Sharing

[jimbo112]

Hello All,  I am a 55 year old male, diagnosed in 2013 after a Dat scan.  Iam left handed and had a slight tremor in left hand for about 2 years prior to diagnosis.  I was a mechanic  at UPS.  Iam now retired and have been approved for Social Security Disability. My symptoms were no left arm swing, shortened left step and some minor balance issues. I started Sinemet 25/100 3x a day in July 2014.  In October 2014, I was increased to Sinemet 50/200 3x a day.  I continued this treatment until Feb 2015.  At this time I eliminated the afternoon dose to see what would happen.  No apparent change.  In April 2015 I stopped the evening dose and in June 2015, stopped all medication.  My next Neuro appt was in Aug 2015.  My Neuro passed away before this appt.  My new Neuro appt was in Jan 2016.  So I was drug free for 6 months.  My Neuro was intrigued by this, and I suggested 3 more months drug free.  He challenged me. Why wouldn't I want to try something that might help.   I started a 3 month trial of Azilect 1mg 1x a day.  This lasted 2 months,  after seeing no positive or negitive affecs.  I saw the Neuro yesterday.  He encouraged me to try again.  So it is Azilect 1mg 1x a day for a month, then adding Sinemet 25/100 3x a day.  I will see him again in July.  I do  not like to take medication, especially if I am not seeing results.  Over all I am in decent shape.  A little over weight and on no other medications.  I try to stay active.  This  is my story so far.   Thanks for letting me ramble.  Would appreciate any and all feedback..  Thank you

[grower]

So I take it that you had no beneficial effects from the sinemet even at the higher dose? I'm a bit worried that I'll be like that too, am currently up to 1 1/2 tabs 25/100 3x day, slowly increasing in order to try and help my bradykinesia but no help yet. Like you I'd rather go without meds and have waited over 2 years since diagnosis but now as an orchardist my slow hands are really starting to be restricting in my work so I want to give it a try. 

[jimbo112 in reply to grower]

thank you for your reply. I seemed to have no beneficial effects that I could see.  However,  it is really hard to tell.  That is part of my confusion.  I have also slowed.  LSVT Big therapy has helped

[grower in reply to jimbo112]

Also very happy with LSVT BIG, I do the movements each night and on timed tests I'm still better than I was when I first did the program over 6 months ago

[jimbo112 in reply to grower]

Nice,  Keep up the good work

[Beckey in reply to grower]

Is that a class? A method of movement? Something you practice in a group? I hear nothing but raves -- I'd like to learn about it.

[jimbo112 in reply to Beckey]

there are videos on youtube

[grower in reply to Beckey]

It's Lee Silverman Voice Training (LSVT) BIG. She developed a technique to help people speak louder and then used the same idea of amplifying movement to help PwP regain better use of body. The idea is to re-train the brain to remember pathways, in my case using my left arm. An exaggerated arm swing pushed to the fullest and practiced can end up with a more natural smaller use. This explains it better than I  youtube.com/watch?v=cV8FjbC...(Not working as expected?)

[hopedope in reply to grower]

I really liked this video!  I still have to do the LSVT BIGS training programs--I have been diagnosed for a year since February.  I think it's time though my neuro and movement disorder neuro both haven't urged me to do it yet. 

[grower in reply to hopedope]

Definitely time, earlier the better I think. I had to hunt down a physio trained to teach it myself. 

[Beckey in reply to grower]

Wow! Great stuff. And what a beautifully shot film!

[Emily89 in reply to jimbo112]

LSST BIG THERAPY IS THE GREATEST.

[M_rosew]

At diagnosis three years ago I was prescribed Azilect once a day, as a dopamine preserver. I feel it improved my mood and enabled me to concentrate better on tasks and movement. The tremor can be embarrassing but it doesn't worry me too much.

Now my walking has slowed down enough to be a nuisance, and I've been prescribed 2x Half Simenet daily, to increase to 3 daily after a month. My Neurologist offered this, he didn't insist. 

So the packet of pills is on the shelf, and when I've read all the instructions I will start taking them!

[jimbo112 in reply to M_rosew]

thanks for the reply.  if you don't mind me asking... how old and what is your level of activity

[Hidden]

I have similar experience.

[jimbo112]

thank you for replying.. what meds are you on now?

[Hidden]

Not on meds. Tried sinemet and at other time, ropinerol. No effect. Then my neurologist said those meds not for tremor. Since I did prefer not to take prescript meds for tremor, or I said I wanted to take meds as needed. Mostly for when I try to sleep at night and when the tremor keeps me awake. He recommended 100mg of Benadryl just before bed.

[jimbo112 in reply to Hidden]

How long have you been off meds?  Do you have symptoms other than tremors?

[Hidden in reply to jimbo112]

3+ years. I only these last three months tried Parkins's meds Each for about three weeks and separate..All symptoms; I have tremor dominant form. Little or no gait or balance problems

[12stargate]

jimbo112  ; Dear new friend; I am curious. Why did you go back on meds since you were doing so well off meds?

