Another Face With PD: Hi there! My name is... - Cure Parkinson's

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Another Face With PD

justhavefun2 profile image
45 Replies

Hi there! My name is Diane. I have been monitoring this blog for about six months and being continually impressed by the diligence to gather information and the positive way you support each other. I finally have an official diagnosis so I wanted to “officially” say hello and thanks for making the beginning of this journey a little bit less scary. I have Bradykinesic Form Parkinson’s Disease.

If you have any suggestions for me I would be most grateful. I know John Pepper suggests fast walking (Great idea! Hope I can soon!), but I am currently nursing a bad back. I participate in water aerobics 3 times a week.

Anyway, I very much look forward to interacting with all of you more closely.

Best wishes for a pleasant evening.

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justhavefun2 profile image
justhavefun2
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45 Replies
christymw profile image
christymw

Hi Diane, nice to "meet" you!

There's a lot of information, sharing, and advice to discover here!

Have a great day.

justhavefun2 profile image
justhavefun2 in reply tochristymw

Hi Christy! Nice to meet you as well! Thanks for saying hi! 😀

Enidah profile image
Enidah

Welcome! I don't remember how I found this site but I'm always glad I did.

justhavefun2 profile image
justhavefun2 in reply toEnidah

I was searching for PD information and stumbled across it. I am thankful, too! Nice to “meet” you Enidah!

christymw profile image
christymw

Just curious when you say "bradykinesic form" does this mean you don't have tremor as a dominant symptom? I am also young onset, was dx'd at 39 with symptoms recognized since early 30s. I primarily suffer with imbalance and gait disturbance (PIGD).

justhavefun2 profile image
justhavefun2 in reply tochristymw

That was my official diagnosis from the movement specialist on Tuesday. I don’t have a tremor, I also don’t have any swing in my right arm. I limp on my right side. I also have micrographia. My typing speed has decreased from 100 wpm to, likely, 50 to 60 wpm. I just started meds yesterday and I am looking forward to better days ahead. I am 57... Currently I am experiencing severe back pain. I am anxious to get that fixed so I will be able to step up my game at the gym!

How many years since you were diagnosed? Do you work? Any advice is so very welcome.

ion_ion profile image
ion_ion in reply tojusthavefun2

Hi!

For how long do you have the symptoms? What meds did you start to take?

justhavefun2 profile image
justhavefun2 in reply toion_ion

Hi ion_ion! Thanks for asking!Symptoms likely began about two years ago and I am taking cardopa-lopa (my funny name for sinemet or however you say or spell it)! I am taking 1 tablet in the morning with a “goal“ to be up to 8 tablets in 2 months. I hope to get away with less medication, but we’ll have to wait and see...

ion_ion profile image
ion_ion in reply tojusthavefun2

I have symptoms for about 2 years even I think it started earlier than that. I do not take any medication yet even the doctor prescribed 3 25/100 c/l per day. I have a slight tremor in RH and a little freezing on right side (leg and hand) which get down after exercising. So you take one pill per day and have to get to 8 per day? Do the med helps you feel normal, like before?

christymw profile image
christymw in reply tojusthavefun2

I was dx about 11 years ago and I had dbs 5 years ago. No longer working. Best advice?? Keep a positive attitude and stay active. Don't let the difficult days bully you into submission!

justhavefun2 profile image
justhavefun2 in reply tochristymw

Thanks so very much! You give me hope.

ion_ion profile image
ion_ion in reply tochristymw

Hi!

For how long do you have PD? Is the Sinemet helping you?

justhavefun2 profile image
justhavefun2 in reply toion_ion

Hi ion ion! I was just diagnosed 2-13-18 and started medication yesterday, so it is too early to tell. I did a trial of Sinemet last summer (1 tablet 3x a day) with no effect. The docs are hoping that ramping up to 2 tablets 4x a day will be helpful. How about you? Please tell me about your diagnosis and meds?

ion_ion profile image
ion_ion in reply tojusthavefun2

If you scroll a little higher you'll find info about me.

justhavefun2 profile image
justhavefun2

I wanted a firm diagnosis before the doctor started to mess with my brain chemistry. I am hopeful that it will help. Where are you from? I “hear” an accent in your typing! 😎

ion_ion profile image
ion_ion in reply tojusthavefun2

I'm from Michigan and everyone has a typing accent here.

Cbgs profile image
Cbgs

Welcome

although I wish I didn't have to welcome u .... but if u have PD, this is a great place to be.

My advice is to live every day to its fullest ... eat right.... exercise !!!

( now if only I could follow my own advice)!?

Be well

C!

justhavefun2 profile image
justhavefun2 in reply toCbgs

Thanks Cbgs!!

Motherfather profile image
Motherfather

good afternoon darlin,im john..well if you have a bad back forget the fast walking the swimming is better but a good walk every day,maybe 5 kl.just be carful of your back,i have a massage machine they are good and cheap,they help counteract the shaking in the arms and leg ill send you a video if you want,regards john

rebtar profile image
rebtar in reply toMotherfather

What kind of massage machine?

