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  • Caregiving While Traveling

    As a caregiver or care partner, traveling with someone with Parkinson’s can be difficult. Have tips or advice for other caregivers while planning a vacation, or even just going to the store? Share with us below!

    Parkinson and Ataxia

    Im Brazilian and i’m looking to understand about Parkinsonism and Ataxia. And Saw this video. Is that a goog video?

    Parkinson attack"

    I have a question for the community. I was diagnosed with PD in 2015 after at least a decade of “soft” symptoms, including the sensation of an internal (not visible) fast, generalized tremor. I used to attribute it to my thyroid hormone, but that weird sensation of being a “human tuning fork” was always transient. The symptoms that brought me to diagnosis were L sided stiffness and bradykinesia. Over the past ten months or so, i have had approximately eight episodes of what I call a Parkinson’s “attack”. These episodes happen exclusively at bedtime and are characterized by significant sensation of internal vibration, some restlessness, and worsening of Parkinson’s stiffness. These episodes are unnerving, to say the least. As a nurse practitioner (now retired due to PD), I entertained the possibility that the episodes were panic attacks. However, the episodes fail to meet panic attack diagnostic criteria. I take SInemet 25/100 1.5 tabs 3x/day and gabapentin 300mg at hs for “restless legs” sensation in my L arm and leg. I have read that everyone’s experience with PD is quite unique/individualized. I was just wondering if anyone else has had episodes like this. Thank you!

    Exercise and Wellness

    Along with exercise, complementary therapies like yoga and mindfulness meditation can help improve overall quality of life. What kind of exercises or complementary therapies do you use to help manage your symptoms? Have questions about exercise and wellness? Comment below!

    Parkinson's Affect on Vision

    I would like to share how my family has benefited from this website. My Dad, who also has Parkinson’s, has been having trouble with double vision and eye fatigue. He could not read and had to stop driving. This article, https://parkinsonsdisease.net/clinical/vision-issues-symptom/, was so informative that I shared it with his eye doctor. His doctor, who, at a prior visit said that his vision issues were due to dry eye, reconsidered his diagnosis and did additional testing. My Dad now has prism glasses and can read and they have eliminated his double vision.
    Thanks ParkinsonsDisease.net!
    Regards, Kelly, ParkinsonsDisease.net Team Member

    Revealing your PD diagnosis at work

    Hi everyone!

    I would love to solicit your thoughts on revealing your PD diagnosis at work?

    I have been advised by my neurologist, family and friends to NOT reveal it at work because they can use it to terminate your employment. Then, you read that there are protections for being terminated because of a PD diagnosis, but HR groups can be tricky in disguising that reason when you’re let go, so how to prove it?

    PD websites give varying advice: don’t reveal your PD diagnosis until you’re ready to ask for accomodations vs. reveal it because you will miss out on a lot of support, and hiding PD is stressful and exhausting.

    What are your thoughts? Thanks in advance!

    Jennifer (BakerandShaker)

    Service Dog

    Hi. I just found out this month that I have Parkinsons though I suspected for several months. At first, I thought it was just my arthritis getting (much) worse. I was already planning on getting a Collie pup that I will train to be a Service Dog, but I’d like to know if there are any books, websites, DVDs , etc. on training a dog specifically to assist someone with Parkinson’s? Thanks.

    Diagnosis Advice

    Receiving the diagnosis of Parkinson’s disease can be one of the most difficult things one will face. Now that you’ve been diagnosed, what advice would you give to others who have been newly diagnosed?

    Young onset

    I was 31 when I was diagnosed
    Is there anyone else that young in here?
    I’m 40 now

    Walking sticks vs. canes

    I recently switched from a traditional cane to a longer walking stick. I used the cane primarily as a balance enhancement but found that after a while, I was leaning on it more and more thus bending my back and shortening my stride.

    By substituting the longer walking stick, I seem to be maintaining a much more comfortable upright stance and using it only for balancing (and help on steps). I’m also able to lengthen my stride as I can swing it further ahead while walking.

