Parkinson's disease

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When you were first diagnosed did you find yourself embarrassed in public around family and friends?

When you were first diagnosed did you find yourself embarrassed in public around family and friends?

Since i found out i have parkinsons i found myself isolating myself from family and friends. Its hard being with a group of my friends most just turning forty like myself. I see them watching me when we're trying to have dinner and my hand is shaking so bad i can barely get the food to my mouth. I don't want their pity. We go to the movies and we have to sit in special seats because i can't climb the stairs and… read more

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A MyParkinsonsTeam Member said:

Adapting is a process along with acceptance. It is a new life style.

posted 12 days ago
7 medium

What can I do about nerve pain and cramps in my legs and feet?

What can I do about nerve pain and cramps in my legs and feet?

What can I do about the nerve pain and cramps in my legs and feet?
I've been trying to exercise and walk more often. I can walk, but after about 6 to ten minutes I begin to get stiff on my left side and I can feel the sciatica causing pain through my left leg and side. After a while my left foot will start to drag a bit. But if I go too long, My fibromyalgia begins to flare up as well. and then I will start hurting all over.
Yet when I try to discuss… read more

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A MyParkinsonsTeam Member said:

Brian has experienced cramping of the feet and also to this day has painful hands and arms and legs and feet he is on Deranol and Vitamin B6 for this… read more

posted 15 days ago
5 medium

Has anyone been reading up on the two new drug therapies for PD?

Has anyone been reading up on the two new drug therapies for PD?

I had mentioned the drug before which was a one pill slow release Amantadine which is called Gocovri, which is being used to treat dyskinesia It has been approved by the FDA. It is for those who experience side effects from amantadine now have another option. The second drug is Exenatide, a medication used to manage diabetes. Primary outcome was an improvement in motor symptoms and may slow the progression of PD. All information was taken from the… read more

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A MyParkinsonsTeam Member said:

Had a neurologist give a talk on Gocovri at our monthly PD support group. Sounded great, so we googled it to find out the cost, as he never mentioned… read more

posted 15 days ago
7 medium

End stage of Parkinson help

End stage of Parkinson help

My mum is in the end stage of Parkinsons. The doctors have now taken her off most of the medication she was on as they say that because she has had Parkinsons for almost 22 years the medications do not work as they should. I could do with talking to others that have had or know someone that has had Parkinsons for this length of time. I'm so worried at the moment as last week mum was put on another drug to help keep her calm its called Trazadone but it has made her even worse she has… read more

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A MyParkinsonsTeam Member said:

I have taken Trazadone to sleep for 8 years. I take 100 mg per pill. You might check how much your mother was given per pill. This is a rather mild drug… read more

posted about 1 month ago
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Do you think your family and friends and even your neurologist understand Parkinson's disease and how it affects you as a person?

Do you think your family and friends and even your neurologist understand Parkinson's disease and how it affects you as a person?

This disease is the worst to comprehend as a patient and as a caregiver. I stay isolated and alone because people are afraid of me. When I tremor and my arms are flailing out of control, they think I am being aggressive. When my facial expression is frozen and I can't turn my head and have trouble with speech, people think I am ignoring them. People are constantly telling me not to be… read more

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A MyParkinsonsTeam Member said:

Thank you for the hugs & the useful!

posted about 1 month ago
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What actually happend to you, in detail when your meds wear off?

What actually happend to you, in detail when your meds wear off?

I start to feel down and in need of something. I get very insecure and then I remind myself, meds are off. So, then I start labored breathing, very weak, especially in my legs. They freeze up and get very hard to move them to get to my bed. I could fall very fast at this time. The hard tremor starts up, I lay in that bed and my body seizes up. Arms won't move, I don't breath steady. I start sweating and am very hot. I am scared, depressed that I have… read more

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A MyParkinsonsTeam Member said:

I also experience this off time but not as severely as you do. Perhaps your doctor can revise the schedule for taking your meds. Mine did and it helped.… read more

posted 3 months ago
9 medium

Focused Ultrasound Treatment for Parkinson's - trials in thalamotomy (tremor dominate) and pallidotomy (dyskinesia dominate)

Focused Ultrasound Treatment for Parkinson's - trials in thalamotomy (tremor dominate) and pallidotomy (dyskinesia dominate)

Focused ultrasound is a completely non-invasive way to perform the lesioning procedure described above without exposing the patient to potentially harmful ionizing radiation. Using this treatment modality in conjunction with image guidance, the physician directs a focused beam of acoustic energy through the patient’s scalp, skull, and brain to thermally coagulate a small area of the brain,… read more

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A MyParkinsonsTeam Member said:

Kimberly was the first to receive the treatment at the University of Maryland and has become a friend of mine. She is the one biking in the video.

posted almost 3 years ago
9 medium

Do we have any Welders out there that have PD diagnosis ?

Do we have any Welders out there that have PD diagnosis ?

I was reading out a study today regarding how they found a connection between the "metallic vaporization" that occurs when someone is welding various metal items together.. Then it hit me, of how such a task, could release a variety of toxic and heavy metals ! And with your face and nose being so close to the welding site, small wonder... Any comments from welders here ??

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A MyParkinsonsTeam Member said:

I was a machinist for 14-years and was right next to the welding shop. Prior to that, I worked in an underground lead/zinc mine.

posted almost 3 years ago
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Scientific Support for the Long-Term Safety of Levodopa Use.... What does your Neurologist & you believe ?

Scientific Support for the Long-Term Safety of Levodopa Use.... What does your Neurologist & you believe ?

Despite proven effectiveness and wide use of levodopa, usually prescribed as Sinemet (carbidopa-levodopa), to manage movement symptoms in PD, doubts have lingered over the drug’s long-term safety. Research published Oct 11, 2011 in the journal Neurology, scientists conclude that larger cumulative doses of levodopa, taken for years or decades, do not harm critical brain cells in people with Parkinson… read more

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A MyParkinsonsTeam Member said:

Thank you Allan for your post. I have a problem taking Carbidopa/Levodopa- it does not seem to affect my motor symptoms plus the fact that I was… read more

posted over 2 years ago
1 medium

Are you experiencing sexual compulsions/inappropriateness related to your PD?

Are you experiencing sexual compulsions/inappropriateness related to your PD?

A few nights ago my dad's care facility called me. The aide on the other end of the phone was giggling at first, and then said "well it's really not funny," and proceeded to explain to me that my dad had had another panic attack (they are getting more frequent, almost every few days now), so they gave him half a xanax (he refuses a whole one because it makes him loopy for 2 days). When his aide was helping him back into bed, she… read more

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A MyParkinsonsTeam Member said:

Leigh, good girl. Stay on top of your physical symptoms and try to do anything that gets your mind off the family issues. And with your work and school… read more

posted over 2 years ago
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