Christine

Recently we had a family gathering, and there were some people there that I hadn’t seen since before I was diagnosed – 7 years ago! Not even once did they say anything to me about Parkinson’s, except a general How ARE you? I found this very frustrating, and weirdly hurtful. After everyone went home I mentioned this to my husband, that they hadn’t…[Read more]

I have had DBS. I got it last year at age 60. I was diagnosed at age 54. My worst symptom was tremor, and that has basically been resolved, except for my legs, but my neurologist said if she adjusts so that my tremor is completely gone, it will affect my voice. Right now, when I’m tired especially, my voice goes very soft and I sound sort of…[Read more]

Yes, I had DBS in August of 2021. I was diagnosed in 2015 at the age of 54. My main issue was tremor, and I responded well to Levodopa. As Steven Oppen (above)said, if you don’t respond to levodopa, you probably won’t have good results with DBS. I have another friend who had DBS about a month after me and he didn’t have good results, maybe because…[Read more]

hello! I had DBS only two months ago, and I’ve seen dramatic changes.

greatly reduced tremor.

medication reduced to 4 x 1/2 levodopa per day, as opposed to 12 levodopa per day, 1 every 2 hours.

I can sleep through the night.

Weight gain (positive).

less stiffness

I am more expressive

Thats all I can think of right now, but there hasn’t been…[Read more]

Hello! Extreme neck and shoulder pain was my first indicator of Parkinson’s disease. It started in 2015, and a few months later I was diagnosed. I had no relief, even though I regularly went to physio and massage therapy. Then, after a couple of years, my physiotherapist suggested that Botox in my neck and shoulders might give me some relief, a…[Read more]

I am curious about other people’s experience with mannitol. I used it for 3 plus months, which were coincidentally good ‘on’ months for me, but the stomach upset was too much for me to handle. Seriously, always had to be within running distance of a washroom. So, I’m still not sure if the mannitol was a positive addition to my regime, or not.…[Read more]

Hello! Truthfully I’m not certain that it’s dystonia I have in my neck, but the muscles will get super tight in ‘waves’. It is very painful and uncomfortable. I get Botox in my neck every three to four months and that has really helped. Plus I have massage therapy every two weeks, just for my neck. I find with every Parkinson’s issue there isn’t…[Read more]

Hi,

I signed up on Clinicrowd and started mannitol about 1 month ago. I find their website a bit confusing to navigate, but did figure out a dosage for my body weight. Although the mannitol does seem to make me feel bloated (especially the first few weeks), overall I’ve been feeling quite good, in fact I had a tremor free day about 2 weeks ago.…[Read more]

Thanks Julian, that makes me feel less crazy! LOL.

David – I felt terrible when I started the patch as well. What I ended up doing (after ripping it off after one day of almost total shut-down), was I weaned myself on to the patch, just using half a patch a day, plus reduced my dopamine to pre-dyskenisia dosage (all on Dr.s orders, of course). So…[Read more]

Has anybody noticed a difference in the efficacy of the patch when it’s placed on different locations of the body? It was possibly a coincidence, but I was sticking it on my thighs for about a week, and truly had a terrible week. The day I switched it on to my arm, I had a much better day. I tried to figure out what was different from the previous…[Read more]

Hi Scott,

my neurologist has talked to me as well about the NeuPro patch. I am already on levodopa/carbidopa, 5 – 6 pills a day. The way she explained the patch to me is that it will support/ boost the levodopa that I am already taking, so ideally get good results without dyskinesia happening. I am most likely going to start on it in about 2-3…[Read more]

Thanks Jean! You’ve been very helpful and encouraging in your role as moderator. I look forward to your articles (can’t wait for one on red light therapy).

All the best!

Hi!

I’ve been going to Rock Steady Boxing for almost 3 years now, started about 1 and  1/2 years after diagnosis. I love it! It’s a great workout and, more importantly for me, it’s a great mood booster. I am so inspired by our group. There are many levels of PD in the group, and everybody just goes for it and does their best. I do other classes…[Read more]

Ohhh, red  light therapy! I was thinking you meant a ‘happy’ light, like you can buy at Costco!

I have tried red light therapy and quite like it. Unfortunately the location of the place that offers it is very inconvenient. I’m not sure if it made any difference as I really only stuck with it for a month or so, but it was a good excuse for a 20 m…[Read more]

Reflexology hasn’t been on my radar at all. Maybe it should be. I’ve had Botox injections in my foot about 3 times in the past 2 years. That really helps the pain, but is such a painful process itself, at this point I can’t bear the thought of doing it again.

No I haven’t. Do you have any experience with light therapy?

Yes! I have terrible foot pain, and not sure what to blame it on. I went to a podiatrist and ended up with orthotics which help but don’t solve the problem. Lately I’ve been wearing compression tube like socks that are meant for plantar fasciitis, they help somewhat. Also stretch my feet and toes out as much as possible because the toes on the…[Read more]

I need that shirt too! I still care about the most important things – family and friends- but jeez, housework? Nope! What to make for supper? Nope! What I’m wearing? Nope! The list goes on, as you can imagine.

These shorter sunlight days don’t help either.

I do love exercising, but not so much winter sports! Part of the problem is that as soon as I shiver – BOOM- it’s like my tremor has been shaken awake and I can’t get it to calm down. And then all the concerned people saying “you must be frozen” because they think I am simply shivering a lot, kind of wears me out a bit too.