are wearing me down mentally? We have no family near us, and basically I am on my own in a small coastal town. Selling the house and moving is not reasonable presently and I promised him several years ago I wouldn't put him in a "home" if he became real ill? Now, I starting to feel overwhelmed and guilty over the negative feelings I am having about all this and resentment that our lives are basically over at this time in most respects? Going to the grocery store or errands are my "big outings", which I can do because we got him a emergency medical alarm he can use if he fell or whatever while I was out for a short time.
I just realized I am wandering and had no intention of telling you all this when I started typing, but it just spewed forth it seems? I'm not sure now, what I was trying to say to anyone? Maybe I'm losing it? LOL
Life ain't fair folks!
Carol
Also, my Dad has a pacemaker and he takes blood thinner medication and he is reluctant to try any medication or herbs, such as CoQ10. Is this CoQ10 something you recommend? Would it interfere with the pacemaker or blood thinners?
Thank you,
Viviana
Side effects of some meds also cause metallic taste, but he has addressed that problem with help of md's. But bad taste and heavy breathing persist.
Does anyone have similar experience?
lhvon
i really can relate to the both of you. my father has had pd for 15 years now and it seems like he is really suffering to me. i try not to let him see me cry but its very difficult to watch a stong hard working able man reduce to pracitically a baby! he cant do anything for himself, and lately hes been sounding as if hes giving up!
i feel your emotions i am going throught the same thing with my mom who has pd
and i ask the same questions when is enough med enough already. there is no quality of life anymore and it is straining my dads health.
We found a Neurologist about 2 months ago and he is trying to diagnose PD but is having difficulty. He started her on Sintiment (SP?) Mom spent 3 years in assisted living getting PT, OT and lots of help and she continued to decline. Early this year they said they could no longer safely care for her so I had to move her to a Nursing Home. She cannot use her legs, has mostly lost use of her arms, can barely write, has difficulty talking and swallowing, is totally incontinent, has a lot of constipation and is in a lot of pain. She is also depressed which has been complicated by me dad's death in May.
I don't know what to expect. I feel like I need to spend as much time with her as I can but I am wearing out. How long does this go on. I love my mom so much but she is wanting it all to just end. I don't know what to tell her. I know I need to have this conversation with her doctor but I guess I have just been afraid to ask the hard questions. Is there any chance she will just slip away peacefully or will this be an even longer drawn out agony for her?
Thank you,
rk
Shakey63
https://spisloshub.com/Featured-Stories/115495/The-Stages-of-Parkinson-s-Disease.htm
https://spisloshub.com/Answers/123302/My-father-64-was-diagnosed-with-Parkinson-s-Disease-How-long-can-a-person-live-after-diagnosis-.htm
Ron
This link goes to the National Assoc. of Geriatric Care Managers. I think this would help you.
Good luck.
1-800-677-1116 or visiting www.eldercare.gov/Eldercare/Public/Home.asp