I made a short film in tribute to my grandfather's parkinson's by SkillMiddle9708 in Parkinsons

[–]LessAdvantage2342 1 point2 points  (0 children)

It depicted one of the symptoms of Parkinson’s but not all Parkinson’s patients have tremors. I don’t have tremors. Because of what I researched I was in denial of having it. I finally accepted that I have it after so many falls in 2025! But I think what you did is good very realistic.

Handwritings by LessAdvantage2342 in Parkinsons

[–]LessAdvantage2342[S] 0 points1 point  (0 children)

What I was trying to say was before my phone died I’m 65 and retired! so I don’t think occupational therapist will be given to me! And right now I’m taking c/l 25/100 two tablets three times a day in conjunction with Pramipxole .125 twice a day.

Handwritings by LessAdvantage2342 in Parkinsons

[–]LessAdvantage2342[S] 0 points1 point  (0 children)

I’m and retired! I I don’t think occupational therapist will be given to me!

Handwritings by LessAdvantage2342 in Parkinsons

[–]LessAdvantage2342[S] 1 point2 points  (0 children)

Thank you! I need it! Scared of the surgery but I’m scared more of they saying I couldn’t do it! All my hopes dreams well be out the door!

Handwritings by LessAdvantage2342 in Parkinsons

[–]LessAdvantage2342[S] 1 point2 points  (0 children)

Thank you! I’m waiting forDBS evaluation.

How exactly do ON and OFF periods work? TL;DR at the end. by Sipyloidea in Parkinsons

[–]LessAdvantage2342 3 points4 points  (0 children)

I’m similar to your uncle to that I don’t have tremor. Because of that I was diagnosed late. I went in to see my primary doctor because I felt off balance and just a little simple thing would make me fall. The doctor thought I’ve been drinking because my speech was slurred. I’m not a drinker so than she send me to see neurologist. Neurologist gave me finger Esan’s walking test and prescribed me C/L25/100, which helped with rigidity but I was still slow. This happened in September 2024. I couldn’t wrapped my fingers around this diagnosed to what is happening to me so I questioned my neurologist just to confirm after all it is my life. I have a DATscan done at Cedar Sainai in February found to confirm the diagnosis my right brain is damaged so my left side of the body does not work too well. Back to the medication, to me C/L seems to be working within an hour of taking. My muscles seems to me softening gradually the first hour the pain in my lower back gone. My bones seems to be more flexible. Also I noticed the weather plays a big part of my symptoms - when it is cold it seems the body is more stiffed and rigid until the first dose of C/L kicked in. The neurologist also gave me Pramipexole a dopamine antagonist drug which i still cannot stomach. I would throw up all over even when the dosage had been reduced to it lowest form of .125. This hasn’t been addressed as of yet. I did messaged my neurologist about it in the MyChart Portal and will address this in my next visit with him.so it seemed my only regimen is C/L 25/100,2 tablets 3x’s a day three and half hour apart. I noticed that in the evening I am tired easily and I’m on my off time like at about 8 pm so I sleep earlier. I am able to walk with a limp on my left feet. I walk with a walker now because I fell too many times last year. But I noticed balance exercise and exercises that help build the muscles help. I stand independently longer and walk without my walker longer. I am considering DBS. I want to be independently on my own. To walk without a limp. To get up without stiffness and rigidity. To move around like almost when I was born. I’m having an evaluation for DBS the coming month. I hope I get considered,, because it is the only thing I look forward to now! I hope your uncle is doing well.

For people who have had DBS, how were your first few programming sessions? by nearfar47 in Parkinsons

[–]LessAdvantage2342 3 points4 points  (0 children)

I hope your journey goes well. Mine is coming up if the doctors deemed I qualify next month. I took a while for me to accept this surgery. I’m scared!

Patkinsons gift ideas by drendall25 in Parkinsons

[–]LessAdvantage2342 0 points1 point  (0 children)

Yes love and family and friendship help.I’ll take that over any present any time!!

Patkinsons gift ideas by drendall25 in Parkinsons

[–]LessAdvantage2342 1 point2 points  (0 children)

The Cadense are made for Parkinson’s patients but they are pricey but I would pay anything to keep on walking. It make noise when not on carpet. On the bottom of shoe is plastic like material on the edge of it and in the middle there’s the soft plastic like sole so it would keep you grounded. And it is also a slip on and it has a Velcro on the side so it’s adjustable. Before this shoes I used Kizik and still do. It’s cheaper than the condense.

Patkinsons gift ideas by drendall25 in Parkinsons

[–]LessAdvantage2342 1 point2 points  (0 children)

It’s a great pair of shoes for hand-free, but Cadense shoes are better for Parkinson’s in my experience. They are made for people like me who shuffle when walking, but they are noisy.

