[Kim]

No this is one symptom that has not been helped by meds.(Rytary). It’s quite depressing so I try not to think about it. I’ve lost my sense of taste as well. Like you and others loss of smell was one of my first symptoms and I noticed it years ago. I am replying because you didn’t say if you can attribute your recovery of the ability to smell to something in particular. What is your treatment plan if you don’t mind sharing?

[Kim]

I want to say that everyone’s input has helped me and I appreciate the information. This forum also makes me realize that lots of us have had to try various approaches (I am not alone) and that not every treatment works for everyone. I am having some success taking magnesium and stool softeners so I am optimistic. I had tried it before but the magnesium made me nauseous and I don’t think it was the right kind of magnesium. I found a brand of magnesium citrate (Pure) I like. Hopefully this does the trick for a while. Now to focus on getting relief for my low back pain…

[Kim]

Struggling with constipation would be an understatement. This started way before Parkinson’s was even on my radar. I even underwent two colonoscopies as a precaution. Glycerin suppositories used to work now I take stool softeners daily, drink 80 ounces of water, exercise, and even use Dulcolax suppositories but this does not seem to help. I am also currently taking motegrity, which I don’t think is working for me. Taking bulk fiber, or things like MiraLAX just makes it worse because I don’t get an urge to go and everything just seems to get stuck—for lack of a better way to describe it. I would love to hear the suggestions of others with Parkinson’s that have been successful in treating this symptom.

[Kim]

I have recently begun incorporating more fiber into my diet both soluble and insoluble. A good friend is an herbalist and believes in the gut brain health connection but that we should try to get as much as possible from whole foods rather than supplements. My friend and her colleagues state that “by supporting our microflora, fiber supports the production of neurotransmitters in the gut.” I’m curious to see if this has an impact on the dopamine my body produces. Has anyone else explored this route?

[Kim]

Hi,

Anyone take supplements and C/L? I’ve read some can affect the efficacy of C/L. I take some supplements but worry about taking them all at once and wonder if one of them could be causing “off” time now and then. My neurologist knows all I take so I assume it’s okay. Any insight?

[Kim]

Hi,

Anyone take supplements and C/L? I’ve read some can affect the efficacy of C/L. I take some supplements but worry about taking them all at once and wonder if one of them could be causing “off” time now and then. My neurologist knows all I take so I assume it’s okay. Any insight?

[Kim]

I go every 3 months. If I have questions between appts I can always message my PA or MD through Hartford Healthcare’s patient portal. They respond very promptly. I am lucky to have a great team of doctors.

[Kim]

Been trying the cream on my painful low back but don’t really notice a difference. Might try some other forms. So thanks for sharing.

[Kim]

When I was diagnosed in 2020, it was a giant Ah ha moment. I had many symptoms that I now know are Parkinson’s related but couldn’t be explained at the time. I had been a fitness instructor for over 35 years and my first foot started to spasm and get weak during class. Then I had difficulty walking—it felt unnatural and awkward. When people would walk with me it felt fast, but it was really me slowing down. My upper body wanted to tip forward. My doctors thought I was a hypochondriac, and I don’t think I was taken seriously partly because I don’t have tremors. But before I was medicated, it reached a point where I couldn’t do things like use a can opener, peel potatoes, or open a pill bottle. Other symptoms I have experienced include:
*Nagging low back pain (still have)
*Loss of smell and taste going back 10 years (still have)
*Constipation (still struggle with this)
*Weird dreams and yelling in my sleep
*Inability to turn over when lying down.
*Insomnia
*Couldn’t stay afloat in a pool
*Constantly overheated and sweaty unless in a/c room.
*Pupil slow to dialate (on more affected side only)
*Urgent need to urinate and can’t hold it. (I’ve wet the bed twice)
*General weakness
*Aching and throbbing arms/legs- also an initial symptom
*hoarse voice and then soft voice—loss of singing voice – this is better now with meds
*loss of balance
*dizziness
*heart palpitations

I’m sure there are more I just can’t think of now. Many of these have eased with medication, but not the back pain. I do yoga everyday try to stay strong by lifting weights, doing push up’s, etc.

Hope this helps!

[Kim]

I have been struggling with it for years even before my PD diagnosis. It’s the reason I had an early colonoscopy (normal). I have tried miralax too but still felt the uncomfortable bloating. I now take motegrity which greatly helps my bloated feeling but I still suffer from the lack of an urge “to go.”  I find the only relief is some kind of stimulant laxative (once a week or so). I am lucky to have great doctors and I have a GI doctor who specializes in neurological GI disorders. I think we are all different and have to find what works for us. Also, what works initially won’t, unfortunately, work forever I have found. Good luck!

[Kim]

I have had SVT for several years and now that I know I have PD I am convinced they are related.  I get tightness in my chest when I increase exercise intensity even though I was a fitness instructor for almost 40 years. Not as often now that my PD is treated, but my heart occasionally still trips into a 160 beat rhythm and doesn’t stop until I am in the ER receiving a shot of adenosine. This actually briefly stops the heart so that it can resume its normal rhythm. It is NOT a good feeling! I still do yoga and walk, but intense exercise is no longer possible. And my doctor has also said it is not life threatening but it is still worrisome to me. Wanted to share. By the way I am 59 and diagnosed 2 years ago.

