One of the worst days ever.....

[WayneP]

Yesterday was one of my worst days yet. My background is 47, been diagnosed for 3 years now with Parkinsism with Gait Freezing. MDS thinks I might have PSP but I don't own that one. This is fun enough.

Anyways, I am usually able to control the monster in me from showing his ugly side. When I sit and am relaxed, the monster is held in check by the fistful of pills I take daily and I can read or watch tv or what have you like I was normal. When I have to get around, I use my walker that has a laser on it to help me from freezing while walking and the doorway thing, those who freeze get me. Now I will shake and bob a little more as I get around but I really try to concentrate on NOT doing so as to look ok to the wife and friends. I takes a lot for me to do so at times I tell you but I just hate how they look at me. " Are you OK?". What a question?? I am like, do I laugh or do I scream? Do I have to walk around with leaflets about information on Parkinson's? I mean my wife sees me every day, why are you asking me why I are arms and head moving funny? My mom comes to see me every weekend or so and acts like I am going to die or something. I tell her it is what it is and I am going to outlive her so just relax. And so I try so HARD to make the monster behave.

But yesterday, WOOOOOOOO. I could not stay in my skin. Thought I was in a Steven King novel. Just could not get ahold of the beast. I have a recumbent trike I ride so I can't fall off and went riding to exercise and help feel normal. Funny how I can't walk without freezing but can peddle that trike. Anyway, didn't work. Got home. Body got stiff, then shaking. Then dogs barking, then people coming over to visit. Then AHHHHHHH. I just felt like I was going to come out of my skin. Sat down for awhile and just relaxed but the Beast was out showing his face. Maybe to much meds, not enough, maybe I need Oprah.

Visitors are over and was trying my best to hold it together. You know, let's just do are deal here and not have me be a distraction. I just hate that so much. Everyone talking and laughing having a good ole time and someone has to say it, " Wayne, are you doing ok? Is our being here to much for you?" But all was cool. They left after awhile and I was still alive. But went to the kitchen and all hell broke loose in front of the wife and was just uncontrolable with the head and arms movements. Finally told her about how I can control myself most of time but not today. She says I need not in front of her but she still does not grasp that when these things happen I am not having a stroke or heart attack and don't need 911. It is what it is. She has read about this stuff. Not uneducated.

What to do what to do? 47! 30 more years of this stuff, more maybe less, how do we get our minds around this. I got my faith around it. How do I get the mind around it? This stuff really messes with your head, at least my head.

Where is Oprah when I need her?

Wayne

[wifeofparky]

Are you a candidate for DBS? I'd talk to your MDS about it. Good luck man.

[WayneP in reply to wifeofparky]

Have not talk about it, may be an option. Thank you.

[wifeofparky]

From what you are experiencing and your age, you should explore it. Keep us posted on your thoughts and decisions.

[WayneP in reply to wifeofparky]

I will and thanks.

[Hidden]

Hello Wayne

was very saddened to read this post as clearly you are having a really tough time. I have no advice for you regarding treatments other than to see your consultant / care team. I can only tell you what I do when I am feeling challenged by PD. It doesn't happen much, as I dont allow it to take over, that my stubbornness. I am 49 and around year 10. I play music very loud, I play the drums, I paint and I cook but if I am feeling a bit more down than normal I write, and I let the words pour onto the page, every thought, every feeling. Sometimes I share it often I don't. Just my thoughts! Wishing you a better day if you like classical music try Faures requiem Agnus Dei

Kindest C

[WayneP in reply to Hidden]

Thanks for the kind words and I am still fighting that beast till the end. Just wish all could not see it playing with me.

[jillannf6 in reply to Hidden]

Hincolleen

Faures requiem is marvellous

And v uplifting

Lol Jill

[Yogibear]

Wayne, snap that is me. I am 39. I have this all the time! I cannot sit still. I need to move. Its hard to manage this at work but use sheer determination. I do not know if its undermedication/over. My feet have taken on a life of their own (smiles) they move to their own beat. Now re the "trike" WOW! I loved cycling but cannot stay on a two wheeler. I have looked at trike's how are they to cycle are they cumbersome or can you make progress. Its exercise however fast or slow as well as a mode of transport at the same time. I want to hear about you and the trike please. xx

[WayneP in reply to Yogibear]

Go to Catrike website and I have the Road. I have always been a biker, Harley type that is but bicycles too. Funny cause I look I would be the type you see on either, no beard and chain on my wallet or spandex shorts and that funny aero helmet. LOL.

