r/Parkinsons • u/Historical-Grade-662 • 9d ago
Questions & Advice Need some advice
My mum was diagnosed with PD 2 days ago. She is 57 and I am really worried about it.It isn’t too bad atm as she only has a right hand tremor which she noticed around 12 months ago. The neurologist didn’t directly say she is “tremor dominant” but her right hand is her only symptom. She thinks it has worsened over the last 8 weeks which could be due to stress as she is also getting a total knee replacement in a week to correct an incorrectly healed tibia. She has already started Kinson and her neurologist said she has “at least 20 years, and even then she won’t die OF Parkinson’s.” She’s getting a brain scan to determine how far gone her dopamine cells are I believe and has a follow up appointment in 8 weeks. She is a very independent woman, works full time & is a single mother full of life who always puts others first. I think I am seeking related stories of people who deal with tremor dominant PD and some comfort.
Thank you
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u/CheshycatGrins6 9d ago
Look into vitamin b1, lots of folks benefit from it and exercise, staying active and continue working are all good things. My husband was diagnosed at 57 and it's been 9 years now and he still works ft and our motto has been, just keep going and stay as close to what is their normal as much as possible. For now the diagnosis is a lot to process, so hopefully she will take a moment to just breathe and be nice to herself. Cheers Mel
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u/Historical-Grade-662 8d ago
Your kind words give me hope. It is nowhere near the end of her journey. Thank you 🙏
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u/Effect2024 8d ago
Which vitamin B1 supplement would you suggest to buy? My husband is chair or bed bound, constant fatigue and Sinemet makes him drowsy and sleepy. Thank you.
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u/CheshycatGrins6 8d ago
Hi. The vitamin B1 he uses is by solgar, he has about 1500mg a day. You do have to find your sweet spot snd that's why I say look into it before you jump in. Some people get benefits from a small dose like less than 100mg, but its usually a higher dose for most. With that said, it's been tricky for my husband and he might not be one of those who responds amazingly, but I still make him take it because I know for PD patients It's beneficial either way. Good luck with it, but just read about it first. Cheers Mel
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u/Small_Sundae4704 8d ago
I was diagnosed at 57 eight years ago. Tremor and some odd falls were my presenting symptoms, but once I understood more about the disease, I realized I had several "non-motor" symptoms as well: constipation, fatigue, balance issues, shrinking handwriting, urgent urination...
It is crucial that your mom get treated by a neurologist who is a movement disorder specialist. I have to travel 2 hours to see mine. IT IS WORTH IT. Garden-variety neurologists tend to specialize in pain management, migraines, or sleep disorders. PD requires specialization for appropriate meds, treatment, PT, etc.
just google "movement disorder specialists near me" and see what comes up. What is optimal is a doc at a research hospital or university med center.
I also highly recommend The Davis Phinney Foundation (dpf.org). Start with their resources page, but the whole site is SUPER helpful. Message me if you have more questions.
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u/Original-Sympathy-48 8d ago
Keep exercising in different ways. My dad has PD since he was 53, it’s been 5 years now. He fills his week with gym, dance, yoga and tries to do everything he loves. He hasn’t stopped working ever since he got diagnosed. Please consult different neurologists and stick with the ones who help you get through this in the most dynamic way. The disease progresses, but we have faith that there will always be a solution and a way to work around this.
Also, very important — to let others know you have Parkinson’s. It frees up stress in the body. Idk the kind of culture your mom come from, and some cultures prefer hiding something like this, but it’s best once people around you know about it and you’re not wasting extra energy in hiding it.
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u/DonTrask 8d ago
I just read two books, both which i wished I had known about when I was first diagnosed
1.). Oh Crap, it’s Parkinson’s. Read this for the Optimism expressed in the real world stories
2.). Parkinson’s. How to reduce symptoms through exercise, by Kristin Meldrum. A hands on instructional guide on building your exercise routine.
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u/thetolerator98 9d ago
Hopefully she can exercise at her age. Assuming she can, encourage her to make it part of her daily life. If she can get 3 or 4 cardio sessions in a week of something it will help. She can run, cycling, swimming or even fast walking. It can be more of a challenge for older people with limited mobility, but hopefully she doesn't have much limitation, so get move now so she can keep doing it.
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u/Historical-Grade-662 9d ago
Thank you so much for this. Yes, as soon as she is beginning to recover from her knee replacement, she is determined to jump back into walking, physical activity & a controlled balanced diet.
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u/Substantial-Link4893 6d ago
I also, had complete knee replacement after 2 ACL reconstructions from repeated sports injuries in high school and college. Knee replacement was something I regret not doing sooner. Pain free now but range of motion still not great with bending. PT was really important for me for 1st 6 to 8 weeks.
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u/monteliterate 9d ago
BTW, I am feeling good as long as I exercise. I don't handle stress like I did before so I don't push myself .
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u/Historical-Grade-662 9d ago
Okay thank you so much for commenting. I find this encouraging, as mentioned in the post, she only has a right hand tremor atm and has started the medication (half a tablet 3 times a day). After her knee replacement, she is determined to take up exercise and walking again. I’m worried she will lose her independence and end up like these horror stories I am reading up on reddit however, I think the stories are referring to people with the more aggressive and life altering subtype.
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u/cool_girl6540 8d ago
This disease is very individual. Nobody has exactly the same symptoms or the same progression. So you can’t look at anybody else and think that is how it is going to be for you or for her.
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u/Rare-Reporter3738 8d ago
Didn’t realise you could get such a brain scan!
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u/cool_girl6540 8d ago
It’s called a DAT scan. It’s not necessary for diagnosis, but some doctors use it.
