Sway back posture (need help!)

[Racerk]

Am yopd 49 yrs old, gait issue is my main problem, experience lots of shuffling, small steps and sway back posture. From my research, hunchback, smaller steps and shuffling is very common with us b/c of balancing issue. After DX for 1.5 yr, just started CL 2 x per day for 3 wks and not helping at all or feel even worse. Wondering is anyoneelse also suffer with sway back posture? Thanks in advance!

[Bolt_Upright]

Is the CL helping anything?

[Racerk in reply to Bolt_Upright]

Not really, feel worse. CL helps on anxiety and repetitive movement. Dr said might takes 1 month to be effective!Thanks

[Gymsack]

I have PD but not sway back as much as a hunchback. The bells . the bells

sorry you may be too young to get that one

The person who gave you that diagnoses probably used the same reasoning as you just did and then he gave a prescription for CD/LD. For most people, except for a very very few, if CD/LD works to improve the condition than you have PD and if it does not do anything to help the symptoms than you do not have PD but you have something else. The doctor may have prescribed the Medication to as well as help also confirm the PD.

You should contact him and tell him what you just told us.

You may have what is sometimes referred to as PD Plus or Parkinson's like and if that is the case they will determine exactly which one and which course of treatment you need to follow.

Hopefully someone else will comment who also has a sway back. Note that even though the old horse had a sway back it could usually still run, just not very fast. Good Luck

PS I realize now that is not your photograph hahahhaahha

JUST READ

one month to be effective ? not bloody likely, see a Neurologist

get a referral from your doctor ( he has to give you one)

[Racerk in reply to Gymsack]

I hope u are right that I don't have PD, took datscan and confirmed. I also have no left arm swing and some other symptoms, but major issue is my gait.Thanks

[Racerk in reply to Gymsack]

My Dr is a MDS neurologist, I know something not right.

[MBAnderson in reply to Gymsack]

"... and if it does not do anything to help the symptoms than you do not have PD but you have something else."

Not necessarily.

[Gymsack in reply to MBAnderson]

READ it again

"For most people, except for a very very few, if CD/LD works to improve the condition than you have PD and if it does not do anything to help the symptoms than you do not have PD but you have something else."

[Racerk in reply to Gymsack]

From my study, something else would be worse! Thx

[MBAnderson in reply to Gymsack]

I see. I stand corrected.

[MarionP in reply to Gymsack]

For anyone who IS one of the very very few, that person is 100% of his own population. Since exceptions DO exist, you can always be talking to one. One day I bumped into Lindsey Buckingham where I worked in this little out of the way town in Pennsylvania. And it was him! I almost asked if he would do a riff for me but he didn't have a guitar with him. I have a friend who rode the subway to work every day in NYC, and one day opposite him reading a paper was former Secretary of State Cyrus Vance. In the very early 2000s a church acquaintance of mine in my very medium town in the Midwest turned out to have a good friend in California from when she lived there, she often stayed with when out there...named Leon Panetta. Yes it turned out to be that Leon Panetta.

What needs to happen is that "neurologist" needs to see a printout of this group conversation. And then its always a good idea to get a second opinion, which any real physician would happily support and recommend.

[Racerk in reply to MarionP]

Let me try to see another Neurologist for 2nd opinion, health system here in US sucks, lol

[MarionP in reply to Racerk]

Good idea! Best luck!

[CuriousMe12 in reply to Racerk]

Didn't you say you'd had a Dat scan? If so as far as I'm aware if dat shows PD then it's confirmed.

[ParlePark]

yes I did. In 76. Happened when 70. Bad back was inherited. Had 2 fusions, decompression and rods. Long recovery but fixed problem. And I walk as much as I can. Neuro surgeon fixed. My experience. If inherited like me, was fixed

[Racerk in reply to ParlePark]

I used to have some hunchback, sway back started 2 yrs ago. Thx

[Racerk]

Thanks for all your reply! I have less than 1 week to be a month on CL, hope you guys is right that I don't have PD. Especially on my sway back posture, seems like is not PD related. If it is related, I shouldn't be the only one!Thanks,

[kaypeeoh]

The photo suggests a weak back. A weak back was probably my first sign of PD. I was walking a marathon. I was going up a steep hill and kept falling forward as I tried to stay upright. This was seven years ago. Medication has never done much. I'm on Rytary.

[Racerk in reply to kaypeeoh]

Think mine is weak abs and gluteus muscles, thx

[kaypeeoh in reply to Racerk]

So...crunches and planks??

[CuriousMe12 in reply to Racerk]

Try consciously to pull back tummy and butt; along with the shoulders as you currently are.

[Racerk in reply to CuriousMe12]

I hope is that easy, when I push the shopping cart around, am doing fine. Regular walking give me tons of problem, so weird.

[Adlon57]

I have shaking fingers presently, forgetting words, even talking to myself non-coherent, typing worsening, although my left hand which I had lost use of AZ vaccine in 2021, the 'evil' stuff now fully out of my system, but neurologist suggests another DAT scan might confirm🙄 I have epilepsy taken off Epilim in 2016, very bad shaking of hands, had DAT scan then [negative] then in 2021 when reaction with AZ vaccine another DAT scan [negative] Hand co-ordination not brilliant, leg and hands twitching when sitting down, I live on my own , I can't walk too much [broken skull irreparable, brain damage] so no running, always scared my father had PD so VERY wary! I do 2,000 metres on exercise bike each day for well being, age 67, living on my own, so not AWARE of back swaying, am sitting down a lot, using laptop, balance never the best anyway!

