Hand glued to your side, how your brain feels, strange behaviours, pre-diagnosis with PD

[Swimfast]

I have not read of these behaviours. Often my left hand is glued to my side hip or i put it on my right chest. I catch myself seeing my hand stuck there, It feels reassuring. Does anyone else experience this.

When I walk i feel as if I am drunk. My brain thinks that I am changing pace, falling from one foot to the other, going sideways, going fast then slow but my walk looks ok to another. I don't feel connected to the ground, feel spaced out, disconnected. The other day I was with my family sitting on a bench. We all got up, they walked straight ahead while I walked in a semi circle before joining them. I could not explain why. It just happened.

I cant follow complex thoughts, like a series of directions, I can't remember past the first 2 instructions. I can no longer do math sums in my head. I used to be very good at that.

I am waiting for my appointment with a movement disorder specialist. Waited 1 year already, 2 more months to go. Have seen a few doctors, not one has tested me thoroughly.

I started with fatigue over the last 5 years. I was a competitive swimmer, good cyclist. Exhausted after swims or rides, had to cut back severely. My walk has changed, left hand hangs by my side, get tired easily, finger taps or toe taps on my left side freeze after 7 reps, right side is normal. Changed from IBS -5 BM's every day to constipation. Last few months RBD has set in so a lack of sleep is happening.

The only thing worse, than a Diagnosis of Parkinsons is having PD but no diagnosis. At present I cant access any help.

Does anyone else have similar experiences?

[Juliegrace]

Yes to several of these. I did not have a good night and my meds have not kicked in so that is the best I can do for now.

[park_bear]

Remedies for Parkinson's constipation discussed here:

healthunlocked.com/cure-par...

A tendency for my hand on the affected side to do some of the things you describe.

[justoldage in reply to park_bear]

Constipation can be solved by eating a few prunes.

[KERRINGTON]

Yes, I've had similar experiences. B1 helps some with balance issues.

[Bolt_Upright]

I put my left hand on my left hip or my right shoulder to relieve the pain in my left shoulder.

I have not been diagnosed with PD (except by Marc). I have RBD and a sore left shoulder and some other symptoms. I think broccoli sprouts may be helping me. I will post more on those.

[Astra7]

One of the first things I noticed was my left arm hanging limply in front of me, and I had no idea why.

Also I would be be unable to remember a six digit number from one screen to the next.

Also that funny walking in a circle thing- it’s so weird.

I’ve been on meds for 7 years now.

In the past few weeks I’ve been going to spin class and I believe it’s actually helping. I’m not as desperate for my meds at the appointed hour.

Sounds like you have PD and really need to see a specialist-where are you?

[Farooqji]

for how long have you been diagnosed

[DEAT]

The arm on the chest or hanging at my side .2 of my first symptoms.

[HekateMoon]

Hi Swimfast. Welcome to the HU. Site. Yes. I relate to some of the patterns and behaviors you mention. Left arm across my chest as if holding a handbag...quite comforting. At the beginning the feeling of accelerating or going towards one side. Feeling dissociated, not following instructions as well as i used to..etc. I used some feldenkrais lessons to help with balance. Many free on youtube. Took three years to get to see a neurologist. Got dx by one online! I walk to drums and follow John Peppers method. Be very conscious of every move, so i swing my arms and place my feet onfloor heel first. When i cach myself on the arm behaviour i relax and breathe into the arm. Meditation helps . Stay in touch Great minds work best together. Good amount of great minds on this site. 🙏

[hmm777]

Hi, Swimfast. Yes, I recognize several of the symptoms you have described. My right hand tends to cling to my side, often with the wrist flexed so that the palm is up and pointing forward with the fingers in a claw-like pattern, as if I am cat scratching at something in front of me.

Your description of the drunken walk is spot on. I frequently feel disoriented when I first start walking; I tend to lose the vertical and veer around, leaning from side to side; and I tend to feel disconnected from the ground, as if I'm walking on the moon and have just stumbled, causing myself to float for a few feet.

I tend to lose the thread of conversations, complex instructions, movie plots, etc. The additional effort it requires to follow anything closely has also lowered the threshold at which tedious things (e.g., pointless conversations) make me grumpy.

Altogether not a fortuitous set of developments.

[mach262]

Hi Swimfast, I don't have a PD diagnosis either as decreed by a normal DAT scan and no response to any PD drugs. I have right side tremor and rigidity but no bradykinesia. However, my hand writing has gone smaller and the balance is almost identical to yours. I use Dulcoease to prevent constipation and I dribble a lot. Not very appealing. The Doctor suggested Pilates for the balance and circuits for strength training. So far, he hasn't come up with a balance Physiotherapist, no doubt for financial reasons. Oh, and my memory is going. It's DBS next for me assuming I qualify (y/n sweepstake anyone?)

[Swimfast]

I am 58 years old, my father was diagnosed with PD at 61. A difficult man who caused the death of my mother 2 years later. We became his main carers, as we lived on the farm with him for the next 7 years, and my siblings lived many hours away. My father in law also has PD.

I have researched many videos into Parkinsons but very few describe how it actually feels to the person. I feel it in my brain, It just stops or freezes, at times, when a complex task is required.

I have no tremor, slowness is all on my left side.

My family doctor did a test where i was to touch my nose then extend to touch his finger. Then he would move the finger so I had to correct "mid-flight" to the new position. No problem with my right side but on my left my brain froze, I stopped my finger and slowly directed it to the new position. I felt so stupid.

Thanks for the feedback. It is a great help to hear others, it makes me feel less crazy.

[LostinHeadSpace]

Swimfast,My husband is your age and has your symptoms. There are other types of Parkinsonisms which are different from normal Parkinson's, with varying degrees of severity. There is a separate HealthUnlocked forum for these, the PSP Forum (in spite of the name, it also includes other forms, like Cortico-Basal Syndrome).

I wish you all the best!

Lost

[Swimfast in reply to LostinHeadSpace]

Thanks for the link. I will check it out. I have had an MRI and it was clear. So Parkinsons plus syndromes are less likely.

[falcon946]

Yes I also have really similar symptoms along with other weird things. I too was a major athlete, swam competitively through college, played competitive soccer, ran long distance, got into major bike riding etc. Now I walk with my dog as she goes and therefore so do I. Plus she is there for balance, helping me stand back up if I fall etc. Also i can use music or a metronome app for rhythm. Sometimes i look like ive had a stroke if i push too hard with excercise, but get way too much movement in legs but my arms and hands are by my chest. Like you said, some things are just weird. Do you do odd tapping with your foot at times? My pd pt said it is my way of sending signals to my brain "of where I am in space" to try to maintain some balance. I wish you the very best

[Swimfast]

Just wanted to add an update to say that I was diagnosed with Parkinson's 3 months ago. I was relieved to finally get this, the medication is helping a lot. Thank you to all who replied.

[Esperanto in reply to Swimfast]

Thank you for your message. For you I can imagine something more positive, but at least you can get started with this clarity. This is a wonderful club that can perhaps help you with that!🍀