Vacation preparation

Bob314159

I've been on walking vacations to NYC before - generally no issues - I let go of keto and eat more carbs than usual. Typically walk 14,000 steps a day [normally I walk 6k]

Last year I had problems - first 2 days were fine, then had some kind of body distress where I could barely walk. No stomach problems.

My trainer thinks it was a combination of walking more than normal - combined with a richer food intake. He thinks I should prepare by walking more than usual some days combined with eating pizzas and other food I might eat on vacation. Does this make sense?

kpk54

No input from your neurologist regarding the body stress, excessive walking/barely being able to walk and Parkinson's. My apologies if i am confusing you with someone else regarding Parkinson's.

Bob314159

Good memory

I checked as soon as I came back- no connection with Parkinsons - and the symptoms never came back. Parkinsons does slow walking - but what was happening was my back was twisted so I could not walk straight. Sort of like this [I'm male]

Bob314159

kirkor

No, I can't see how pre-eating pizzas would help you in this case.

tcunbeliever

maybe go see a chiropractor before you go

LizinLowell

I was going to say chiropractor, massage therapist, or physical therapist, too.

mmultanen

Any travel is difficult for the body. Out of routine, different beds, different foods, different elevations and humidity levels, different time zones, different schedules. To be certain there are things you can do to prepare your body before you go. Walking more before you go, good shoes and an appropriate travel bag will help and figure out what you need to take with you or the breaks/rests you need to take while on the trip to ensure you don't tax the body so much it can't help you enjoy your trip! Having a plan to address the issues that arise while traveling is probably the best prevention.

kpk54

Rest. I hate it but with my neurological movement disorder (Dystonia) laying down on a bed or stretching out on the couch for 45 minutes to an hour midday is the best thing I can do for myself to calm the movement/muscle contractions. Dystonic movement (and/or rigidity of sustained contractions) stops during sleep and I hear the same is true for Parkinson's. Perhaps you're over tired and a midday rest would help you carry on more comfortably the next several hours. I don't need to sleep midday but when the muscles start tugging, pulling and twisting me into crazy postures, I take a break and rest. It works for me every time.

Bob314159

Interesting - dystonia was one thing I thought I had last year - but I only had twisting - not repetative. Its hard to get a midday rest - I find it only works if I can get up again before 1pm and my schedule does not always allow that. Unfortunately my work requires me to be at a computer doing real time support with limited chance to get up and move. This is exhausting. I'm experimenting with doing yoga before I start and in my mid-shift break.

kpk54

In mentioning rest, I was thinking in terms of your vacation planning. Perhaps half day tours/adventures versus a full day. It's pretty tough to lay down during work so I hope you find benefit with yoga during lunch and breaks.

This twisted state you mentioned: I've read that Dystonia can accompany Parkinson's but it is generally difficult to determine which is which. I've met several people with varying degrees of Dystonia at functions held for "us" (conferences and such) and the vast majority have my type: Cervical Dystonia aka Spasmodic Torticollis. Point: very few have what one would call a tremor or repetitive movement. It is a long sustained contraction, so yes, twisting. Actually a constant contraction. Those of us with Rotational Cervical Dystonia (the most common) describe it as feeling like someone is trying to rip/twist our head off our neck. And it is aggravated by movement. For example, I can often sit at my computer and type with my head facing forward (or at least not turning right too far) but the minute I get up to walk somewhere, my left SCM engages and twists my head to the right. The longer/further I walk, the more it seems to twist. Of course there is a rotational limit due to vertebrae. I literally have to sometimes grab my head, heavily concentrate and almost force my face forward or it becomes extremely painful...like someone is trying to twist it off my neck. It's never ending but I'm sure you know how that goes.

The pic you posted above with the word "twisted" in your post above it...well, I could imagine what you were describing. Becoming twisted. That is what my dystonia is and the same is true or those I have met or corresponded with. Not a tremor (for most of us). Twisted into peculiar postures. Generalized Dystonia is a bit different than the focal dystonias. Generalized of involves tremors, flailing, "Dystonic Storms". Age of onset for Generalized tends to be young. Focal Dystonias (isolated to certain areas or body parts) onsets are more towards age 40 and up.

