random comments

[PatrickW]

 I've had PD for 30 years and didn't get tremors until about 5 years ago. I work out every day for about an hour, I play music every day for at least an hour, usually more and spring, summer & fall I spend a few hours every day in the yard. All 3 help me tremendously. The key is to keep moving for me. I think there is a huge link between music and working out - at least for me it is. There are so many different symptoms between every one I can see why it's really, really hard to diagnose! 

[AmmieM]

Your thoughts are very encouraging particularly the relationship between music and working out.

[Bailey_Texas]

Exercise is a must for me. Just setting in the sun does me good. Have my head phones on  Phil Collins (in the air tonight) 

[Bailey_Texas in reply to Bailey_Texas]

I just needed to share with someone

The other day while waiting in line at the convenience store there were two young girls in front of me blonde hair blue eyes beautiful children.

 in front of them their mother was purchasing some cigarettes and a Coca Cola the children smiling all the time with her dirty little faces ask for a piece of candy and their mother said I don't have enough money to buy I guess she didn't realize that she could have done without the cigarettes .all along the two babes smiling and turn around and talk to me and told me I must wait in line.

It broke my heart to see the children so happy and so dirty the little dress is torn and worn and they're obviously drunk or high mother can not buy piece of candy because she had to have her cigarettes. I just wanted to pick them up and run out the door with them and protect them from a future they where facing. . I was taken back to when I was about that age hungry no money second-hand clothes and probably a dirty face.

I also thought about the time one of my older married cousin wanted my mom to let her adopt me. I must have looked like to her how those two little girls looked to me. I had no father just a broken mother who tried her best.

Brothers that helped all they could. I made it some how.

I guess that's why I'm so self-reliant.

I have worked hard all my life always on time last one to leave first one to get there.

I have sacrificed along with my wife for my children and my family. I mostly made the decision to keep all our grandchildren until they started school. It took 20 years to do it.

This put a great burden on my wife and our life but well worth it.

Today i dread placing another burden on my wife namely me. Parkinson’s not only robs one of one’s life but lives of their love ones.

 This is why i exercise every day feel bad or not. One day this week my friends at Crossfit had to pull my hands off the barbell i could not move them. But i finished the work out.

The people at Crossfit FCH are like part of my family. It is run by the most caring and family orientated Lady that I know. she treats everyone up there like their family and not a business that is why she is well-liked and even well-loved.

My family will not see this i just need to write it down and put some where.

 

I hope that every one on this forum has as much support and love that i have.

They are why i fight so hard

[Hidden in reply to Bailey_Texas]

How many of us had a stressful childhood that wounds us but also makes us so fatigued by the time we are young adults? What happened to our dopamine production at a young age? Please share if you wish to. Also how many had head injuries before PD?

[Beckey in reply to Bailey_Texas]

Aw, Bailey. You carry a heavy load! I can see you do a lot of hurting for other people, and that's a whole load all by itself.

You know, the thing about the anecdote you shared that is so agonizing is that we all know "Do as I say, not as I do" never works. The kids can see that their mother considers cigarettes a necessity and like as not they will too, even if she discourages them.

I'm going folk dancing tomorrow night (a twice-weekly gathering) and enrolling in a couple classes through the parks and rec department. Patrick said a mouthful about the link between music and movement. My old ballet dance barre workout doesn't do it for me anymore but I am going to find other activities that involve both, and involve other people as well. Otherwise you super-athletes are going to leave me in the dust.

[FMundo in reply to Bailey_Texas]

Truly a lovely statement made by a person of character and caring.  Some people who have a tough row to hoe really understand what counts in the end

[PatrickW]

I'm doing great but worry I'll be too much for my wife to handle down the road so I do as much as can to keep it stalled, so far my recipe for success is working. Although I seem to be keeping it at bay physically, mentally I feel my brain just losing ground day by day - to me that's the hardest part.

[pushkin in reply to PatrickW]

Fit in as absolute essentials to your daily BRAIN nutrition  WALNUTS 7 whole ones or 14 halves.  Eat them any way you like but best to grind as then less work for the digestive system. Why walnuts?  It is no conincidence that walnuts are shaped like a brain let me assure you.  For more information  go to World's Healthiest Foods and also Greenmed Info  I have noticed a great big improvement in my mental clarity whilst my husband snorts and jeers at my path to keep myslf healthy and drug and doctor free.

[Hidden]

My belief is that if I can do any task that utilizes both left and right sides of the brain it helps.  I had mentioned before that I use a cross trainer at the gym as it has you using right hand and left leg and then reverse. Creativity is another way.  Music, dance, singing, art and drama help us.  Now if I can only manage to correct things I type on my iPad I will be in good shape. It is worse at night as my fingers are so tight. I can't get in between the words. Any ideas anyone?. I am an eternal night hawk. Keep it up Patrick, you can inspire us.

