Christine
Forum Replies Created
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Hi! I find that chewing gum helps!
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This is a great news article!
https://www.cbc.ca/news/canada/new-brunswick/first-person-harry-forestell-parkinsons-dbs-1.6752210
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This is a great article!
https://www.cbc.ca/news/canada/new-brunswick/first-person-harry-forestell-parkinsons-dbs-1.6752210
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I think it all starts with being grateful for what we do have, and focus on the positive. Then optimism can flow. Every day my husband and I talk to each other about how lucky we are, and try to find joy and humour in our situation.
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Hi!
Yes, I’m very happy I had the surgery (August 2021) as I no longer have tremors in my upper body, and I think it has slowed the progression. The difference it has made in my life is astounding. There are a few things that frustrate me still, but nothing like those horrible tremors!
Sometimes I forget that I have Parkinson’s!
Before DBS, I didn’t participate very much in conversations, and any group settings – I had to forget about talking because my tremor would get so bad whenever I spoke! This made me super self-conscious. Now I’m making up for lost time, and enjoying social situations way more.
I think it is really important to have realistic expectations for the surgery though. I have a couple of friends that were very disappointed afterwards, and have not experienced much relief from their symptoms.
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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 acknowledged my PD, or DBS surgery, or anything. My husband then told me that they had asked him about me, so he had told them basically everything I have gone through in the past few years. I would’ve much preferred if he had said – go ask her! It’s her story to tell!
So, I guess that is how I’d support your dad, ask him about it.
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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 drunk! My life has changed dramatically since DBS – I recently signed up for an art course, and a dancing course! I have way more energy, and people aren’t always asking me if I need help. I feel way more ‘normal’.
I have quite a few friends that have had DBS, with varying degrees of success. I think it is important to have realistic expectations. My neurologist said they have the most success with treating tremor. Also important, get back on the exercise train as soon as possible after surgery!
Good luck to everyone who has a surgery coming up!
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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 levodopa never worked for him? Who knows.
For me, however, DBS was life altering. I feel so much better and can do so much more.
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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 any downside to this surgery, for me at least!
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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, and it did! It would last about 3-4 months.
Now that I have had DBS surgery about 2 months ago, the pain is entirely gone. I just hope it stays away. -
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. would love to hear others experiences.
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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 one silver bullet, it’s a combination of treatments. Good luck!
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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. That was huge for me, and even my husband and a few friends noticed. Here’s the thing though, I started the mannitol at the same time I got back to ‘in person’ Rock Steady Boxing. I love boxing and it always makes me feel better, so I really am not sure if my current status is because of the mannitol or the boxing! Whatever it is, I’m feeling good!
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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 now, after two months I feel OK, but I can’t honestly say my tremor or stiffness is any better. I still feel like I need more dopamine. I think I notice it the most with my sleeping, which is to say I mostly sleep through the night instead of tossing and turning for a couple of hours each night like I used to. Also my dyskinesia is gone. My insurance does not cover it, so I am  debating whether it is worth the price ($122/month).
My plan at this point is to wait a bit longer, hopefully get back to my ‘normal’ level of exercise when the gyms open again, and see what unfolds in the next 2-3 months.
Thanks for sharing.
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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 week, and the only thing I could pin down was the patch location. Any thoughts on this would be welcome!
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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 weeks. I realize it can have its own crazy side effects but I really need something! I am curious about other people’s experiences too, so will watch this space.
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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!
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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 at our local Y, which I also like for getting a solid workout, but at RSB it’s nice to be around people who ‘get’ me. I don’t feel self conscious about my tremor or balance issues at boxing. I always leave class feeling much happier. Just talking about it makes me happy! LOL.
While my Parkinson’s has definitely progressed, I do feel stronger physically and mentally, due in a large part to RSB, I believe.
Happy New Year!
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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 minute nap! Now I feel like I should try again. Do you have a device you are using at home?
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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.
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No I haven’t. Do you have any experience with light therapy?
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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 left side are curling under and that affects my balance. I also get stabbing pain at night. So frustrating! I take Tylenol for the pain some nights.
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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.
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Hi! I just finished a speech therapy course, and I believe it has helped! Now, I try to sing out loud whenever I’m alone, like in the car or shower. In fact, I’m even having an easier time swallowing my pills. I guess it’s just another muscle that needs to be exercised!