There is a type of Dystonia that is not constant but rather occurs in "episodes".

http://www.dystonia.org.uk/index.php/about-dystonia/types-of-dystonia/other-types-of-dystonia/10-paroxysmal-dystonia This could be what your twisting torso was all about. I'm sure you have a keen awareness of what you body is doing as you deal with Parkinson's day in and out. I'm not trying to diagnose. Just sharing info you may not have seen. hopefully you will not experience the same on this vacation. Beyond a shadow of a doubt though, fatigue has a significant impact on dystonias (and I would guess Parkinson's).

FWIW: What your trainer suggests (more walking or pizzas) makes absolutely no sense to me and honestly seems quite illogical. The only thing I could remotely see more walking help is perhaps stamina but it seems to me that wouldn't necessarily be beneficial with Parkinson's which itself, has got to be tiring.

I'll ask though you don't have to answer/explain: how effected is your motor movement at this time? I had an aunt and a cousin (son of another aunt) who both had Parkinson's. My cousin was older (50ish??) when his was diagnosed but my Aunt Eleanor was young. I'm guessing in her 20s. In the 60s I recall that it was mostly her fingers (left hand only) that were involved. She would squeeze a small rubber ball to keep her fingers flexible. I don't know that it helped but she did it all the time. She was a registered nurse for many years as her Parkinson's progressed very slowly. Her's for many, many years was hemi, left side only and because it was left side versus right she remained independent, being able to drive since her right leg and foot functioned fine for a very long time. I know a couple of guys (both men) locally with Parkinson's. One had DBS (Deep Brain Stimulation) Surgery but did not have positive results from it. Hopeful but alas it did not help him. It's interesting to me that more men than women have Parkinson's and more women than men have Dystonias.

I don't know that there is much more understanding of Parkinson's today than there was 50 years ago. Is there? I was very hopeful when Michael J. Fox started his foundation that there would be life changing discoveries regarding Parkinson's. A million people reportedly have it and so little is known...sorry so long. And sorry if too personal.

Bob314159

Thanks for the very detailed answer.

I have tremors in my left hand on and off. I've had them for 2.5 years - a ketogenic diet seems to help - I've managed several times to go for weeks with only minor tremors. It gets worse with stress situations. I'm a lousy typist and the tremors makes my typing much worse - otherwise no real side effects. I'm taking no medication. In retrospect I've had Parkinson symptoms for years - just nobody connected them e.g. 99% of my smell is gone and I've walked without swinging my left arm for over 20 years.

I get ocassionaly left leg spasms falling asleep.

I used to walk at 3.1/3.2 mph - now it's more like 3.0 - but that requires focused intention - or I can degrade to shuffling. Also biofeedback gets confused - this morning I went for a 30 minute walk - felt like was walking in slow motion - but both my Garmin and Fitbit said I was over 3mph.

I started doing weights about 1.5 years ago - and my body in general is better than its been in 40 years. My trainer has added exercises to get left/right co-ordination for Parkinsons. My weight is the lowest its been in 33 years.

I also do things like building Lego using both left and rights hands.

kpk54

It is really strange that bit about no sense of smell and not swinging your arm when walking. I was reading about that the other day and thought it odd that it is a common symptom. Those of us with Dystonia have some really strange common things too such as sensory tricks to straighten our heads. Many can touch their cheek to straighten their head but that never worked for me. The common one that works is wearing a hoodie. For some reason having something on my head or restricting peripheral vision works. There was a time wearing a visor helped but not so much any more. When my rigidity returned after being so minimized the 1st 6 months of keto, I found myself making sort of a "c" with my left hand (index finger) and placing it over my upper lip and my thumb beneath my chin and it straightened my head/neck. I'm not sure how long I did it before I noticed doing it frequently.

Interesting too it is your left side. Same with my aunt and the guy who had DBS. Not sure about the other 2. All I can recall that I've met who have Rotational CD/ST, are "right turners" with the left muscles, primarily the left SCM, being the overactive muscle causing the turn.

I'm glad keto is helping you. Any time I've talked about my food choices to others I have referenced the effectiveness with Epilepsy so someone could Google it. Otherwise they'd just think I was whacky.

kpk54

Oh, and thank you for sharing. Opened my world to a whole new rabbit hole regarding exercise for neurological disorders/ diseases (specifically Parkinson's). There is a huge amount of info on line. I perhaps need to step outside my comfort zone.