Skip to Accessibility Tools Skip to Content Skip to Footer

Forums


Viewing 20 topics - 1 through 20 (of 62 total)
    • Topic
    • Voices
    • Posts
    • Freshness
  • With pd I feel like Im in the fight of my life! So I fight back as hard as I can every day in every way! Helping others is just one way to help yourself. Body posture is another and many more. Think positive and go far. Always smile until next time. Be good do much!

    Recently, Emma shared about some of fears she feels about her Parkinson's. We wanted to open a space for you to discuss your fears with one another, so you can hear from people that get it. What are your worries about your Parkinson's disease?

    I must tell you that this made me set up and take note. You see my doctor just told me that I have a problem with my level of D vitamin - my blood work was back. So he has put me on a vitamin D supplement to bring my level back up. I already take a vitamin B supplement. My point is "you might want to have this checked out next time you have labs drawn".

    My fear it is going to begin again…I’ve had at least six Neurologist over the years and a couple have cut my meds. I would then start freezing and/or falling until they increased my meds again. My wife is worried I will start freezing/falling because I can not stand up from the kneeled position without help or something to grab onto anymore. I was in the hospital a couple years ago for 2 days and the nurse refused to give me my Carbidopa/Levodopa when I asked for it. The RX had different times so it took me almost 2 weeks to get back to normal. He didn’t look at my past records till he got in the office and made a comment it was a book. I just don’t get a good vibe from him but we’ll see. Below is his assessment. Sorry for the rambling on. "Unusual presentation. Currently there really are no findings on his examination to support diagnosis of Parkinson’s disease. However he is taking medication that could diminish the physical findings, although it is unlikely that he would completely eliminate such findings. Most patients that have had Parkinson’s disease for 16 years would probably have some exam findings, even on medication. With his unusual psychological symptoms, one wonders if he could have instead a multiple system atrophy with some mild extraparametal features and some frontal lobe type cognitive dysfunction. For now, we will leave him on his current medication regimen and will see him in 6 months time. Neurologic examination today is fairly unremarkable except for some mild cognitive impairment. Perhaps neuropsychological testing in the future may shed some light in his cognitive issues. 2. Mild cognitive impairment Alert and oriented to person and location. He gives the correct day of the week. He states over that is September 2019 instead of October. He knows these on the second floor. Current events are normal. On short-term recall he recalls 0 out of 3 objects after 5 minutes. This does not improve with clues. This improved to 2 out of 3 with choices. Does not meet current criteria for diagnosis of dementia at this time. We will continue to monitor his cognitive function."

    Hello all , My dad has been recently diagnosed with Parkinson’s.He is making groaning sounds every day sometimes most of the day. I have asked him is he in pain ? He says no. Any advice would be greatly appreciated. Thank you

    Hi, I dont have Parkinson's but I recently went to docs for vertigo and dizziness. I had a vestibular evaluation done and the specialist said maybe my vertigo is being caused by menapause and shell send info to my doc. I noticed on my papers she wrote 3 issues were addressed. Asymmetrical hearing loss, dizziness and Postural Instability. I've never heard this term so i googled it and all I found was Parkinson's stuff. After reading the Parkinson's symptoms I realise I have many, but the doc never mentioned Parkinson's. Why would she put I have postural instability if I dont have Parkinson's?

    For the past 7 years i have exhaustively read/researched/participated (still in one) all the science, news and trials for this disease which will be cured/slowed/prevented in our lifetime! i am posting this topic to share my knowledge and experience tp anyone who needs help. I hope and pray for continued patience (dealing with this disease) for all of us and let's please all keep looking up. We will prevail!

    Hello All, l wrote quite awhile ago about my husband not wanting to go to specialist in Parkinson's. I finally found a doctor and we went in Sept 2019. He confirmed the diagnosis and put him on medication. He is doing bettet, but wakes up a lot during the night and is very sore in the morning. Any others with the same symptoms?