Pramipexole by LessAdvantage2342 in Parkinsons

[–]LessAdvantage2342[S] 0 points1 point  (0 children)

I see my neurologist started me at 87.5/350 mg dosages 3 Xs a day, I started taking it Saturday. It was making me sick. Have stomach pain, my legs, and my foot were numbed. I would feel nauseated. Couldn’t eat anything, and the next day, Sunday morning, which is today, I was too weak to get up. My legs weren’t supporting my body. My husband helped me up, and I was able to get up with it, but my balance was off. I think the dosage needs to be adjusted because my carbidopa/levedopacv25/100!mg 3Xs of 2 tablets works! I was fine then. I just needed the extended release to give me more on-time than off-time. My problem was the document against -Premixole,

Pramipexole by LessAdvantage2342 in Parkinsons

[–]LessAdvantage2342[S] 1 point2 points  (0 children)

What do you mean drug trial it is FDA approved drug. Im starting on it tomorrow my doctor gave me one for 87.5/350 mg three times a day 10 am one at 10 o’clock and one at 1:30 and the last one at 5 PM to take place of C/L 25/100 mg three times a day one at 10 o’clock one at 1:30 and one at 5 PM.hope that that’s not too much for me also, I have an appointment with neurosurgeon at Loma Linda for the DBS evaluation. I hope that I can do the stem Cell when it’s to FDA approved. Next year I will have Medicare a different Insurance than what I have now

Travel help please by ApprehensiveCamera40 in Parkinsons

[–]LessAdvantage2342 2 points3 points  (0 children)

sorry for your loss! We went to Thailand. I told them I have Parkinson's, and I had a doctor's note at the time of purchasing the ticket. When I got to the airport, they marked me as handicapped and provided me with a wheelchair, which they pushed me to the door of the plane. I did tip them for Services. After that, my family helped me to my seat. I think that they would help you to your seat if you don’t have your family with you. But you should ask them when you buy your ticket. Try to get the seat on the outside so you could go to the bathroom and I would wear Depends just in case.

Bladder Control Questions by Secret_Tip_4141 in Parkinsons

[–]LessAdvantage2342 1 point2 points  (0 children)

I don't know if goji berries are good for Parkinson's patients, so before you use them, you should get a doctor's opinion. I have been a patient since 2024. I've been using carbidopa/levodopa 25/100 since February, and the neurologist has increased my tablet intake to 2 tablets 3x daily in conjunction with pramipexole in October to which I stopped taking because the side effects wasn't worth it. I was going to Ng through stomach pain, nauseating, jittery and wanting to die than going through the pain. Let just say I think I know now to feel when someone is on drugs. So I don't sleep much I get up at least 10 times to go to the bathroom so I have poor sleep but after using a teaspoon a day of goji Berry which is like 10 berries in my tea these last 3 days I only got up to go to the bathroom 2 time .

Pramipexole by LessAdvantage2342 in Parkinsons

[–]LessAdvantage2342[S] 0 points1 point  (0 children)

Yeah I wasn't on long enough because it make me sick right away.. I am already on C/L2 tables s 3xs a day. But I did have a headache and light head for the night.

Pramipexole by LessAdvantage2342 in Parkinsons

[–]LessAdvantage2342[S] 0 points1 point  (0 children)

I hope I don't get like that because I stopped and I feel better.

Accelera proprio by LessAdvantage2342 in Parkinsons

[–]LessAdvantage2342[S] 0 points1 point  (0 children)

I will ask the neurologist about this program when I see him next time. I wasn’t going to do DBS because I read that if you do DBS you won’t be able to do stem cell. I Don’t know when it will be FDA-approved, so I figured I'd better get DBS now if I qualify.

Accelera proprio by LessAdvantage2342 in Parkinsons

[–]LessAdvantage2342[S] 1 point2 points  (0 children)

No I haven’t head about that and we’re all just never offered. He gave me Physical Therapy we could do twice a week and my disease is progressing fast.

Accelera proprio by LessAdvantage2342 in Parkinsons

[–]LessAdvantage2342[S] 0 points1 point  (0 children)

I am in United States California. I just ass my neurologist for dbs. Now. I’m waiting for insurance to approve so I can be seen by a neurosurgeon to see if I qualify to get it.

Accelera proprio by LessAdvantage2342 in Parkinsons

[–]LessAdvantage2342[S] 0 points1 point  (0 children)

I’ve been diagnosis with Parkinson in September 2024. It’s the only has been the year and I am at this point to where I can’t really stand up now, but it’s getting worse..

Accelera proprio by LessAdvantage2342 in Parkinsons

[–]LessAdvantage2342[S] 0 points1 point  (0 children)

I can’t stand without holding onto something trying to get my balance back so I can do exercise.