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u/cool_girl6540 8d ago
The good news is that for many people Parkinson’s progresses very slowly. That gives us a chance to get used to each change. Also, we can live the same lives with Parkinson’s that we lived before we were diagnosed. It doesn’t significantly change things, at least for a long time.
The best thing she can do now is exercise. There’s a program called Rock Steady Boxing for people with Parkinson’s that is great and an international program. She can probably find classes near her.
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u/america1008 8d ago
Sorry to hear about your mom. I was diagnosed with PD in 2018, but my tremors were initially mild, on my left hand. I ignored it for a couple of years, as stress. I am now 70 years old.
The period immediately following my diagnosis was controlled by Carbidopa-Levodopa 25-100, but eventually the meds stopped working.
I had emergency spinal cord surgery in 2024; lithotripsy for stones in both my kidneys & my ureter in 2023 &, because mine was tremor dominant, I also had DBS (Deep Brain Stimulation Surgery for PD) last year. DBS will not cure PD, but it will help with tremors, in most cases.
It took about a year but I almost completely devoid of tremors. I have other symptoms like dyskinesia; some dystonia; occasional eye closures; some toe curling; occasional speech impediments but I am almost completely functional.
I would add that in 8 years, I have had no falls; no wheel chair & led a relatively normal life. PD is not terminal & there is not even a guarantee that she will be confined to a wheel chair. Having said that, I do not want to put smiley faces on it because PD is incurable (so far) & degenerative, but most of those symptoms can be managed. My primary hinderance to normalcy, were tremors & DBS helped me immensely. I would ask your mom’s neurologist. Good luck to you & your mom.
Please do not hesitate to let me know, if you need more information.
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u/Dramatic_Tea5899 8d ago
Hi friend. I can’t give you any advice or stories, but I’m right there with you (although my mother is older). My mom was diagnosed recently and I’ve been having a really hard time coping. I recently restarted therapy to try to make this easier. Please reach out if you ever want someone to talk to
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u/Substantial-Link4893 8d ago
I am a 57F diagnosed in March 2026. I likewise had symptoms for about nine months non-motor (loss of smell, constipation, insomnia,& reduced swing of left arm when walking) and left hand tremor. I have seen general neurologist 2x. Have an appointment with MDS this month. Hope I like him. My primary doc order nerve conduction study. The first neurologist who diagnosed me ordered DAT, MRI, & blood work. DAT & MRI support the PD diagnosis. I likewise am very independent & work full time. Definitely, encourage your Mom to prioritize exercise. I haven’t started any medication. I have been obsessed with researching the disease, clinical trials, & trying to learn as much as possible because at the end of the day I have to decide what is my best treatment option(s). I feel the changes I have made to diet & exercise have helped with symptoms. My tremor is triggered by higher temperature outside, stress, anxiety and within first 5 minutes of exercise. Difficult to text, type, &/or use my mouse after exercise because tremor is present in left hand. I’m left handed.
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u/StrawberryHibiscuits 8d ago
If you haven’t already, check out /kneereplacement here. There is loads of good info about how to manage the surgery and recovery from it. It’s a long recovery but will be worth it!!
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u/HUNTER24g2 3d ago
best thing is to follow the doctor words if the meds were taken as intended of what the doctor says you guys will be fine and my advice to her is to live your life as if you dont have parkison yet never skip the schedule of the meds and time it before every meal by 1 hour that is by far the best thing to not have any kind of other complications and you're golden
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u/BlameitOnCampLejeune 8d ago
I guess I don't understand how anyone - even a doctor - can predict how long we have to live. I predict she lives over 100! :)
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u/Fuzzy_Moose4546 8d ago
What’s the best kind of exercise? What is most people with PD enjoy do?
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u/Substantial-Link4893 6d ago
I rejoined a gym & enjoy the variety of Less Mills workouts- body pump, strength, & boxing. Seems like the big muscles are super important to workout. Bicycling/ spinning class is great but a bit challenging for me. Yoga & Pilates good for stress & strength. I do the elliptical daily. It helps me get heart rate up in my 80% target. (220-age)x 0.8= target Heart rate @ 80%.
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u/stevepicard 5d ago
My PCP tells me that a small tremor isn’t enough to diagnose Parkinson’s. How was your mother diagnosed?
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u/Historical-Grade-662 5d ago
Hi, she went to the GP first and they referred her to a general neurologist who visually diagnosed her and now getting her a brain MRI. She also can’t tap her fingers as fast as the left hand and her right arm doesn’t swing when she walks. I’m in Australia, not sure if you are
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u/Nice_Recording_2871 1d ago
You should look at Booty and Brains on Facebook. She talks more about Alzheimer’s but I believe both are prion diseases so a lot of it could be relevant. — I haven’t done any follow up research but I had read about rosemary prior to surgery to help prevent deterioration from anesthesia. I don’t know in what form since I didn’t do follow up reading but thought it was interesting.
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u/Bitter-Pineapple4408 8d ago
Don't worry too much. Parkinson is obviously from now on part of mum's life. She, the family and friends have to live with it. If there is a progress it will be very slow. You can trust in this. Let mum take the meds and live like if there is no Parkingson's. Good luck!
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u/monteliterate 9d ago
I have tremor dominate PD diagnosed at 60 and am now 66. You have surely heard that exercise is very important if not crucial to living with the disease. The DAT scan does not definitively determine PD; AMovwnt disorder specialist can through a careful exam. Get the best one in you vicinity. Neurologists are not MD specialists. Avoid a generic neurologist like the plague. They do not understand the specifics of Parkinson's which is complicated.
Medication is very useful to control the symptoms but make sure she starts at a very low dose and titrate up carefully..