[Racerk in reply to Adlon57]

Wow 2000 meter biking each day, good work, stay strong! So you think AZ vaccine causing problems? I think Moderna vaccine trigger my PD.

[MarionP in reply to Racerk]

Anything is possible. Sometimes it IS a zebra.

[Adlon57 in reply to Racerk]

No doubt AZ vaccine caused problem with Schwannomatosis NF3, heart flutters after first injection, Feb 2021 two benign tumours/schwannomas formed started bleeding after second injection April 2021, muscle usage, skin hanging off left arm, down to 10% of normal, severe shaking left arm, slight shaking right arm [in sympathy?] both injections left arm, muscle grew back slowly, almost back to normal [suddenly 1st Feb 2024], biking to help diabetes 2, don't get out much, lack of transport. Had no problem with subsequent Moderna etc, injections.

[Bunny622023]

Hi Racerk,

This is identical to my husband who is also YOPD, dx 37 yrs and is now 61 yrs... he is tall and very sway back, major gait issues. Up hill or down is a problem to stay upright unless walking swiftly or going up and down stairs which is easy for him (bizarre). I wouldn't have thought medication would have assisted this. The core and leg strength are a major issue for the falls as the strength to keep upright is hindered. His walking is normal until he has to stop or turn. The falls are up to 5-15 per day... sometimes less, sometimes more from forward or spinning. He is on 2100-2300mg/day C/L.... it has never helped with falls. I hope you can get some clarity with this.

[eschneid in reply to Bunny622023]

Hi Bunny,

Hope you guys are hanging in. Curious if husband's legs feel jelly-like as mine do at times. Also, how is his dyskinesia at that daily level of c/l.

If you don't mind, how is the DBS holding up with time.

Eric

[Bunny622023 in reply to eschneid]

Hi eschneid, doing ok, hope you are also. Every now and then he says that it's like someone has just kicked his knees out and he goes down. His Dyskinesia's are fine and its rare that he has issues with Dyskinesia as long as we keep his meds in order.

The DBS has been amazing actually for him. Most symptoms kept under control, but some things have become worse... eg Speech and Falls.... but it's hard to say whether DBS has actually made the falls worse. We go back and forth on it..... He never had speech issues or falls before DBS but the speech has become terrible.

[Racerk in reply to Bunny622023]

Imo, the DBS might be too strong and need adjusted. Talk to ur Dr!

[Bunny622023 in reply to Racerk]

Unfortunately it's one of those things where you put the DBS down, something else suffers, eg: Dyskinesias or speech become way worse. We've tried many things over the years and nothing is sustainable for any length of time. We will keep trying though, thanks for your thoughts.

[Meg024]

I recommend Esther Gokhale to get your posture corrected. See her website is gokhalemethod.com/ She did wonders for my back problem.

[LAJ12345 in reply to Meg024]

Here is the book if you can’t find a practitioner

shop.gokhalemethod.com/prod...

[Racerk in reply to LAJ12345]

Thanks

[PDHomeo]

Check out Gokhale Method online. Fantastically helpful for posture!

[robclem]

I have similar issues, I have yopd and was diagnosed 8yrs ago at 44. My symptoms started off with no right arm swing, slow movement and progressed to blephrospasm and then progressed to include gait issues where I lean back when walking. I currently take 2400mg of Rytary and this does help with the gait until it wears off.

I found my off times to be too frequent and also the uncontrollable body movements caused by the C/L resulted in me getting DBS in July last year. This has helped me greatly!!

My doctor is also very confused as am I as to why I have the leaning back gait as that is not typical for PD but rather PD plus but because I respond to C/L I have PD. I’m still researching as it’s an odd and very uncomfortable symptom and I have not heard of too many people with this !!

[Racerk in reply to robclem]

m.youtube.com/watch?v=rVLKt...(Not working as expected?) think is caused by early knee extension, weak gluteus and abs muscles.

Thanks,

[JCRO]

Positive dat scan but C/L does nothing for me at all.

[Racerk in reply to JCRO]

Don't know is good or bad for us, less chance for dyskinesia. But what can we take? Agonist like Mirapex!

[JCRO in reply to Racerk]

I think stick with the C/L as long as you can. I have an addictive personality which might manifest itself as impulse control disorder if I tap into one of the agonist family. Which could have disastrous consequences.

[Racerk in reply to JCRO]

Well, I was on 1/2 dose .75 mg Mirapex didn't really work, did increased to next level 1.125 mg experienced some drowsiness and a little weird impulsive behavior but still under my control.

[Cskhan]

I am not a coach but having battled with pain and movement issues ( I am somewhat sway back as well) have become quite knowledgeable on biomechanics and movement posture is actually more about movement. There is hope I believe.

If you can, try the 'functional patterns' system, some of their results are nothing short of miraculous. This is likely 1:1 coaching in person.

functionalpatterns.com/page...

If not work with someone like Zac couples, he is very smart and very knowledgeable. He does remote work as well

[Racerk in reply to Cskhan]

Thanks, will take a look

[Rufous2]

Has anyone with posture/gait problems tried Nordic Walking? My neighbor (no PD but vestibular dysfunction) has found it helps her maintain fitness, even with balance problems.

[Esperanto in reply to Rufous2]

Certainly, it will help you with that. In addition, it also provides me with more intense exercise, and perhaps most importantly, it is essential, especially for hikes, as a fall prevention measure!

Nordic Walking Can Help Patients in Gaining More Efficient Gait

parkinsonsnewstoday.com/new...