#90: Parkinson's Symptoms Come Go
ฝัง
- เผยแพร่เมื่อ 16 ม.ค. 2024
- In this episode, we discuss symptom changes. Every Parkinson's patient is different: their symptoms, disease progression, response to medications...everything. It's always good to keep a journal and document any symptoms, whether they come and go or come and are here to stay.
![[TH] VCT Pacific Stage 2 - Week 1 Day 2 // GEN vs T1 | PRX vs TLN](http://i.ytimg.com/vi/ZkFjjJNwzH0/mqdefault.jpg)
My wife is a LPN, and at one the first nursing homes she worked at there was guy who had to have his hands bound to a splint to help reduce hus pain from distonia. His hands & fingers would twist & contort otherwise. Being new she was on the night shift charge nurse. He started complaining about his hands hurt regardless of the splints. She decide to take 10 minutes to massage his hands, and slowly stretch out his fingers. He thanked her, saying it was the first time in a long time that the pain was manageable. He slept through the rest of the night. So she decided to make sure to set aside 10 minutes at the start of her shift to help him stretch his hands & fingers. So there's a lot to be said for keeping moving, and stretching regularly through out the day. It has realy helped with the distonia in my feet, which feels like walking on sharp rocks when it is bad.
I've had a reduced (as low as near zero to 80-90% at times) sense of smell/taste for over 10 years. Once, back in Feb-Mar I had fully restored 100% sense of smell and taste which was so overpowering I could hardly stand it.
Thanks for all you do by sharing your PD experience. You've been immensely helpful to me as I complete my first year of living with PD. Again THANKS!!!
I’m glad our stories are helping others like you! That was our goal!! Take care.
Massage Envy has stretching available, I can tell you it’s wonderful, helped my mobility and it also helped my joints feel better. I think our joints hurt more at times because we can be so rigid and don’t utilize our full range of motion enough. It’s a bit expensive but so worth it.
One of my earliest symptoms. Years later after being on C/L, every now and then I can smell stuff. Not all the time but sometimes 😊
Thanks again for your insights ❤
It’s the good days and rock steady boxing that keep me motivated and moving. I have these same conversations with my friend at rock steady. He’s 12years ahead of me with PD and start having symptoms at the same age as I did. Can’t say enough good things about my rock steady classes.
Hi! 10 years since my diagnosis. Just had my DBS 6 weeks ago with fantastic results. I've completely stopped taking meds (from up to 20 tablets a day). I binged your pods prior and they were an inspiration. Thank you!
Wow thats amazing to hear!
Congrats on DBS!! You are like Brian, completely stopped meds after DBS. Not everyone can do it, but I’m sure it feels like freedom!! Wishing all the best to you!
I had shoulder pain for years until I was treated for b12 deficiency.
Hello I remember some years ago before I was diagnosed with PK, I was diagnosed as having gout and the fluctuations was from the accumulation of uric acid in my joints and now I know it was early onset PK.Thanks and take care to you all
Me too
I got it back. But not all the time. And it's not always right I'm 76
Have you had the night terrors? They become dangerous sometimes.
I haven't had night terrors like others have experienced. I have very wild, vivid dreams. I do know some PD friends who have night terrors and they talk about how they lash out and throw their arms around.
Two questions - if every PD patient is different why is everyone treated with the same medications? Also if PD is progressive why do symptoms fluctuate? I listened to something once that said if it fluctuates more likely to be something external than the cause than the disease it's self.
The fluctuations is from the amount of dopamine available at that given point in time. Simply being frustrated, or very happy can can cause the amount of available of dopamine to change. The reason the use of the same or similar medications is because they are mainly treating amount of available dopamine. But each person will eventually end up on a different medication regiment. Some will require more of one medication, or mix of medications. So far they only medications that address the motor symptoms by adjusting the amount of dopamine. There are current studies going to see if newer medications can delay, or stop the progression of PD. So there are some newer medication treatments possibly available in the near future.
I am 79 (80 in August) and have persistent soreness in right shoulder.
My symptoms are almost always calmer in the evening and I can't figure out why. Between diet and med schedule there's no obvious pattern. I wish I could unlock this mystery so i can feel better more often during the day.
It could just be because you are starting to wind down. It's probably not something to replicate during the day, but if you figure it out, let me know!
Hi I’m in need of advice . I have a lot symptoms and my dr couldn’t see anything on a basic exam . He said it’s not anything serious and seems to think it’s my spine. The problem is I’m almost certain my symptoms were not present the day of exam. These symptoms come and go … but now I have mild symptoms daily on my left side .. anxiety or sickness or weather can make the left side worse .
What do we do when we are ignored I also am certain I experienced Dystonia the issue is it didn’t present on examination . I don’t want to say what I have to him because I found drs can do not like us saying what we do and don’t have . I’m so tired of gaslighting and having to tip toe around drs ego . Whatever is happening is surly progressing and I’m being ignored or told it’s ptsd since I have a history of such . Last time checked ptsd doesn’t do the things I’m having happen.
What’s the best why to talk to a dr that’s won’t come off as if I’m a know it all and offend them .
Is it a movement disorder specialist neurologist or a general Neurologist? If general, go see the specialist
@@thesecretlifeofparkinsons regular neurologist . How would I suggest I need one . These drs are very difficult to get referrals . What would you say ? I’m just thinking on saying I’m in pain and I having trouble moving the way I used to .
He suggested ortho which I’m seeing .. and he even suggested counseling for ptsd . I can’t go in my record and take the ptsd out or I would . I’m being judged as if oriole with ptsd don’t get sick too . Ty for responding . I feel so helpless my body feed like an enemy .
Call your health insurance and tell them you need to see a movement disorder specialist. They can tell you what you can do.
I would either call the office and tell them you want a referral to see a movement disorder specialist or send them a message if you have an online portal like my chart. They can’t say no, right?
I recently was told by a neurologist that shoulder pain has nothing to do with Parkinsons. She said she didn’t deal with that…which I understand being a “neurologist” BUT I have a question in light of her response. Should I find a new neurologist? Did her statement/response reveal a lack of knowledge about Parkinsons?
When were you diagnosed? I was diagnosed over 4 years ago and when I told my neurologist about my shoulder and elbow pain she wasn’t sure if it was PD or something else. But after a year when I came back and still had it, she said it was PD related. Depending on the timing, you might want a different opinion- just my point of view.
I was told the same when I was speaking to my nuerologist, but there are way to many of us with the same pain not to be related.