Here is my info from catlou: I think i... - Cure Parkinson's

Cure Parkinson's

25,510 members26,824 posts

Here is my info from catlou

Catlou profile image
5 Replies

I think i posyed this in the wrong place but here are my facts: thanks to everyone who replied. this site is amazing. as for my personal life i was a computer specialist/tech for a large school district here in the U.S, almost 17 years. i was in charge of three schools buildings. All the computers, laptops, ipad carts access points, and staff. i walked, lifted and did a lot of heavy work. My supervisor was concerned about my condition as it took over 1 year to get diagnosed with PD. I was walking slow, falling/balance problems and dragging my right side. It was decided that i go out on short term disability which is one year. they have to keep my job (union) available for me till then. that is 66% of my pay. needless to say that has created many financial issues as i am a single mom. My back also started really hurting so saw back surgeon who i know and he referred me to neurologist. one year later they dx PD. i also go to Jefferson hospital in Philadelphia and see a movement disorder specialist. started with neupro patch but that did nothing and kept falling off. started CL about 3x a day 1pill but it started to wear off too soon. tried entacapone made me feel real bad and jittery . so i went to cl controlled release to make it last longer but the wait time to get started was bad so now on 1/2 pill of each 4x a day. movement doctor added azilect but that really didn't do anything so i only take 1/2 in the morning for neuroprotective possibilities. i take NAC twice a day and isradapine channel blocker for my blood pressure switched to this as it is in clinical trials for PD. i have no tremors only slight occasionally while medicine starts to wear off. also my right side starts to drag and hard to walk. i feel it coming on around my mouth and my right lip looks like a stroke but had all kinds of tests everything else is negative. my balance is so bad that i cant do walking as my right leg is impaired even had a achillies tendon tear. i don't know what else to try. my doctors are very well knowledged. and listen to me. they both say i am an exception to regular PD and are open to trying different things. two years later i was back at the back surgeon ho is now sending me to have a lumbar facet joint injection (nerve blocks) and if that works they will do them with heat which last 3 years or more. once again - thank you for all your replies. i think i need to get moving more too.

Written by
Catlou profile image
Catlou
To view profiles and participate in discussions please or .
Read more about...
5 Replies
ronn profile image
ronn

Catlou, Hopefully the earlier responses will catch up with this post. Regarding the lumbar nerve blocks, I passed them up, opted for Lumbar surgery which was only temporarily successful. The nerve block injections now sound like a good idea. ..........You are fortunate to have a good relationship with your employer.

Wishing you well,,,,,

I often find that putting your thoughts down in writing like you have above helps you see your own picture more clearly. Feel free to post a rant, complaint, question or just to say hi, this is a good place . We are in the same boat but we kind of teach each other to swim. It will not be easy, ( its not called Parkinson's inconvenience) but hang tough, with a little help from your friends and you helping them, you will be fine. There are worse situations.

I just want to make a point that that I have made many times before. Happyness, is a state of mind and you can be happy if you have a mind to. It sounds crazy with the pain and problems but it is true.

Be Happy

park_bear profile image
park_bear

C/L controlled release is the right stuff for PD. What dosage are the pills you take 1/2 of 4x/day?

While MDs are the first resort for PD, they should be the last resort for back problems. Backs are one of the naturally troublesome places in the human anatomy and need to be tended to. I have a yoga routine I do first thing every morning to stretch out all those tight places in my back. If I neglect it my back lets me know. If during the day I feel discomfort or tightness I do some standing stretches right on the spot or at the first opportunity. It is also important to be aware of our posture during the day and how our back is responding. We must not attempt to maintain an uncomfortable posture for extended periods.

It is easy for vertebrae to get subluxed as a result of falls or bad beds. A good chiropractor will put those right. Good chiropractors use some form of testing to locate subluxations. Muscle testing works because subluxations pinch the nerves and cause muscle weakness.

HTH,

P. Bear

Catlou profile image
Catlou

Tomorrow

Catlou profile image
Catlou

Tomorrow is one year at midnight. Ifor the Central Bucks School District. PSERS

You may also like...

Did my 'Startle Response' affect my PD Examination?

steps before regaining my balance. He would expect 7 steps for a PWP of 10 years! He became very...

Effects from going off of amantadine

50-200 at bedtime. Back in August of this year doctor put me on amantadine starting with 2.5 ml. I...

My Neuromodulation Neurorehab Stack.

stimulation may improve balance and function in PWP. This has improved my posture, balance and...

Uridine - from my experience..

Just be patient to find the dose you need. I started with 50mg/day, adding another 50mg every 3th...

Has anybody had dyskinesia symptoms from Sinemet?

getting worse, and my driving is starting to be affected with right foot tremors. I need to make a...