    Hello - I joined today to offload really in a safe environment and maybe get some tips/pointers. I care for my husband who has had PD for 20yrs, he is 69, we live in the UK. Last summer ‘Forest Gump’ kicked in and because of this his falls escalated (I call it Forest Gump as he can’t stop running). A lot of his falls are down to not being able to risk assess and he thinks he knows best. The start of this year he had a heart attack, was hospitalised locally then moved to a Specialist hospital 2hrs away whilst there he had a cardiac arrest in front of me, stopped breathing, was resuscitated with CPR & electric shocks, spent a week in critical care & 21 days later is allowed to come home. Every day he was in hospital I was with him from 8am to 8pm. exhausted was an understatement and that exhausting feeling stays with me. I do everything in the house & outside (3 acres), we have 2dogs oldest one is 16yrs & had her 3rd stroke last month, I slept with her on the floor for 2wks - slowly slowly she is getting stronger. My husband (when reminded/constantly nagged) uses a frame in the house 80% of the time, the other 20% he is like a pin ball bouncing off the furniture/walls. I am constantly on heightened alert to noises/bumps and run like a mad women fearing he has fallen. Last week we got a mobility scooter which for the first time in ages has allowed him outside & we walk the perimeter with the healthy dog daily. His day he wakes 7am’sh stays in bed till lunchtime watching TV - he does come into the kitchen for his breakfast then returns back to bed. I use to bring his breakfast to him, that’s stopped now as the carpet & his surrounding area had breakfast as well, I was hoping with him having to come to the kitchen for his breakfast he would then stay up for the rest of the day. When he does get up he moves to his chair in another room & continues to watch the TV till bedtime. I feel like a broken record from continuously encouraging......nagging....shouting ‘he needs to exercise’ (1) for his Parkinson’s (2) preventing the next heart attack. We have had a treadmill for 3mths now, he has been on it twice! We rarely go anywhere, he doesn’t want to & if we do he wants to come home not long after arriving. I feel my days are 24/7 caring/washing/cleaning/grass cutting/cooking/shopping - since his heart attack life for me has stopped, it feels like I haven’t taken a breath. I am sooooooo angry as I feel things could be different if he made just a little effort - am I being selfish?

    Anyone out there have any tips for fellow Parkies or caregivers on your personal recommendations to avoid feeling down when the weather changes and the chill and dark of autumn / winter hits our bones? Medically / therapeutically / just for fun?

    Hi everyone new to the forum & Parkinson's. Back in May, my wife & I were on vacation, when she noticed my left hand twitching. I didn’t really notice at all, however I did a little digging and came across 2 possibilities 1. Essential tremor 2. Parkinson's tremor The symptoms I have were pretty much likened to Parkinson's. Tremor in one hand at rest, pill roll. But that’s about it. Since then the tremor has gotten more pronounced, but still only in one hand I went to my doc who put me on a tablet called Propranolol 20mg, primarily to help my blood pressure but also indicated if it was an essential tremor it would help with that too. It didn’t so I was back to square one Meantime one of my customers who is a doctor asked me a few questions with regard the symptoms I was experiencing and has decided to put me on a low dose of Carbidopa-levodopa, because he suspects it could be the early start of Parkinson's I was just hoping for any thoughts on it from you guys Thanks in anticipation Chris

    What tools or devices have you found helpful in managing your PD symptoms? Which have been unsuccessful?

    Many people will be invited to gatherings to celebrate the final weekend of summer this weekend. However, for some people, these gatherings are difficult due to their symptoms. Thus, I was curious if anyone had any strategies or tips that could help people who are experiencing issues while trying to balance socialization with Parkinson's. To all of you, enjoy the Labor Day weekend and here's hoping you avoid the winds and rains if you're in the predicted path of Dorian.