[lempa_nik]

PatrickW, Do you really mean 30 years? Then your PD symptoms started in your early 20's?  Yet, in your posted bio, you say you were diagnosed with PD only 2-3 years ago. 

[PatrickW in reply to lempa_nik]

I was diagnosed about 5 years ago because that's when the tremors started. I don't know about you but sometimes I have to be corrected on time lines so it may be 2-3 years or 5 or longer. Don't have any idea when my bio was done. Yes, my Dr thinks I've had it since my late 20's (30 years) according to what symptoms I had/have and after all I've read, I agree. There are so many symptoms it's almost impossible for a regular family dr. to connect the dots, when I went to a neorolagist he figured it out in 5 minutes. 

[PatrickW in reply to lempa_nik]

just looked at my bio, that statement was over 4 years ago, so I guess i was diagnosed sometime in the last 7 -10 years, does that make you feel better? when I was diagnosed really isn't the point here. 

[lempa_nik in reply to PatrickW]

OK, thanks for the clarification.  You're in good company: John Pepper also had symptoms of this disease several decades before he was officially diagnosed. 

[Hikoi in reply to lempa_nik]

Yes we all have it a number of years pre diagnosis.  JP has his own opinion about himself.  Me, I'd say 8 yrs noticeable symptoms, the researcher I heard at the last world Congress said 20 years before we are diagnosed.   I do find time of diagnosis the most useful. I do think it makes a difference at least to me, because those who have knowingly lived with PD long term give me great encouragement as the posts on here have done. 

[PatrickW]

I play in a number of bands now and one of them was just me, a friend and another friend who also has PD. Unfortunately he's gotten to the point where he can no longer play  but if he was still able to play we were going to name our band 'shake & bake' with me wearing a shirt that said 'shake' one guy wearing a shirt that said '&' and the other friend with PD  shirt would say 'bake'.  Gotta laugh about it, bitching does nothing. We were all at a party one night night and told everyone that I got a new job - they all looked up very serious and then I told them Home Depot hired me, on an on call basis to work for them during storms when the power went out - my job was to shake the paint cans when they were making custom colors! Most laughed but a few were horrified I was making fun of it. 

[Hidden in reply to PatrickW]

There is always room for humour but the most fun is when we PD people make fun of ourselves. I love the inside jokes. One of our guys said he had got us all jobs at the ice cream factory making shakes.  I have a friend in Toronto and their singing group is called " The Tremble Kleffs" If you find people without PD don't laugh then save it for your PD gang. We laugh at exercise class all the time. I announced that my skipper was broken as I can no longer skip. Another person in the class said his was broken too and his usual somber face lit up. That makes my day.

[laglag in reply to Hidden]

My boxing group did a 5k walk/run together & they gave us shirts to wear and the back of the shirts said "Shake, Rattle & Run".

[TL500]

Hi Patrickw, how old were you diagnosed? 

Are you on meds?

and you have many or not symptoms? Do they vary or subside some days?

Are they less when you exercise or listen to music/gardening?

Thanks

[PatrickW in reply to TL500]

I was diagnosed correctly, after being misdiagnosed with benign tremors, around 2009, I was 50. I've probably had it since my late 20's looking back and connecting the dots, my Dr. agrees. When the tremors began I went to a neurologist who figured it out after asking me about 5 questions. He's Dr. Abidi in Maple Shade, NJ, and in my opinion a great DR. I felt like a hypochondriac for years because I was constantly seeing specialists who couldn't figure out why nothing worked for me; it was because they were treating me for things that couldn't be fixed. It was Parkinson's and there was no fix. Stomach problems were the worst and suffered through the pain since my late 20's. I started losing my balance and getting hurt (broke a leg!), Trouble swallowing, can't sleep more than a few hours sometimes less (slept 2 hours last night), lost most sense of smell and therefore taste too.Frankly, I was probably the only patient that ever said great when given the diagnosis of PD. I assumed since they finally figured out it could now be fixed - WRONG! My Dr. said that there was nothing he could do about any of those problems except to help with the tremors. I was disappointed to say the least but just knowing why I wasn't getting better helped me mentally. 

Like everybody I have my good days and bad days, but I have more good days than bad ones and I think it's because I'm proactive - I exercise and walk about an hour or more a day. When I'm having a bad day, I stay home, I don't like strangers staring at me and don't like the look in the eyes of my friends when I have a bad day. When I'm active (i.e.: working in my yard, playing music, etc.) I don't have it. It's when I sit to rest I get it back, inaction makes it worse - keep moving! When I get stressed or over tired I get the shakes a little bit. I will say that when I'm having a bad day playing music and working out help a lot.

I'm on AZILECT

, ARTANE,

REQUIP ,

SINEMET CR TABS

Hopefully this info is helpful to you.