Meds do not cure anything, it just masks  the symptoms.

Lovingly, Eva G.

[jimbo112 in reply to 12stargate]

Doing so well off meds is not an accurate description.  I was challenged with was I settling for a lesser lifestyle by not trying meds again.  After praying and talking with my wife, we decided to give meds another try.  Time will tell

[12stargate]

jimbo112  

Thank you! Now I understand

Prosper and do well.

Eva G.

[jimbo112]

thankyou

[Bailey_Texas]

Hello jimbo

I am 62 10 years DX 

I take a total of 5 50/200 er and 5 25/100 Simenet a day along with 1 6 mg requip and

 1 azilect with very few side effects none that cause me any problems. This keeps my pd almost completely under control.

Along with the meds i do Crossfit at least 5 times a week.

I do believe that  rx meds and exercise can get the job done it works for me i hope you can find a regiment that works for you.

Keep trying to find that balance for you.

[grower in reply to Bailey_Texas]

What is "er" ? As in 5 50/200 of them

[Bailey_Texas in reply to grower]

extended release 

[jimbo112]

thankyou.  when did you start meds and how has that progressed.  did you ever doubt if they were effective

[Bailey_Texas in reply to jimbo112]

Stared requip when DX worked good for 9 years. Were still working but not good enough for me. Was having too much down time. So new DR. put me on Simenet Tryed different types and doses and have been doing great for the last 4 months on this dose. I  am better now than 10 years ago when dx. 

Always thought they would work. I believe and trust my DR. It took a year just to get in to see him. He works at a research Hospital. 

Only problem i have is lack of sleep.

[ryanJames1]

Yep I worry the meds have just as many side effects as the PD! I'm med free and managing with my symptoms can't see meds would improve my situation at this stage. Eating well, Chinese herbs and exercise 

[enjoysalud]

I am a caretaker for a 54 yr old son who was dx with Datscan Aug, 2015.  symptoms appeared March, 2014.   At his request he was started, Sept 1, 2015,  on Azilect.....very little improvement after 14 weeks. at 14 weeks  Dr added L-Dopa (generic of sinemet), 2 25/100 3X daily, Nov 17, 2015.  Lots of improvement, but still difficulties.  He requested to be taken off Azilect after research indicated that two meds might cause more complications.  He has been only on L-Dopa for past 30 days (30 days completely off Azilect).  HUGE IMPROVEMENTS....better balance, better cognitive focus, better posture.   I believe there is no ONE formula for all. With cooperation from Dr and courage to try a person's body gives feedback.  He takes a 3 mile walk each morning and 20 minute stationary bike 3X weekly.  I believe that your belief system, along with actual effects of medication, has a great deal to do with success.  If you believe, usually it works. If you don't believe usually it doesn't work.  Good luck  

[jimbo112 in reply to enjoysalud]

Thankyou for the info and the encouragement.  The compassion you show is inspiring.  Thanks again

[Beckey in reply to enjoysalud]

When you say L-dopa, do you mean levadopa only? No carbidopa?

[enjoysalud in reply to Beckey]

Hi Beckey, I meant carbidopa/levodopa (c/dopa.....better abbreviation?) but too lazy to write it all out.  That's why I stated generic of Sinemet.   I wanted to differentiate between the generic and the original brand name.  My son  takes the generic.  Today was 31 days without Azilect.  I think he needs an increase on his C/dopa to make up for removing the Azilect.  Wednesday he is having cataract surgery.......just turned 54 years old. His first symptoms were double vision and slurred speech....progressed to other symptoms.  The MD thought he might be able to bring down the strength of his prisms.  I hope so.    

[racerCP]

Hi comma I am completely with you on not taking medications if they do not help your symptoms. From what I understand no medications are geared toward cure. Azilect however being an MAO B inhibitor had originally been touted as a possible preserver of what dopamine you have but that theory has been debunked. I am 75 and diagnosed two and a half years ago. I have recently started on medication, selegiline, also an MAO B inhibitor 5 milligrams once a day and last week started neupro patch 2 milligram patch to be changed daily. I do see a slight Improvement in the intensity of my tremor, but I see some things getting a bit worse like stiffness and pain. I don't know whether that is just the natural progression of the disease or has something to do with the medication. I'm very active and race walk about 4 or 5 miles a day besides taking various exercise classes. Stay strong and good luck.

[jimbo112]

thanks for the info..trying to do the right thing.  keep working

[Emily89]

I was diagnosed 3 years ago this week.  Taking 1 mg of Azilect and Dopamine Bean from health food store.  Feel great and riding bike 1 hr a day.

[jimbo112 in reply to Emily89]

Thanks for sharing..  What are your symptoms and how have they changed in the  past 3yrs

[Emily89 in reply to jimbo112]

My symptom s were tumors and falling now and then back when I was diagnosed.  Now I have no symptoms.  Took LSVT classes and helped my walking.  Also take 1/2 half teaspoon of ground ginger spice twice a day in each of my 36 oz glasses of water.  This has elevated all my arthritic pain.  A miracle.