Motherfather profile image
Motherfather in reply torebtar

youtu.be/RNjU7wCv2iY

justhavefun2 profile image
justhavefun2 in reply toMotherfather

I’d love to see your massage machine!! Please do tell!

Motherfather profile image
Motherfather in reply tojusthavefun2

youtu.be/RNjU7wCv2iY

justhavefun2 profile image
justhavefun2 in reply toMotherfather

Wow! Cool! Thanks for sharing!!

Motherfather profile image
Motherfather in reply tojusthavefun2

you can buy all that in china for about 20 dollars.check out ali express.

Toogood profile image
Toogood in reply toMotherfather

That massage machine sounds good. How does it work..

Toogood profile image
Toogood in reply toToogood

Watched the video..thanks

rebtar profile image
rebtar

Hi Diane, Welcome! You've come to a good place, I've checked out a few PD sites and this is my favorite, for the information and the companionship.

justhavefun2 profile image
justhavefun2 in reply torebtar

Thanks for the welcome rebtar!!

justhavefun2 profile image
justhavefun2

That is my Movement Specialist’s prescription.

Motherfather profile image
Motherfather

youtu.be/RNjU7wCv2iY

Bolero profile image
Bolero

Hi there Diane, I've only been here five seconds myself, in the grand scheme of things, but it's always good to say hello to someone who wants to say hello too.

So hello Diane.

I've already learned a lot from the brief exposure to the site that I've had. I think you've come to a good spot for thinking through issues and maybe solving some problems as well.

ddmagee1 profile image
ddmagee1

Welcome, Diane! Actually, I get most of my support from this blog, because only people who have PD, and can share their experiences, seem to fully understand the implications of what it really feels like to actually go through the daily struggles. This is especially true, once PD symptoms have advanced from a mild stage to a more debilitating stage, where, nearly every day one has a struggle of one sort or another. So, anyway, I have gleaned wonderful information about PD and living and adjusting and what medicines work well etc., by interreacting with others in this forum. Many positive ideas have come from this. I’m sure you will, also, find this to be a valuable resource for you, in your journey of “life as a Parkie”. We are here to help and support each other!😀

justhavefun2 profile image
justhavefun2 in reply toddmagee1

Thanks, ddmagee! I have so much respect/compassion for those with more advanced symptoms. My prayers are with them...

Waiyanwong1964 profile image
Waiyanwong1964

Hi any intensive exercise will slow down the progression. As yiu have mentioned, John Pepper’s fast walking, rock steady boxing, intensive exercise bicycling, dancing etc are all beneficial. My bradykinesia improved with Rock Steady Boxing. Adding Sinemet will also improve your bradykinesia.

Charles

justhavefun2 profile image
justhavefun2 in reply toWaiyanwong1964

Thanks Charles! I love to exercise, so PD gives me an excuse to indulge more time bring active. I also love pizza...need to change my eating habits...easier said than done! Thanks for your great advice!

justhavefun2 profile image
justhavefun2

Thanks Bolero...so our journey begins...

Kia17 profile image
Kia17

Hi Diane

Welcome to the PD forum.Stay active, be positive, eat organic and plant based foods , do cycling ,swimming and Yoga if you can and enjoy your life. Share your thoughts and ideas here.

Kia

justhavefun2 profile image
justhavefun2

Thanks so much, Kia! I am seeing a trend in great advice! All the best to you!

ddmagee1 profile image
ddmagee1

Water aerobics is excellent for many people with PD, according to medical professionals I’ve talked to and my own experience has proven it to be a fact.

moonsake10 profile image
moonsake10

A real nice Texas hello to you!

justhavefun2 profile image
justhavefun2

Hi moonsake10! Thanks so much for the warm greeting!

Especially appreciated when the nor’easter is blowing at 60mph outside. Possibly, you will hear about us on the National weather... 😉

I will look forward to “seeing” more of you!

Painty23Painty profile image
Painty23Painty

Hi Diane, welcome , I only arrived here in the past six months and have found it full of helpfull words born of trial and error, iv just started on requip a month ago ( reluctantly)

justhavefun2 profile image
justhavefun2 in reply toPainty23Painty

Hi Painty!

Thanks for saying hi! 😀

I started Sinemet last week, but I had a bad reaction to it. My brain blanked out for a bit, so I am doing some NUCCA chiropractic to start and want to go the wholistic route and see where that takes me.

How are you doing with the Requip?

Painty23Painty profile image
Painty23Painty

Hi I’m not sure weather it’s the Gyro Kinetics or the requip but I have been moveing a little more freely when not stressed , I gave myself a year of natural therapy only but it was affecting my work (I’m 56 so can’t retire yet) still committed to natural healing tho! Best wishes

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