I know I haven't been around in awhile. I've been trying to "deal" with my PD and ignore it the best I can. This is a rough road to follow, but what else can I do at this point?

I came back from another storm chase about two weeks ago. We covered around 5,600 miles in 12 days. It was quite the trip and I did pretty well for most of it until the last Thursday of the trip. On that day I was quite stiff and had trouble with my balance. I ended losing my balance and falling when I got out of the van at a rest stop. I was lucky that someone was behind me and caught me as I went backwards. That same day also presented a problem when I put my luggage in the back of the van. There was a slight slope, which I was quite aware of, but when I carried my luggage, I got pulled backwards by the weight of it, and couldn't keep from falling backwards. I didn't fall, but I looked really foolish.

Anyway, travel is both a good and bad thing. The van ride wasn't so bad, but flying sucks to put it lighly. The long walks to the gate and the overall stress of the ordeal I found quite exhausting.

On the piano front, I'm doing quite well although I've noticed a big drop in my abilities from 3 years ago. The music is good for my soul and for mobility particularly with my hands and arms. If only I had what I had then now, and I thought that was bad, I'd be flying high on a silver cloud right now. But alas, this isn't the case and I have to play slower and play things with less movement to them. Such are the breaks I guess.

In the mean time, since I last posted here, I've been going for V-B12 shots again. I was quite low even though I was taking the supplements. My LPN thinks I may need shots the rest of my life. My PCP and I were discussing this. He thinks it's due to my MMA levels being too high. My folate is good though, which is a good thing.

I also went for my cognitive study and the results are pretty good. I'm not losing my brains yet. They're just oozing out slowly. Basically the doctor told me that my cognitive functions are still intact, but my speed is slowing down. I took much longer to complete the tests than normal, but I completed most of them. This of course makes me look like a twit when I'm in a meeting or a group discussion because I can't respond back quickly like I used to. By the time I can spit out my thoughts on a subject, everyone else has moved on to a new one. This is where I feel left out in live conversation, but excel online in an asynchronous environment.

Overall I'm doing pretty good on most days, with the usual good days and bad days thrown in. On the good days I feel normal and can conquer the world, but on the bad days I feel like I can't get out of my own way with the painful bicep muscles, spasms, overall stiffness, and fatigue. The minimal tremor i have is in my chin and right lip, and on the side which is most affected. I have the masked feeling on the right side and across my forehead, and feel it mostly when I'm off.

Anyhow, how are you people doing? I hope well now that spring is finally here after quite a long arduous winter.

John

Hello John,

I have been focusing on exercise for awhile and it does help. I get frustrated and have to be careful not to use my husband's example as an excuse not to exercise. He is 6 ft. tall and weighs 318 pounds. I get so discouraged when he makes no effort to improve his health and work my tush off to try to slow the progression. Oh well, I answer to God regarding my behaivior. Wouldn't want to let him down!

I taught, as well as played professionly, woodwind instruments for 8 years. I still play oboe in a community band, but am fighting the authorities about wearing frozen gel packs in a hat and vest made by the MS Society. They are very particular about uniforms. Most of the concerts are outdoors in the summer and I can't function in the heat. Pretty sure I have won that battle as I went to the top and he promised to back me up.

If you love music as much as I do, I would highly recommend tw books by the same author, Daniel J. Levitin. "This is Your Brain on Music" and " The World In Six Songs." These books will increase your desire to keep playing when you learn the benefit it gives you. When I was evaluated by the occupational therapist, he said I was in the 98% of normal women for finger dexterity.

Keep Practicing,

Hello John

I am looking in the Forum today , have been out for some months. Good feeling to see my old friends , you are still in my neighborhood. It is only a click away - !
The winter in Norway has been long, lots of snow, glad I have a sporty car and am able to drive.
Like you I have good and bad days. I have often been to concerts and in the theater this winter, great experience every time, but the next day I Pay the price. To travel like you did must be nice, but i can imagine the airports and the waiting , the walking to gate, stress and to be concentrate for hours, is not a good feeling.

Hi Everyone, I have been doing good in some respects, but not so good in others..I have a new girlfriend that Ive been seeing for a little over a month, and that is going great!..Her name is Judy, and she is a real sweetheart!..I had it in my mind that most people wouldnt be interested in someone who had pd..I found out that I was wrong about that..She is supportive, understanding and compassionate..its just basically who she is, and its not like its something that she has to work at, or tolerate..It doesnt matter to her that there are times when pd says I cant do this or I cant that, because I dont feel good, or my legs arent working very well, she is just happy to be with me, no matter what we are doing..She is a real blessing, and the perspective Ive had on my life went from me being alone with pd, and my SSDI check, to having renewed hope of a whole, fulfilling life with a partner..We went to the Unity Walk in Central Park a couple of weeks ago, on a bus that our local APDA Chapter chartered, and she got to experience a bit of my world..It was an experience for me as well, to see so many thousands of people there who dont have pd, out there supporting our cause..It was very moving, and quite the spiritual experience..Then there were some PWP there who were alone, and could hardly walk, but they were there anyway..Let it be said that PWP are not wimps

I havent done much shellfishing lately..Either the weather hasnt been right, or Ive had other things that had to be done..Two of my cats have been sick, one with asthma, and the other with an upper respatory infection, but they are doing better

Ive had a week of nothing going right..It started one morning in the beginning of the week with a lightbulb popping out of the kitchen light fixture/ceiling fan, but the aluminum screw part was still in the light fixture, so I got a pair of needle nose plyers, and tried to unscrew it, and the whole thing, the base was turning with it..Anyway, I didnt get the damn thing out, and instead I succeeded in twisting the base out of the fixture and shorting that damn thing out..So today we are going shopping for a new light fixture Oh well!

