A Visit From Mr Parkie

[Boots1]

Just when I thought I was doing pretty good physically Mr Parkie came back to remind me he is control!!! I woke up around 1:30 a.m. and got up to get a drink before trying to go back to sleep. I, like many of you do not sleep most nights. I started to head back to my room when this weird feeling hit me and I knew I was going to fall and there was nothing I could do to stop it. Once I hit the floor my dog was there to comfort me. I live alone and this new episode scares me and I can see where you can be seriously hurt.

[Jim_Adams]

Shoot! That's the thing about this affliction. There's about 900 things that can mess up, and it's like each one is a plate spinning on top of a stick. Best you can do when one does fall is to figure out why and how you can keep it spinning next time. Carry a cane with you even if it's only going 20 feet to the kitchen? Sit down as soon as you feel funny and regroup? Change your mix of meds a little? Wear a crash helmet? (just kidding, trying to make you smile a little).

You just gotta do what you can. We all got our 900 plates. I know, I got my set. I wish you the best in your journey. Just remember, it will get worse! (trying to make you smile again)

Jim

[Boots1 in reply to Jim_Adams]

Thanks Jim for the smiles and advice.

[chrismw]

I hate that feeling! It's as if the monster has complete control and you can do nothing to stop the fall. It is so unlike other falls, isn't? You get a moment of recognition that you are not in control, this pd monster is. A pause of surprise and dread and a quick pray that you won't be hurt too badly. And then you go.

Hope you are okay.

Chris

[Boots1 in reply to chrismw]

Thank you Chris I will be ok. As far as this monster goes I will fight him for control for as long as I can.

[redbudlady]

I still wake up sometimes from very viivid dreams. I found something that works very well for me. Before going to sleep I drink a cup of sleepy time tea or take valerian root capsules. I then read a little poetry. I try to relax and clear my mind. I breath using my nose taking several deep breaths in and slowly release through my mouth. All of these steps have improved both the quality and quantity of sleep.

[Boots1 in reply to redbudlady]

I will give your sleepy time tea a try. My sleep pattern usually goes.....four hours sleep a night for three to four days and then back to an all night sleep for a few days.

[Dennis]

I experience some of what you are...very real dreams, poor quality of sleep,

dizzy leading to a few falls, legs hurt and I can soon tell they are not going to hold me up much longer so I sit as soon as I am able. I have little to no desire to eat. If/when I do eat I get sick to my stomach. I wake up in am sick to my stomach and when I go to bed at night I ache all over and have pain....and more as you no doubt have experienced manytimes like trying to do bookkeeping and other home/office responsibilities.

[Boots1 in reply to Dennis]

It's strange how many of us Parkinson's people share alot ot the same symptons and yet we are all so different.

[Hidden in reply to Dennis]

I was told over 4 yrs ago that I had Dyspepsia (indigestion). One symptom is a sensation of abdominal fullness. This was treated and I forgot all about it.

It returned several years ago and I am just remembering that it is probably dyspepsia.

Am going to the drs. Monday, I should find out then.

I am surprised that have such a difficult time eating that I am not losing weight.

[Koko in reply to Hidden]

DiCan, DOn't wish for weight loss! I lost 30 pounds in three months and look awful! Skin and bones are not pretty. ALl my life I have dieted and now I look like I just left the concentration camps. I figured out how to get food down, I had avacado, drank BOOST, and frozen yogart etc. Now am back to my regular weight as for some reason I have gotten my appetite back and don't feel like my lunch is stuck in my throat. GOod luck!

[cowmom27]

Can relate to poor sleep, pain and legs hurt so bad some nights I want to cry, have to get up slow because of lightheadedness, my fiancee says I have nightmares but I have no recollection and fortunately no falls in a very long time and it seems mr parkie's visits are coming more frequently trying to wear me down but will continue to fighr

[RoDias in reply to cowmom27]

Nightmares are common. Sometimes my husband remembers his, sometimes he doesn't. I always hear him talking/screaming in his sleep.

[Jbcourcy in reply to cowmom27]

Nightmares are crazy. I sometimes find myself punching the air or taking a swing at something I see in my dream only to find in the morning that I've knocked my lamp over or better yet, really punched my boyfriend while sleeping....