    My fear it is going to begin again...I've had at least six Neurologist over the years think I'm doing to good and a couple have cut my meds. I would then start freezing and/or falling until they increased my meds again. My wife is worried I will start freezing/falling because I can not stand up from the kneeled position without help or something to grab onto anymore. I was in the hospital a couple years ago for 2 days and the nurse refused to give me my Carbidopa/Levodopa when I asked for it. The RX had different times so it took me almost 2 weeks to get back to normal. He didn't look at my past records till he got in the office and made a comment it was a book. I just don't get a good vibe from him but we'll see. Below is his assessment. Sorry for the rambling on. Unusual presentation. Currently there really are no findings on his examination to support diagnosis of Parkinson's disease. However he is taking medication that could diminish the physical findings, although it is unlikely that he would completely eliminate such findings. Most patients that have had Parkinson's disease for 16 years would probably have some exam findings, even on medication. With his unusual psychological symptoms, one wonders if he could have instead a multiple system atrophy with some mild extraparametal features and some frontal lobe type cognitive dysfunction. For now, we will leave him on his current medication regimen and will see him in 6 months time. Neurologic examination today is fairly unremarkable except for some mild cognitive impairment. Perhaps neuropsychological testing in the future may shed some light in his cognitive issues. 2. Mild cognitive impairment Alert and oriented to person and location. He gives the correct day of the week. He states over that is September 2019 instead of October. He knows these on the second floor. Current events are normal. On short-term recall he recalls 0 out of 3 objects after 5 minutes. This does not improve with clues. This improved to 2 out of 3 with choices. Does not meet current criteria for diagnosis of dementia at this time. We will continue to monitor his cognitive function.

    Hello! I work in an adult day center and have watched one of the participants steadily decline over the past 6 months. She hasn't been diagnosed with PD but a lot of her symptoms seem to jive. She has lost 30 pounds in nearly two months, she will suddenly vomit while eating, even though she's been diagnosed with dementia her confusion has rapidly increased. I noticed a tremor in her right hand probably a year ago. She is in a wheelchair for prior medical problems but just a year ago she was also using a walker. Now she has nearly no strength in her legs to get out of the chair and transfer to the toilet. Her legs are stiff and it's a struggle to get her to take three steps. She seems to have her urges mixed up - she needs to use the toilet but nothing happens. Ten minutes later she will have urinated in her briefs. She turns down all food because she's full and has now been vomiting during lunch. She barely eats her lunch as it is. Her left leg and toes have suddenly swelled up yet she only complains of back pain, as she has for years. Her confusion is progressing and she struggles to keep up with conversations. I want to help her family with useful suggestions. Does this sound like PD? Most dementias aren't this rapid. She is declining each day. I don't want to alarm her family but something is going on. Should I suggest PD as a possibility so she can be referred to a neurologist?

    Hi my name is Earline I was diagnosed with PD in April 2019. I would like to know if there is anyone out there with Sls (lupus) also I am having a hard time copeing with both. How do you handle the two.

    My husband was just diagnosed with Parkinson's. He's had balance issues for a couple of years. He uses a walker and a scooter now. At first the doctors said it was Vertigo and Neuropathy only. He was exposed to Agent Orange in Vietnam and is 71 years old. I was wondering if other people who were in the Vietnam war have Parkinson's.

    Hi all, I'm not much of a user of support forums, really not at all to be honest. I'm a relatively younger guy in my early 40's. Considering I have recently been diagnosed with early onset PD after the last 2 years of many specialist referrals, imaging, lab work etc to rule out/figure out what might be causing the issues and symptoms I have been living with and that have been progressively getting worse I thought I might start here. So hello everyone, any thoughts or suggestions on how to move forward in my life in general now?

    My husband is 52 years old and he and I went for a walk the other day. I noticed when he walks he doesn’t move his right arm. His dad has PD and he has seen how much he has deteriorated over the past couple years. It’s very hard for him to see that. I want to talk to him about him seeing a doctor, but I have a feeling he will be in denial and not want to talk about it. It’s just the conversation I’m dreading. Any suggestions?? Thank you.

    Be cautious of brand name stimulators. I have replaced 2 electric cords in 3 years. then I think it plays with the numbers you are set too. it is a respected brand.
Viewing 20 topics - 1 through 20 (of 62 total)