Jump to content


E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter
Photo

New Member


  • Please log in to reply
14 replies to this topic

#1 LarryH0123

LarryH0123

    Advanced Member

  • Members
  • PipPipPip
  • 104 posts
  • LocationAiea, Hawaii

Posted 24 November 2012 - 08:01 PM

Aloha!
My name is Larry Hales and I live in Aiea Hawaii. I have had symptoms (tremor and rigidity in left arm and leg) for about 2 years. Have some balance issues also but minor at this point. I was diagnosed on 11/21/12 by the MDS I have seen twice. I saw a neurologist three times before I learned about MDS as an option. I am currently on Azilect 1mg. and Rotigotine Neupro patch 6 mg. each daily. My MDS also referred me to PT which has been a major help in addition to the meds. I am very early stage and am grateful for the level of functioning i have now. Thank you all for being here. I have been lurking here for a couple of months and decided to join in once diagnosed.

#2 Ken_S

Ken_S

    Advanced Member

  • Members
  • PipPipPip
  • 115 posts
  • LocationNorthwest Wisconsin (Lake Nebagamon)

Posted 25 November 2012 - 07:08 AM

Aloha Larry and welcome to the group. I hope you find the topics discussed on these forums useful, I know I have.

Ken

Improvise, Adapt and Overcome


#3 jb49

jb49

    jb49

  • Members
  • PipPipPip
  • 1,921 posts
  • LocationOntario

Posted 25 November 2012 - 07:51 AM

Dear Lurking Larry,

Welcome aboard. Sorry that you got PD. For what it is worth my advice is this:

Get a good doctor ( check, you have a motion disorder specialist)
Establish a good drug routine that works (check, you are on prescribed drugs)
Exercise as much as possible, it replaces a lot of drugs I think
Maintain a good frame of mind and positive thinking, don't get down on yourself.
Invite us all to your house for a party. This last suggestion may not do much for you but it will excite the rest of us cause who doesn't want to go to Hawaii?

I do wish you the best of luck to you Larry in your fight with PD. and I encourage you to stay in touch.
Don't be hard on yourself, try your best and be strong!

#4 LarryH0123

LarryH0123

    Advanced Member

  • Members
  • PipPipPip
  • 104 posts
  • LocationAiea, Hawaii

Posted 25 November 2012 - 10:15 AM

Thanks for the welcome and the advice. As far as exercise, I am currently waking 30 to 45 minutes per day and spend a little over an hour on PT at home. My wife and I go hiking and I go sailing and snorkeling with a friend on occasion. If you guys are coming to visit you need to come within the next 3 years before I retire and move back to the mainland.

I used to be an avid motorcyclist for 27 years but the PD in my left hand made it too risky to continue. My last three fingers would lock open and I couldn't pull the clutch lever in. After about three of those incidents I sadly conceded. This is the first time I haven't had a bike in 22 years.

#5 Drummergirl

Drummergirl

    Advanced Member

  • Members
  • PipPipPip
  • 205 posts
  • LocationWhite River Jct. Vermont

Posted 25 November 2012 - 06:33 PM

Welcome, I am a newbie to this site as well. But not a newbie to PD.
I am curious about your using the patch. They have not worked well in previous attempts according to my neuro. It was removed from the market a year ago or so.
Do you ave any nausea with it? I guess that has been the biggest problem in the past.

Good luck and stay active physically and mentally.


#6 AnthonyB

AnthonyB

    Advanced Member

  • Members
  • PipPipPip
  • 95 posts
  • LocationNC

Posted 25 November 2012 - 07:04 PM

Welcome Larry, glad to have you!

#7 LarryH0123

LarryH0123

    Advanced Member

  • Members
  • PipPipPip
  • 104 posts
  • LocationAiea, Hawaii

Posted 25 November 2012 - 07:17 PM

Welcome, I am a newbie to this site as well. But not a newbie to PD.
I am curious about your using the patch. They have not worked well in previous attempts according to my neuro. It was removed from the market a year ago or so.
Do you ave any nausea with it? I guess that has been the biggest problem in the past.

Good luck and stay active physically and mentally.