    I bought a commercial walking stick via Amazon and shortened it to better fit my height. I also wrapped the top 12-14” with para-cord to improve the grip. I also drilled a hole through the top of the shortened stick to add a short loop to allow it to be hung from a hook. The only downside I’ve found is that it is a bit more difficult to put in the car or store in restaurants, but this is easily overcome.

    Hopefully, this will prove useful to some of you.

    David Stone

    Tremor

    I have been diagnosed with ET. My father also has ET so I am guess I get it from him. It came on right before I turned 40. The question I has any one experienced this? Just recently (maybe im just noticing it) when my thumb starts to tremor and I put my hand at rest ex in my lap it takes up to 20 secs for my thumb to stop with the tremor. It also stops if I support it with my hand. Then it will stay still until I move my hand again. Also this is intermittent (seems it never does it when I want to show somebody). This new tremor is kinda stressing me out because 1. it is new 2. I don’t know if it would be something besides ET.

    MEMBERS

    Where is everybody at? Approximately how many memers are on this forum?

    Extreme Fatigue

    Fatigue kicked in starting Feb. Feeling of malaise. MD increased Requip, then d/c it. Exercise getting difficult, anxiety up. Anyone experience this? Diagnosed 2011.

    Invisible Symptoms of PD

    Which invisible PD symptom do you wish people would see and understand? We want to hear more about your journey with the unseen difficulties with PD.

    Paranoia & Accusations

    My husband is about 8 years into his PD diagnosis and is dealing with increasing paranoia and making unfounded accusations. Has anyone else dealt with this? And if so, have you found a way to effectively respond to the evidence of these symptoms?

    Vitamins

    Can I use resveratrol for Parkinson’s. Is there any benefits? Can I also use Vitamin D3 and what dosage. I have not been diagnosed as yet but starting to recognize the symptoms.
    THANKS.

    “ Reiki”. Therapy

    I read the article about “ Reiki “ therapy And I am hoping for others to comment on it. I am fairly new to all of this as I was diagnosed about a year ago. I went about taking my meds and thinking I could beat/ control this Parkinson’s disease as Abby and everything else in my life. I am now realizing that I wasted time and I’m left feeling defeated. Please post your comments on this therapy what you know about it and any others like it thank you

    Self-care for Caregivers

    I recently had a discussion with a fellow PD caregiver about self-care. We discussed how hard it is for PD caregivers to find time to care for themselves. She had seen an article online talking about how important it was for caregivers to take time to care for themselves and immediately felt guilty. I assured her that it wasn’t meant to make her guilty but to provide a reminder how important self-care is. Sometimes, we need to be reminded the urgency of self-care.

    I’m fortunate that right now my husband can care for himself (23 years diagnosed with Young Onset PD) and isn’t a fall risk at home. I take our dog for a walk each day for a half-hour to an hour and 3 times a week I go for an hour of a bootcamp workout. My husband is very encouraging to me to continue my workouts! I’m very fortunate for this 🙂

    I thought this might make a good discussion topic. How do you care for yourself? What and when do you take time out? Do you make time for doctor appointments too? Do you have help to take this time away? How hard was it to get this started and continue? Please share your thoughts 🙂

    Post surgery care

    Hi to all. Let me introduce myself, I´m a caregiver. Im taking care of a VET with Parkinson´s disease and now he have to decide about having sirgury and remove his gall blader due stones. In 10 years he never had any trouble with it untill two months ago that one stone move out of the blader and cause obstruction but finally disapered and all came back to normal, never had any pain. Doctor want to remove it and other doctor think that we have to think about the recover affter. I had mine removed long time ago and unfortunatelly they couldý make it with laparoscopy and had to open my belly and i had such a very bad time recovering up to 6 month ..and i know if that happens with him wiht Parkinson´s is going to be a nightmare. We think do not attemp the gall balder remove unless he have future pain or another trouble. Any opinion about will be apreciated..Thanks.
    Sorry about my english , im Spanish and i try my best.

Viewing 20 topics - 1 through 20 (of 32 total)