I saw a video and 2 years ago about a guy in Belguim that had PD that could hardly walk but could ride a bike like a champ. My first thought was this guy is going to kill himself, in an accident avoidance type situation he might not be able to react fast enough of balance could play a fatal role. So I found these guys. You can't fall off!! That was the biggest factor I felt for for any balance related disorders. The next was with my freezing could I peddle. So I just had to find out. And I was really worried there about a let down but darn if I can't peddle the that dude like nothing. It is amazing. Get off, can't walk for squat but hey I feel normal on that trike. Easy to transport on a roof rack or bike rack. And they can go pretty good too. Check it out.

[PatV in reply to WayneP]

I'm going to check this out!

[WayneP in reply to PatV]

Just the best thing.

[jillannf6]

Hi I am sorry unr having such a bad time

I t will b better

So hang on in there

Lol jill

[WayneP in reply to jillannf6]

Thank you Jill, hanging in. I was reading on the Mayo post that you went there and got your PSP diagnosis. Did you go to Jacksonville? Did you every go back? I was told the same thing myself 3 years ago and went back for a follow up a couple months ago and told he was confident on the Parkinsism with Gait Freezing diagnosis and PSP is still on the table, because of the slow types you mention. My eyes act funny, not a good sign but Sinemet is helping me, a good sign. Funny stuff this is.

[jillannf6]

np i ma in the UK and did nwto go ot the MAYO CLINIC

BUT A T AGE 64 diagnosis fo PSP ha shelped me a lot

lol JILL

[PatV]

If I'm in a meeting and become 'twitchy' I just stand up and start moving about. Stretch, etc. If I kick someone on the bus, I say 'excuse me, I have Parkinson's'. My kids are still thinking I should be in a residence! Fine if you can find me one with gardening, beaches, aging hippies singing Crosby Stills + Nash songs, ball room dancing and salsa!

[WayneP in reply to PatV]

I got ya. I understand the feeling. Your kids just don't get it, but they just want the best and I get that too. But you can't put us away either.

[grammieof3]

Have the dbs i was 47 when diagnosed thought my life was over and it was the old one anyway. I did dbs in 2006 and 2008 now I'm like the energizer bunny. With dbs and medicine i can at least think I'll be able to manage the life that i have now

[WayneP in reply to grammieof3]

See below. LOL.

[WayneP]

That playin in the brain thing really freaks me out. Have watched a few videos about it and WOW that it some stuff. Playing tap dance in my head, hmmmmm. It is really hard for me also cause I am the only person I know with this stuff. And I live in Florida. You would think with all the retirees around here I would have dumped into 1 or 2 just by accident. Nope. State must hide them somewhere to not scare the tourists away.

[Jocee in reply to WayneP]

again, LOL!!!!!!!!!!!!!

[PatV]

You've got to find a pd support group or exercise class. The best

[WayneP in reply to PatV]

Yes, I feel you are right. As being 47 seeing the progression in my face has been a fear but might be a blessing in disguise.

[grammieof3]

You have a very good humor so whats wrong with a little tap dance doesn't hurt

[WayneP in reply to grammieof3]

Have you seen the commercial were the doctor is operating on the guys brain and using his hands to type playing with his brain? Hmmm, some truth in advertising for once I think.

[grammieof3 in reply to WayneP]

Are u sure that wasn't an hullicination. Ha ha

[WayneP in reply to grammieof3]

I will find it and post for you. Funny as all get out.

[Yogibear]

grammieof3 what is DBS like? I am 39 do you reckon that might be suggested for me with wearing off and dystonia problems?

[grammieof3 in reply to Yogibear]

I am a big fan of dbs its kind of scarey when u think about putting something in your brain but when the doc got to the right spot and they handed me a cup and i didn't shake i started to cry and the doctor said whats wrong i said nothing im happy. I had more trouble shaving my head than with anything else. And who knows now maybe u wouldn't have to. I didn't see anyway around it the way the doc shaved places but i wore a scarf and the second time a wig. And see I'm telling you all about shaving my head was the worse part. If you have certain questions please ask. Medicene wasn't working for me i also had dystonia. They told me the younger i had it done and other wise good health the better. When i get where i can't walk good or my tremor is worse i see the doc and he adjust my settings it is really amazing how it works.