Then on Thursday the power went out, so I went down the cellar to check the breaker box, and discovered that the expansion tank on the boiler was leaking at a pretty good clip, so I had to call the boiler guy up, and he came right down and straightened that out

And if that wasnt enough I spent the whole week trying to get my truck inspected..It needed a windshield, and the check engine light wouldnt go out, because of the EGR valve, which is an anti pollution device..So they put in a new sensor and an EGR solenoid, popped the little code computer in the plug, and tryed to program the thing..The check engine light went back on before I was out of the parking lot, and they plugged the thingy in again, and it went back on as soon as I went out that night..Finally yesterday they hooked it up to the big computer and re-programed it, and I got my sticker..Good thing I stayed out of my boat last week

On the pd front, my pd has become very unpredictable, and Ive developed a nagging tremor in my right leg..I started Amantadine 100 mg once daily a month ago, and twice daily a few days ago..It had been working ok the first couple of days, but last night it drive me crazy..My girlfriend massaged my leg, and when she put her fingers around my leg just above the ankle, and squeezed, and the tremor stopped!..I thought that was kinda strange, but it ceased and didnt come back much to my surprise..pd sure is strange!..I have intervals during the day when I have no trouble walking, and others when my legs are very weak, and medication doesnt seem to have anything to do with it..Sometimes my body releases from the rigidity 3 hours after meds..Strange stuff

Hi Steve,

Good to see you back posting. How wonderful that you are not alone. Judy sounds wonderful. If anyone is looking for a "keeper" in Ohio, my ex-brother in law left his wife (who has cared for his 90 year old mother for him for man years.) He was in the air force and retired (he is 58.) He went back to school to be a band teacher (good luck to him in finding a job) and left his wife for a 24 year old student. He is living with her now. I don't which of the two are bigger idiots, him or the girl!

Barbara is one of the most giving people I have ever met and has a delightful optimistic outlook on life. She has alot to give. Your Judy sounds alot like her.

Does anyone believe in what is right and what is wrong anymore? Or am I just an old, intolerant goat?

Hi everyone i havn't posted on here very much but like to come and visit and read how everyone copes with p.d.When i did post it was about mucuna pruriens and what to do,my doctor was not interested in it .Well i would like to tell you that i took the mucuna for nearly 12 months without any other p.d meds and it worked wonderful,until the new batch that i got was completely different than the original that i had been taking.It was last September that i ran out and re ordered ,it has taken me this long to find something that equalled what i was taking and i would like to tell you that i am once again on the way of the mucuna.At the moment the most i take of my regular p.d meds is half a madapor per day.I am so happy with the mucuna i dont get hardley any dyskenesia and i feel much better on it than the reg meds.to me it feels more natural than what i have been taking .I have had pd 6 years that i know about but thinking back probably another 6 or 8 years previous to that .i am 54 years old. I live in Australia Tasmania .

Sue

Hi everyone. I'm glad to see my old friends are still here.

@ Vicky,

I'll check out those books. They sound pretty interesting. I too have excellent finger dexterity. The years of harpischord and piano playing have paid off. I can still trill very quickly and lightly on my good day, which makes me very happy. My Mozart is still light an my runs are still like strings of pearls.

I'm glad you're fighting cityhall on the cool packs. The heat is miserable for me too. I noticed that I sweat more than I did before almost like it's exaggerated because the liquid pours off of me like water.

Your ex-brother-in-law sounds like a pip in a half! Why do people do this?


@Vertigo,

The winter was miserable here too up in New England. We got so much snow I couldn't get out of my driveway because I live at the bottom of a very steap hill. I think we got close to 60 cm on just about every storm. When we got only a few centimeters, we then got rain on top if it so it froze solid the next day. The old fairy tale of the "Princess of a Glass Hill" is true. There was no way I could drive up the steap slope. My car would actually slide back down to the bottom of my driveway.

I'm glad you are outside now in the wonderful spring. This is my favorite time of year because usually the weather is decent most of the time. I'm pretty active in the spring as well, and even started some bike riding again. I went for my first ride two weeks ago. I think I went too far for the first ride because I was totally exhausted the next two day! I should learn to take it easy on the first ride, but the day was perfect with no wind and little traffic.

I too have been to some concerts. They are about an hour from me in a church located in Central Mass. The concerts are on antique pianos from the Frederick Collection. www.frederickcollection.org Someday if you every come to the USA, I will bring you there. You would really love the collection. The youngest piano is over 100 years old, and the oldest is 235 years old. All of these pianos are playable. This coming Sunday (May 24) is a concert of Mendelssohn, Beethoven, and Schubert on an 1830 Bösendorfer.

