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Michael Walker

Newly Diagnosed

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Hello everyone!

 

I recently was diagnosed with YOPD and I have been exploring information and looking for people with similar issues for support and to be supportive. It has been a difficult two weeks, but things have shown improvement. So here is my story!

 

I am a music teacher who teaches High School Band & Choir. I am 43 years old and started noticing things after my students would say I never change facial expressions a few year back. I would always move my fingers at rest but I always attributed that to my performing since it was right hand that did most of the work. I also had issues with concentration, anxiety and depression which was really weird for me. I had noticed my rigidity also, but just felt that just me getting older. When the fingers and then hand started shaking consistently is when my wife and I started to get concerned.

 

I went to the doctor and he stated that it was something he noticed as parkinsonianand referred me to a neurologist. After a lengthy exam and many tests I received the diagnosis. I was given a prescription for Sinemet 25/100 and started by taking 3x daily. I had great movement not long after starting the medication, but it has really been hard adjusting. I have had issues with conducting the band and staying focused. I'm not sure if this is the medication or the PD. I do have much more range of motion and the tremor is minimal so that is a plus. I take my mess at 6:45a/1pm/9:45 pm, and not sure if that is good or not. Judging medication times has proved to be confusing.

 

Well, that's my story up till now! I have enjoyed reading the posts on the forums and look forward to being a invested part of the PD community! I look forward to talking with you all.

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Welcome Bandguy, My story is similar to yours. Only difference is I am 5 years younger and not a music teacher. If you are still having symptoms with the meds you may want to move them closer together. I found that 5 hours in-between dosing is the best for me. 

 

Unfortunately you will find that it take more concentration than it used to, to do things. I have had to use yellow sticky notes as my short term memory and had to slow down and really concentrate when multi tasking. Just one of the many gifts from this disease. 

 

Sounds like you are on the road to acceptance. It takes time. Took me the better part of year. But I now see my future as bright and full of different possibilities. I just had to adjust my thinking.

 

Blessings

Adam

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Hello Bandguy, 

 

Glad you found this forum.  It will take time for you and your doctor to experiment with your medication to achieve optimization.  Adam is right that the non-motor symptoms such as concentration, multi-tasking, apathy, fatigue, etc. are less likely to respond to the medication, however, I have found that when I'm doing well on the meds, those other issues seem to be a little easier to manage.  Both of my sons were in the high school band so I have some idea how difficult your job is - even in perfect health, I wouldn't last a week in your shoes.  Best of luck and keep us posted.  Gardener

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Hello Bandguy,

 

Welcome to an amazing group!  If not for the folks in the group pulling me up, I would have been gone years ago.  So when you need to talk we are here.  I look forward to being here for you.

 

Jaxs

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Hey bandguy...welcome!

You may want to ask your dr about adding Azilect (I can hear a collective groan out there). Most people agree that it doesn't do much for symptom relief, but I DO believe it helps a bit with cognition and motivation.

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Welcome. My concentration and overall well-being got better after being on C/L for a few months. My Dr suggested to evenly space my 3 doses in my waking hours. I take mine at 5:30, 11 and 5. That allows me to take my meds on an empty stomach. Sleep and exercise are extremely important. Take care.

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Bandguy welcome to the club. Sorry that you have found yourself here, but it could be much worse.

 

It sounds like you started out with a good group of doctors, I am sure it seemed like a long time getting answers. There are many here that has gone for years before being diagnosed.

 

My suggestion would be what ever treatment you take always listen to your own body. Your pd is yours and you have to choose the best options for you.

 

Get a good mds if you don't have one.

 

Never be afraid to ask questions here. You will receive all kinds of suggestions and opinions.

 

Just remember your pd is yours and if something isn't working for you change it.

 

Good luck

Kevin

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Where are you located?  No address needed, just city, or even general region of a state is good enough.

 

In addition to the advice about the timing of meds throughout the day, keep in mind too to maintain separation from protein consumption.  Taking meds at least 30 minutes before eating protein or at least 1 hour after eating protein will help with med absorption.  There's a very narrow window within the small intestine to absorb levodopa, and that same section is also where protein gets absorbed.  If there's a lot of protein going through that part of the intestine the levodopa won't get absorbed before passing by, and then you don't get the benefit of the meds.

 

Second the recommendation to get an MDS if you aren't already seeing one.

 

Re: Azilect.  I had a bad reaction to it.  Caused confusion/short term memory loss with it, and even started to hallucinate.  Mind you I think I might be the only one on this board that reacted like that, and several folks on here are very happy with Azilect.  So I say this only to give caution about trying various meds.  Try them if your doctor thinks they're worthwhile, and your own research agrees, but don't take meds just to take meds or just because your doc said so.  All PD meds have the possibility of undesirable side effects.

 

Anyway, welcome to the group.  Sorry you needed to find us.

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Thank you all so much for your support! I am currently in Barrow, Alaska which makes things difficult as there are no Neurologists here. I am moving back to Chico, CA in May once my contract is up here and will be looking for a MDS soon as I get there. I am walking at an indoor track and stretching. The non-motor symptoms are what are really making me nervous, especially being a teacher.

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I would have to think that Alaska is NO place for a parky to live. My PD feels worse when a cold front comes thru here in Florida, and that just means 45 degrees...

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MM is right with the remark on Azilect. I have been on it as Monotherapy for 10 months and the benifits work for me.

 

You need to try it all....see what works for you...we are all different!!

 

Cheers

Discovery

Edited by Discovery

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I am also very new, and was a band geek myself.  I have yet to see a Parkinson's or Movement Disorder Specialist (MDS), but will be seeing one soon.  Range of motion can be helped with a Physical Therapy program called LVST BIG...google.  I find multitasking is hard, something has to drop out.  For instance, I can walk pretty normally now that I've been doing BIG, but if I am carrying something or do something to pull my attention away from walking, I get the ole Parky shuffle again.

 

Anywho, from what I've seen in my VERY limited time here, we all have different Parky stuff, hence the need for a specialist.

 

My faith in Christ has kept me going!  Keep on moving!

 

Steve, Dude, bakestein etc

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Hello my name  is tom and I am 61 yrs. old. I worked as a machinist and worked allot with alum., plastics, nickle, solvents and so on. Also had played contact sports and had many injuries through the yrs. But for me that all in the past. I am glad there is sinemet. With it I function much better. Less Stiffness, Cramps, Pain, and Walking much improved. I only had a small tremor. But BP problems, constipation, vivid dreams, heart arithmias, were there as well. Exercise and stretch (pool) and For stooped posture the low back chair help. Depression is worse if you consentrait on your negatives. (IMO) Enjoy the young people you help.

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Good Morning Tom. Electronic Engineer by day,   home shop machinist at night. Still cutting chips on a LeBlonde 13" Regal and my Index 555 milling machine.   Keeps me active, but I have to admit when going for that last 0.005" pocket pass a CNC would be nice.   I'm a few years younger, but still working and staying active.   Huge fan of Rock Steady Boxing, which is both good for exercise and social.  

 

Irony is I still want to down size the house, but seems like kids are moving home and I didn't jump fast enough. Then again having a strong kids around when I need a 75# rotatory table moved onto the mill is a good thing!

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Hello Tom even on the CNC's final was hand sand for the bearing push. But what is great was you could put in the taper moves along the shafts. If you get a cnc you will have to block the switches in order to open the door to sand. But I as you know Machining is hell on stooped posture. Sorry I didn,t answer sooner the pool opened at 8 and at that time I have it all to myself. Have a nice day and thanks for sending us your Texas warm weather. 70 here today. 

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