[cabbagecottage]

Have you tried sleeping with a small light on . .I found it helped my husband . . I use quite a few lamps around the house on darker days . that also helps if he is moving around . lifts the spirits as well not the spooky ones lol

[PatV]

We work on falling in all the PD classes we take at the JCC: yesterday in Alexander Technique a woman shared how she felt herself falling as she often does and was able to step in such a way that she caught herself. A little training helps. They also offer Tai Chi, NIA, yoga, and all work on falling, getting in and out of chair, etc. And it's fun fun fun!

[jillannf6 in reply to PatV]

hi [pqat

ru in teh USA

I would love to b able2 fall better

but not a chance

jus =t reduce the falls in number is hte aim ofthe physio

idp TAI CHI but not mcuh bette rwith teh balamce a the moment

;lol JIll

[merlethegirl]

I'm exhausted. Not very much sleep last night. I slept 12 hours a couple of nights ago and my Mom woke me up. I growled at her to me sleep in as long as I could because I needed it. I've explained to her about the sleep issues related to PD but she doesn't listen.

My legs are hurting and they are really affecting my mobility. I haven't fallen for a few months. I'm really careful knowling that I could fall at any second. What a drag.

[RoDias in reply to merlethegirl]

The National Parkinson's Foundation offers free booklets regarding issues related to Parkinson's. Perhaps if your mother read up on the issues related to PD she would understand that you need to sleep no matter what time of the day or night. My husband didn't get to bed until 4:00 AM this morning. However, he was up at noon. Who knows when he will go back to sleep. it may be later today, or early this evening. I know to let him have his sleep time.

[Dennis in reply to RoDias]

Bless your heart!

[RoDias]

WOW! that is a serious thing. I'm glad your dog was there to comfort you, BUT you need to get the help alert bracelet. My husband has had some falls when no one was around but he won't let me get the bracelet (it actually looks like a watch) for him. Of course, the falls were before we both retired. Now that we are together almost 24/7, we both feel more comfortable. By the way, we have two dogs, one is very much a Daddy's boy and follows my husband around like a shadow. If my husband has trouble sleeping and goes into another room to sleep, Duke goes with him. If anything out of the ordinary happens, Duke comes flying into the bedroom, jumps on the bed and paws me to get my attention. I then go check on Bill. It's usually because he's talking or whimpering in his sleep, but Duke is still alert to that.

[emswife]

Boots; I just want to comment about your dog! Mine is almost identical so maybe I'll get down n cosy with her when Mr Parky come by,which is often in the middle of the night. Seriously tho, maybe I should experiment with taking another 2mg requip xl in the night? I take 20 mg once a day, 2mg at 6pm. Would it help?

[Hidden in reply to emswife]

I talk one Carb/Levo 100mg about 4am each morning. It helps.

[janpak]

Taking those falls are rough. My husband of 83 has been found to have PD just a year ago. He has his walker and commode beside his bed ( hospital bed)

when he is having a lot of difficulty I ask if it is allright if I walk behind him )

My Yorkie-poo Shaun follows him and often takes his nap at the feet of "Dad"

He will take a run to the kitchen if he hears the fridge door open.

My husband has trouble with his legs just not wanting to move. I know it is frustrating for him. I hope you feel better.

[Susie01]

Just yesterday, I felt really good. I was able to speak without a problem and had a minimal tremor. I actually had the thought, "maybe I don't really have PD"! Today, I woke up exhausted, tremors in most of my body...Guess the doctor knew what he was talking about, REALITY TEST!

I have not had a fall in several months, some close to it but was able to grab onto something. The ones that come out of the blue a baffeling, for me, I feel like I am being shot out of a cannon...

