A survey: How is your Parkinson's now compared to one year ago.

[Bailey_Texas]

Give a general answer in % or by symptom.

This is me doing a how to video for Youtube. That is my son in law with me and it is his car.

youtu.be/TjkCevWzyHM(Not working as expected?)

[Hidden]

Where can I see you a year ago?

[Hidden in reply to Hidden]

Sorry , I thought you wanted us to see the improvement in your movement compared to a year ago. Sir, you are a beast , and any thing I saw in your video I would attribute to being nervous. I just defrosted my freezer last weekend and hurt for two days.

[laglag]

Diagnosed Aug. 2003

Female, age 59 (USA)

Overall movement, rigidity & mood is 20% better th n a year ago.

Tremor & cognitive abilities 5% worse.

Meds: Taking same meds as a year ago. 4 Parcopa (C/L that dissolves on tongue), 2 Azilect, 2 Amantadine.

Supplements: D3, Coconut oil, Protandim, Xocai Chocolate.

Added about a year ago: Emergen C for stiffness/pain

Added a month ago: Krill oil & Align Probiotic

Exercise: Rock Steady Boxing for 9 1/2 years.

[FMundo in reply to laglag]

Lizzy that you ?

[laglag]

In my last reply I said my overall % is 20%, but the Emergen C I stared taking last year for stiffness and pain in my thighs & groin that I had for about 3-4 months improved 95% after about 2 weeks.

[Hidden in reply to laglag]

I only recently started taking Emergen C and suspect it has been a positive result.

[Roseyuk in reply to Hidden]

This is all in the USA,

Why is stuff like this never done in the UK,

BTW what is Emergency C ?

My husband has advanced PD, takes only Madapar ,

7 times per day, 100/25 + 25/12

What else can I do to make his living with PD a little better

He has very limited mobility , needs carers

And now has swallowing problems

Feeling helpless

[Hidden in reply to Roseyuk]

Emergen C is a vitamin powder that you add water and have a 1000mg vit c with other components like 7 b vits and magnesium

"Emergen-C is packed with B vitamins, antioxidants†, electrolytes plus more vitamin C than 10 oranges^. With over 20 flavors, you have plenty of delicious varieties to choose from."

emergenc.com/products#origi...

[laglag in reply to Roseyuk]

I'm not sure what you mean by "What isn't stuff like this done in the UK", but I have done a lot of research myself on supplements & have found a good mix by trial & error. I always talk to my neurologist before taking anything that she has not prescribed. Also, a support group might help you and your husband. Just as with this website, people living with similar situations have a lot of good advice/ideas. Support groups help the patient as well as the caregivers. Some times they have separate groups for just the caregiver which may be exactly what you need??

[Hidden in reply to Roseyuk]

PD as said before, is a designer disease that is, everyone is different. Different symptoms different medications. You have to take it upon yourself to learn as much as possible.

[Hidden in reply to Hidden]

That is why sites like this are invaluable. I am glad I found it. Stay away from chat rooms where everyone is disgussing whats wrong with them with no solutions. If I have a certain problem I want to find some one who has the same problem and what they are doing about it. That is one reason I wanted to alert people to the video of non movement dissorders . I got frustrated with friends and family saying whats wrong with you,? You should be happy that you don't look anything like Micheal J Fox, now that is someone who is realy suffering. Imagine your brain is like an old computer. Its buffering all the time, crashing , locking up you would say this computer is such a blessing,NO. You would get so frustrated with it you would reformat the whole thing and start over or buy a new one. I guess what I am saying that if you don't like the results of your care seek new care.

[Hidden]

does Emergen C have any interactions with Pd meds?

[laglag in reply to Hidden]

I've been taking it for about a year & have not had any side interactions and I got an ok to take it from my neurologist.

[stevie3]

I'm in the UK. I've been taking emergen C about six months (since laglag mentioned it) and find it very effective. I suffer from stiffness in the morning and I take it dissolved in water before going to bed. It's reduced the stiffness about 75% on a good day. I know it works for me because in April, I went on a trip and forgot to pack it and I really seized up. It's cheap and effective. No discernible reaction with my meds (4mg requip, aziclet and Mucuna Puriens).

Overall, I'm actually a bit better than I was two years ago which I attribute to meds, supplements and exercise. I get more tired but I look after myself better than I did before I was diagnosed. This was a wake up call. I have developed a slight tremor.

I'm having a miserable time at the moment - I wrenched my shoulder and it is agony. Nothing to do with PD. Owww!

[silvestrov in reply to stevie3]

You may want to consider taking zinc with your emergen C (vitamin C):

Ascorbate- and zinc-responsive parkinsonism.

ncbi.nlm.nih.gov/pubmed/250...

Evidence of functional zinc deficiency in Parkinson's disease.

ncbi.nlm.nih.gov/pubmed/101...

Zinc supplement boosted serum zinc levels, immunity in older adults, study shows

"Too much zinc (the upper limit for adults is 40 mg/day) can be harmful."

sciencedaily.com/releases/2...

I take 4,400 mg of vitamin C/day and 40 mg of zinc. I have experimented with vitamin C for years and I feel better with daily doses of 4,000+ mg.

[stevie3]

Thanks Silvestrov. I do take zinc - my list of supplements is long, as is the bill!

[silvestrov in reply to stevie3]

Yeah I know about the price of supplements. Since I started taking zinc I have not had a cold or infection. Preciously I was prone to infection & am happy to have discovered zinc.

[rsacdoolittle in reply to stevie3]

That is one of my real concerns...the bill and how much my parents can afford...and how much I can "sneak" in picking up part of the bill...which I do not have much extra funds to do that either. Worry gets us no where though.

[Alleymay1957]

Ihave freezing which is new, but overall i;ve gotten better. I eat healthy, I exercise, I do karaoke (which is a must if you have voice problems) I dance actually stay on the go but get your right sleep. staying active is the name of the game. I have reduced my pills to 4 less per day. and take probiotics every day. I just have this feeling that I;m going to wipe parkinsons out of my body. After all 20 years is long enough for this crap.

cheers and good night and Merry Christmas to all.

Alice (Alleymay 57)

[laglag in reply to Alleymay1957]

Hi Alice. I feel a lot like you, I feel better now than I did several years ago with the exception of some tremors I didn't used to have and I feel like somehow, some way i'm going to drive PD out of me. I also have reduced my meds, slightly. I don't do Karaoke though! I would drive people away with my voice! We do voice exercises in my boxing class though. If you don't mind ne asking, what supplements do you take & what is the name of the Probitic you take? And, what meds? Sounds like you may be about the same age, I'm 59 & was diagnosed at 46.

Thanks!

Debbie

[Alleymay1957]

Hi Debbie,

I will be 60 in February, diagnoised at 40. I take probitic Megaflora, vitamin D. my meds are Sinemet, mirapex, azelecit, and amanadine.

I couldn't sing either but my family is really impressed with my voice and how my range has changed. try karaoke, it's fun as well

cheers

Alice

[flyswat]

No worse, so about the same