[Kim]

I always slept great being very active during the day and keeping a consistent sleep schedule for years. I’ve never had to use an alarm clock to wake up, for instance I just wake up. However, since my Parkinson’s diagnosis, it’s becoming harder to sleep through the night. I find myself sleeping five hours and then I wake up. I tried doing deep breathing exercises and sometimes it helps me fall back to sleep; other times I am just resting and never really fall back into a deep sleep.

[Kim]

For years before I was diagnosed with Parkinson’s I would get this sensation in my head like I was underwater— I guess it was kind of like a muffled sound it’s very hard to describe— it would not last long several minutes maybe—and I still get them.  I still do not know what it means and won’t even bother asking the doctor about. As I don’t get tremors, it took a long time to be diagnosed. Just glad I persisted and didn’t resort to “talk therapy” as 2 doctors recommended.

[Kim]

Hi Fred, thanks for responding. I agree that exercising and a strong core should help with back pain. Unfortunately for me it hasn’t really helped. I taught fitness classes for years before I had to stop because of Parkinson’s. That’s what is so frustrating. Also my neurologists seem convinced my back issues are not Parkinson’s related but I disagree. At the very least the Parkinson’s is contributing to my pain. Anyway, all I can do is to keep moving! Good luck to you!

[Kim]

Hi Julio, thanks for your reply. I agree with everything you stated. I was a part time fitness instructor for over 30 years until I had to stop because of Parkinson’s symptoms. I have a strong core and still do abdominal and strength exercises. I started yoga during Covid and still do a 10 minute yoga stretch every morning. But I’ve had to abandon the forward folds and other twists because it makes my pain worse. I have added riding my stationary bike for 15 or 20 minutes and then stretch my leg muscles (I use a strap for hamstrings and hold for a full minute). I still have pain and I am still exploring other treatments but I’ve concluded that exercise and conditioning so that you can stay strong is key. I wish you well in the future.

[Kim]

I can totally relate to your reply. You definitely feel alone because no one really gets what you’re going through, especially for non motor symptoms. My meds used to control most of my symptoms fairly well, however, recently I seem to have more off time when my legs just won’t walk the way they should (yes they seem to say it’s okay to shuffle) and the hot flashes and muscle aches start in again. The back pain is the worst. I’ve tried so many things to alleviate it and your friends try to give you advice, but they just don’t get that the root cause is something that can’t be fixed. The fatigue is bad in the afternoon, and my husband gets annoyed with me when I nap but he just doesn’t get it. I still work full-time as an elementary school teacher, and before my symptoms got bad I was also a part time fitness instructor for over 30 years. (Now the 6000+ steps I get during my school day is all I can handle for exercise). I don’t look like I have a disease, except when the meds start wearing off and then I worry that people will think I’m drunk or wonder why I don’t stand up straight. I’ve always been the one taking care of everyone else, and I just hope that if I stay active it will help me do my normal activities for as long as possible. I could go on forever but I know those of you reading this understand.

[Kim]

I would say right now the thing that bothers me the most is my low back pain I cannot bend or reach without grabbing pain. I’ve gone to physical therapy, acupuncture, chiropractic, and have taken over the counter pain relievers, but nothing seems to help. It’s very discouraging.

[Kim]

I would say right now low back stiffness and pain. If I sit too long or stand too long it flares up. The current meds I take don’t really help it.

[Kim]

Hi Elise,
Thanks for the info and for sharing your symptoms. It’s exactly what I deal with with regard to pain after sitting or standing too long. I’ve had this on and off even before PD was on my radar and just thought I overdid in exercise class. It would get better and not bother me for a decent while. I am now convinced this was the flicker effect leading up to more frequent symptoms. I also had loss of smell and taste but it would seem to come and go. Anyway, Thanks for relaying and responding. Happy New Year!

[Kim]

Thanks for replying. Sometimes I think my symptoms are not the norm, but I do realize this disease can be so different from one individual to the next. I’m curious as to how long you have had symptoms and if your MD has recommended the DBS. I always assumed DBS was mostly done with the goal of eliminating tremors. I thankfully don’t have tremors. I have also wondered if more men than women have tremors. Do you have them? Good luck and thanks again for your response.

[Kim]

I have an itchy scalp as well. No dandruff.

[Kim]

Yes I would love to share my story. It’s a fairly new Parkinson’s journey as I was diagnosed in 12/20 at 56, but I feel like I am definitely not a typical case being female and a fitness instructor for close to 40 years. It is frustrating at times to say the least. When I am feeling good and able to do a lot, even my family will say (jokingly) “you don’t have real Parkinson’s.”

[Kim]

The first thing I noticed about my speech was my voice would crack—I am a teacher so I read out loud a lot and my voice would crack with inflection. I also noticed that I was unable to sing without cracking. Once I was diagnosed (took 4 years) and began meds this got better. I talk pretty loudly at school but at home my husband will often ask me to repeat myself because he can’t hear me. I am 58 btw but Parkinson’s was on my radar back in 2016. I had also been trying for years before this to figure out why I could not taste or smell anymore.