Hi Steve,

I'm glad you have found someone to be part of your heart. You are very lucky because most people show sympathy, but they don't want to get involved.

The tremors are weird. I don't get them very often, but when I do they're as I said on the right side of my lip and jaw. I've had them in my right foot and my leg as well. When they start, I too can't seem to stop them. It's like the body is on a vibrating table and doesn't want to stop.

I've had days and weeks like yours where no matter what I touch "blows up" in my face. It's like all electronc things get an attitude and die on my when I go near them, or get me aggrevated by not working then work when I just about give up on them. My car too is acting up. I've had the oil changed, but my oil light keeps coming on. I've checked the seal on the oil plug and the engine cap. I have over 150K miles, so maybe this is the end of the car's life, which comes at a bad time for me financially. Isn't this always the case.

@Hi Sue,

I'm glad to hear from you too. I've never tried the mucuna. I've been afraid to vear too far away from the "magic" combination of what works for me. Overall my medication schedule is very successful, and when I am on I do pretty good overall. I've been at this journey for about 4 or 5 years now officially. I had symptoms for quite a few years before, but neve put two and two together.

John

John;

try changing your oil pressure sending unit. These often go bad in older cars.
if you maintained it, changing the oil and filter every 3000 miles, and you have taken preventive care of it, 150,000 miles is nothing.
VIcky;
Why do men have their heads so far up their butts?? Same reason as many women do, fear of growing old. With parkies their's is impaired judgement/compulsive behavior due to our meds, Mirapex principally.

Annelise;
Glad to hear you are doing ok. Drop me an email!!!

Charlie

I used to get comments from judges on my trilling speed and precisenessl Now that is NOT true!!
I used to go to the Bach festival at Rollins COllege. One year the soloist was a harpsicordist who's harpsicord was hundreds of years old. the music took me to another place!!! Thesound was so sweet!!

Also true was hearing ANdre Watt playing La COmpanella (the bells by Franz Liszt)
IT was a mind-blowing experience

Charlie,

Thank you for the insight into this. I have an appointment with the local Toyota dealer tomorrow to have my car looked at. I figured that 150K miles isn't that bad for my old Celica. What's bad about it is that it's too low for me, but that's beside the point. I can deal with that until the economy gets better.

I've heard radio broadcasts and recordings from the Rollins College Bach Festivals. You were lucky to have seen them live them.

The antique instruments have quite a different sound than the modern ones. The old pianos at the Frederick Collection, for example have distinct timbre differences between the the different sections of the keyboard (registers). This makes the music of Brahms and Schumann totally different on the earlier period instruments than on a modern piano. There are some recordings available of these instruments. Do a search on Google for them. In particular, the performance by Daniel Horn playing Schubert and Mendelssohn is really delicious. He plays the 1828/29 Conrad Graf for these.


I know what you mean abou the trills and precision. I find that I can repeat a measure a gazillion times as I try to play on my worsed days, and each time I play it there's a different mistake somewhere else. This makes practice very difficult and learning new stuff gets to be next to impossible.

My trills and runs are excellent still on my good days, however, but when I'm having a bad time, well I may as well as forget about playing because I get so upset with myself that I want to sell all my instruments! Then a day or too later, and everything is working again, and I wonder why I felt that way.

This year is the Boston Early Music Festival so there have been many pre-season concerts all over the place. At the end of the festival, is the instrument show where the different dealers come to show off their new and antique instruments. I try to attend these because I get to sample different harpsichords, clavichords, and fortepianos. Let's hope these will be good days so I can play without making a fool of myself.

John

I found out that Parkinson's not only affects my finger dexterity, but memory problems from Parkinson's also affects my ability to play guitar. I long suspected this, but had no proof until recently.

In December, my neuro prescribed the Exelon patch for me after I described problems I had with getting lost. If traffic was backed up on the expressway and I tried to take an alternative route home, I always made wrong choices on which way to turn.

The Exelon did not work right away, but after about 2 months, I suddenly started noticing that the medication was making a difference. When practicing guitar, there were passages I had practiced for years and it had seemed like I had a mental block for remembering a particular finger pattern. The e minor scale as fingered by Segovia seemed impossible to learn. When I was taking more lessons about 6 years ago, the teacher was insistent that I spend more time practicing scales and that I learn the minor scales, which I was not good at. That is when I began my concentrated effort to learn the e minor scale, but it seemed like I had a mental block. I spent hours playing that scale and every time I went back to it, I had to start from scratch. When I played it with my advanced students, I always had to look at the sheet music. Suddenly, the mental block was gone and I could play what had been impossible to remember! I was amazed. Likewise, there are passages of music that have always given me trouble and again, it seems like the mental block has gone and they are easier to play.

If you feel like your Parkinson's is causing any mental blocks when playing music, I highly recommend Exelon.

Recently, I went to the art museum, whose floor plan had always confused me, and when I was ready to go home, I found my way to the exit in record time!