[Jocee]

First of all let me say that you have a gift of words. I was laughing out loud reading your blog. But on a serious note, I can relate and I know how frustrating it can be. It sounds like dsykonesia (sp) is your biggest problem, is that right? I can only speak for me, but I take the MINIMUM amount of pills that I can get away with to avoid this. I hate it worse than anything. (the dyskonesia) I was diagnosed when I was 42 and have had PD for 25 yrs. Trial and error with the meds might help you. I feel that no one knows your body better than you do. Please do not try this w/o your doctor's approval/knowledge, but maybe you can cut back just a little. I also think a sense of humor helps a lot! Good luck to you, WayneP.

[WayneP in reply to Jocee]

Well, thank you and I try my best. If it were not for humor I would not know what might have come of me by now. Former postal worker see and you know our history. Imagine one with PD, would be like a Taliban on an acid trip. Notice, no reference to Muhammad. My gosh! I am just trying to go day to day, stress can make things worse I have noticed. Much idol time not good either. Had to retire from Post Office after 23 years, could not handle the mental strain and balance was a safety concern. Cannot drive anymore, that really sucks. Losing that ability at my age is a blow. Financial issues from going from 80k a year to disability is another shock the system. I know, I know, those overpaid bastards. I didn't make the system just reaped the rewards. Be I am just blessed it is not worse. Just the days that are can be tasking. You never know, do we.

[suetdumpling]

WayneP,

Your posts are so genuine & funny. You can set up your own web. I laugh & learn more from them. That are the blessgins!

You will be like Michael J. Fox. He was like that 15 years ago. It seems he & his consultants work out something to get him back to work.

Don't give up & self-pity yourself.

I take minmum dosage to keep myself mobile. Just fly back UK from a short trip.

Meditation with deep breathing does help. Have you tried using blue glasses?

suetdumpling

[WayneP in reply to suetdumpling]

My day was like one I had not felt before, I am sure some old hippie out there who remembers their first hit of LSD can relate. I am not that old by far, just relating from my sister.LOL.

You know Mike just had a hard time working in front of the camera for long periods due to moving all over the place, can't have that in his job. I guess he is drugged up enough now to be "stiffer", heck they have had formaldehyde out for years. And he would stay so fresh looking between shots.

I have not heard of the blue glasses before. How do they work? Do you have to be a Beatle to wear them? You mean John had Parkinson's all along, wow.

[suetdumpling in reply to WayneP]

I read one of the blogs yesterday. They put a blue sheet of paper in front of a PD patient who became very calm straight away. His dyskinesia stopped by wearing a pair of blue glasses.

[DeParkiePoet]

My dear Friend in the Park.

My heart breaks for your pain

I, too wish I felt good in my Life again

My skin crawls so do I

I wish we were birds

not angry, but able to fly

away

Kiss the ones who love you kiss the ones who don't

here will come a day when you can't or won't

Back to the future! Mayan or might'nt?

Good luck with the Old acid trips!

i read a story in 1967, about a person who had Cancer and took LSD to go internal and eliminate it> can't recall the ending though

I Sincerely Hope that the good outweighs the bad by the millions

[WayneP in reply to DeParkiePoet]

Thanks so much as the good do outweigh the bad. Just when those bad come I have to remind myself of the good. They come back and I just have to be my own cheerleader I have learned. If you can't pull yourself up, it makes you that much heavier for others.

[Shakinginnc]

Wayne I know exactly how you feel 😳 Although I am older (62) my husband is very intelligent and informed on PD but seems to think that I can control my body with will power? He tells me that it is all in my head ( not the fact that I have PD) but how I deal with it! I have not worked in two years because of the effects of PD but he still expects me to be able to cook clean and iron as I did before. ( he is not a cruel person in any way ) just the opposite he is very loving I just think he feels that if I “push” myself that I may stave off the disease ! How can I make him understand how pushing myself for his benefit is stressing me out so badly?