[cindylouwho]

I am SOOOO glad I just found this site! You all make me feel better in that there are others out there going through the same things that I am dealing with, even though we are all different. I have had MANY falls like you describe here. More than I can count. I have broken many bones, had many stitches, and been to the ER so many times that the EMTs all know me by name. I have been in a nursing/rehab home for about a year now due to my falling and not being able to live alone. No one here has PD, and the nurses/aides really dont understand the disease. The only one who does is my neurologist. I am in a wheelchair, but walk with help and a walker for short distances. I am only 48, and looking back, have had PD for at least 4 yrs. When I read your post, I was saying "THAT'S ME!!" I was just telling my roomie that I wasnt having bad tremors and was happy that the meds were working when BLAM - I wake up to Parky reminding me that I have this desease. We must all keep up our spirits and support one another here and in the real world. No one else but God really understands. Thanks for posting, pet your pooch for me, and think about investing in bubble wrap to make your clothes out of. =o)

[Boots1 in reply to cindylouwho]

This is a wonderful site. I'm glad you found it. Everyone is so helpful and you don't feel so all alone. I found this site a few months ago and it's been a god send. The pooch has been petted but I'm not too sure about that bubble wrap..lol...

[BILLYRAY]

II fall all the time...my best thing is knee pads...iit really helps the falll....hang n there it doesnt get any better..

[jillannf6 in reply to BILLYRAY]

hi billyrayr

yeah the knee pads r essential fo rwhen i fall too- they r really 4 break dancign but i shall nto be doing that !!

but i hav e PSP so no tremors either

lot of falls

communitcaiton problems

co ord problems

eyesnot binking and closingo and downward gaze affected

LOL JILL

[Jbcourcy]

Haven't fallen yet but legs hurt so bad sometimes and I'm so unsteady on my feet that I fear I'm going to fall. I'm 38, for the past four days, I move like I'm 83. I don't know how to make the meds work during certain weeks in my hormonal cycle. Every othe cycle I'm homebound pretty much for a week. Looking forward to DBS on April 6th. Keep smiling everyone, even though I know how difficult it is at those times when the disease seems to take control of our bodies.

[Koko in reply to Jbcourcy]

MOving like an 83 year old isn't much fun is it? ANd so many of us were athletes before PD hit us. OH well......yes keep smiling! THEn they will think we are minus a few brain cells too :)!

[Dennis]

Me too! I most recently had 2 days and a night that I was telling myself I did not have PD because there was no pain, tremors, etc.! I was smiling. Then when i woke up from that last night I hurt all over and PD was back with a vengence.

I find the more stress I am in the worse PD is!!!!!!!!!!!!!!! I spend hours counseling today and could hardly get home. I went to bed and got up to get on this site for night time encouragement before going to bed to wake up tomorrow to a full day with a doctor's appointment...I hope we all have a very good day. ~~Dennis

[Hidden]

Yes! I had a couple of days last week where I felt really brilliant, I walked miles, no pains, no tremors - I even bought myself a pair of classy heels for my sons engagement party! I did actually think maybe i dont have this demon. Then this was followed by several nights of poor sleep, rigid ness, pain, foot dragging etc etc - the heels have been returned lol! One to you parkie but you wont win. xx

[dubdiva]

That sounds scary and I so relate. Just like Dennis said in I was thinking _ dont have Parkinsons -andd sure enough yesterday I woke up could barely walk, bone pain wouldnt leave even with oxycontin, to depressed to even and try and work, and stress -I can barely function,,but then theyll be giid days which it all the more confusing... My dog is a rescue dog. He rescues me contantantly. I hope your feeling better,x

[honeycombe3]

Dxd 8 yrs I nearly killed myself falling in the 1st 2 yrs, then less & less with physio & now (touch wood) hardly at all. The falls you describe were the 1st batch, the 2nd lot were mainly slips or trips & these days it's mainly due to pain,stiffness, fatigue,stress etc. Having been where you are you may be on the up!! I hope so.

[fishinggirl]

My golden retriever is no rescue dog but she is such a good friend, good listener, playmate, bed warmer, and pal. Love her to pieces! I can vent to her and she listens and gives me a kiss when I need it. I get my exercise throwing balls, frisbees, sticks, and just playing with her. My hubby is there also, but not as much fun to play with, except for taking me fishing. (the dog goes also). Have as good of a night as you can everyone, tomorrow may be a great day. I used to think on good days that I may not have PD, but that phase passes, just like puberty did (haha).