Thanks for the welcome all. I started out with the 4 mg. and was very sleepy the first 24 hours, too drowsy to drive. But the 4 mg. didn't seem to help relieve the rigidity any if at all. After one week I started on 6 mg. and had two separate very brief (couple of minutes) periods of nausea and dizziness but none in the past 3 months. The rigidity has improved greatly (I suspect at least partially to PT). The tremor has decreased in frequency but not intensity. My doctor told me the Neupro had been taken off the market and back only recently. She was able to provide me with a card from the manufacturer that allows me to pay only a $10.00 copay for 30 day supplies up to 12 months. That saves me $240.00 per year in copays! :razz:

#8 jb49

jb49

    jb49

  • Members
  • PipPipPip
  • 1,921 posts
  • LocationOntario

Posted 25 November 2012 - 09:56 PM

Hello Drummergirl, welcome to you too. Hey Tony, are you going to go to Hawaii with us to Larry's house. He is in Hawaii, you are from Jersey, and I being from Canada could translate the New Joisy accent and slang for everybody. So anybody fly a plane?
Don't be hard on yourself, try your best and be strong!

#9 AnthonyB

AnthonyB

    Advanced Member

  • Members
  • PipPipPip
  • 95 posts
  • LocationNC

Posted 27 November 2012 - 12:07 PM

Hello Drummergirl, welcome to you too. Hey Tony, are you going to go to Hawaii with us to Larry's house. He is in Hawaii, you are from Jersey, and I being from Canada could translate the New Joisy accent and slang for everybody. So anybody fly a plane?


Just to put a spin on things i'm a Brit transplanted to NJ so my accent would throw you all a curve ball.8-)

#10 jb49

jb49

    jb49

  • Members
  • PipPipPip
  • 1,921 posts
  • LocationOntario

Posted 28 November 2012 - 08:04 AM

Hi Tony, that would be a surprise to my ear. Hope you have a good day!
Don't be hard on yourself, try your best and be strong!

#11 Vanillab1027

Vanillab1027

    Advanced Member

  • Members
  • PipPipPip
  • 166 posts
  • LocationJacksonville, FL

Posted 28 November 2012 - 08:27 AM

Welcome, Larry!

#12 LarryH0123

LarryH0123

    Advanced Member

  • Members
  • PipPipPip
  • 104 posts
  • LocationAiea, Hawaii

Posted 01 December 2012 - 10:54 AM

Thanks again for the warm welcome. I am enjoying the forum. It is good to know you all are only a click away. I went to PT yesterday and my therapist is working on strengthening my left leg so I can get in and out of the car easier. I have gotten to the point where I have to open the door, swing both legs out, and then stand up when both feet are on the ground. She thinks she may be able to get me back to getting out with one leg on the ground again.

#13 Beau's Mom

Beau's Mom

    Advanced Member

  • Members
  • PipPipPip
  • 1,231 posts
  • LocationSeattl, WA

Posted 01 December 2012 - 12:01 PM

Hey Larry,

When I went to PT a little over a year ago, they taught my that my arm swing (gone since 1996) can actually come back--it just takes persistent practice. So there we were, hosting at Washington State park, with my husband holding one end of a pair of ski poles and me the opposite end. We traveled round and round the large parking lot. With every step of my right foot, he pushed my left arm forward; with every step of my left foot he pushed my right arm forward. After about 6 weeks of practice, it became natural for me to swing my arms again!

Keep practicing whatever they give you. It works if you work it!
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

#14 cberns

cberns

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts
  • LocationWolcott, CT

Posted 26 January 2013 - 02:33 PM

Larry,

How long did it take foe the 6mg patch to really help your stiffness? I just titrated my dose up from 4mg today.

Thanks.

#15 LarryH0123

LarryH0123

    Advanced Member

  • Members
  • PipPipPip
  • 104 posts
  • LocationAiea, Hawaii

Posted 27 January 2013 - 10:55 AM

Aloha cberns,

I had been on Azilect for a few months prior to starting the patch and am still on that one also. That being said, I noticed a difference in rigidity in the first couple of weeks at 6 mg. I was also in physical therapy at the same time which I found very beneficial. I'm not sure how much of the improvement I can credit to the Neupro and how much to pt. I have noticed an increase in rigidity recently and will call mds next week to see if she wants to bump me up to 8 mg. or try something new.




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users