Mystery symptom

My mother was diagnosed with Parkinson's nearly 3 years ago, and I am her full-time carer.

A recent symptom is leaning over towards her right-hand side, when sitting or sleeping.

I am not sure whether I should prop her up with pillows, but she says she is comfortable, and she does not get neck-ache whilst in a prolonged slanting position. 

Have other carers/family noticed such a symptom, and is this normal? 

 

 

Hi Linton

I guess this must be fairly normal because Parkinson`s UK is going to look into the causes of posture problems for pwp.  My husband is curved forward when sitting or standing.  He can straighten but needs conscious thought to stay upright and then it`s only for a short time.  Our physio said the back muscles are no longer responding.

Hope this is helpful info.

Hatknitter

 

Thank you, Hatknitter. I am currently abroad, caring for my mother, and have no access to Helplines for queries, so thought I would ask on the Forum. Yes, my mother does the same as your husband, in that after she straightens, she slides sideways again. She even knits and sews in this position! It was good to hear a response to my query. Best wishes, Linton.

My hubby Leans To the right as well that Is his weak side. it is more noticeable when he is tired or unwell

I have PD and have tendency to lean to the right . particularly when tired.  I'm certain that we change our gait to accommodate changes in the body and like all habits its hard to break cos we get comfy out of alignment. From a physical point of view my pelvis was out of alignment which I'm working on.  It causes me pain trying to "fix" myself and remain upright but with help I will keep going.  It's difficult cos we re trying to retrain the brain which now thinks leaning to the right is normal.  It is frustrating and hard work and it may sound mad but we need to fight back or PD rules! and we cant let itbig grin

Thank you for letting me know, jzygirl.

That makes sense. 

Hi

 

I was sitting on a chair in front of a full length gym mirror doing Pilates (yes, I go to a Parkinson’s Pilates class!) when I noticed something strange: my reflection was leaning to one side but I felt like I was sitting straight. When I corrected my reflection so it was straight I then felt like I was leaning to one side. It was very strange.

It seems my Parkinson’s is affecting how I sense my body; Parkinson’s is trying to shove me out of the way.

dr jonny

http://dialoguewithdisability.blogspot.co.uk

At Pilates, while lying flat on my front and feeling I was straight/parallel with the walls of the room the instructor would come  over and shift my feet to the ...can't remember whether left or right ....and said "that feels better doesn't it"  But I felt completely wonky in the "correct" position.  4 years since dx  nothing along these lines is happening in any other position but I'm wondering if that's what the osteopath meant when he said last week that there had been a very slight but distinct change in the way I stand and walk.  

My neuro explained why I the trouble with my left hip could still be caused by my right-sided Parkinsons because the uneven working of the hundreds of muscles needed to maintain us upright,  throws a strain on the pelvic girdle.

I'm glad Parkinsons UK are looking into posture because it affects so much else.  

 

 

 

Before dx and meds when lying down on the Yoga mat, had the sensation of the mat being wonkybut it wan't.

 

I am going through hell at the moment waiting for a diagnosis...there is one symptom that has me baffled...I just hope that it does not confuse the geriatrician.

I feel as though there is an abnormally high level of brain activity (nothing to do with thought processes) on the motor side of things....it feels a bit like tinitus but more subtle and towards the back of the head. Sudden movement of the head produces what can only be described as an electrical discharge that passes down the back of the head ,neck then down each arm...the shoulders do not seem to be affected. This can also happen unpredictably while moving and at rest.

Now I would have thought that lack of dopamine would decrease motor activity in the brain not increase it..so it could just be that over production of dopamine could produce the same symptoms as under production.
That my friends might open a whole new line of research....for now I just need to get a diagnosis so that I can move on.

 

 

Peter

Hi that happened to me too. I was always leaning to the right.  My consultant looked into this and said it was called 'the Pisa Syndrome' (leaning tower !). I thought he was taking the 'Pisa'  at first but no, he was right!  He changed my meds and I lean over no more!

Hi  What meds did he change u to.  It really does put your body under stress when u try to fight against this pull to the right.  This is a positive that you don't often get with this "lean"

Hi Jordiegee,      You are so right, I was constantly pulling myself up and was surprised that it stopped so quickly.  Doctor prescribed stalevo and don't lean over at all now .  I continued to use 2  rotigitine patches a day and at night time I take 2 slow release madopar.  Hope this can help you too.

 

Thanks for replying Aulmay I found your response really  interesting.  Can I ask u if u have problems with muscle rigidity, dyskenesia or difficulty with "off" time.  As we are always told, and it is true, we are individuals with no two alike my pd nurse is not sure that stalevo would be right for me because I am not progressing in a "typical" pd way for the time I have been diagnosed, in that where medication can help is not always the area that I have trouble with.  I hope this makes some sort of sense to u!  I was diagnosed after couple of years of tests in 1997 when I was 42.  This lean is something I would luv to work on and hope u may be able to add to the info given.  Anything u want to ask me feel free if I can help I will

Jordiegee

Hi sorry it's taken so long to reply..it's been a busy week.  I was diagnosed 8 years ago but must have had pd  for at least a couple more! I suffer from very painful joints and the muscles in my arms feel like something is twisting . Also get the same pain in knee to the extent I can't walk far and am now in a wheelchair most of the time. I only get the usual shaky hand but recently I have been having strange dreams and hubby says I yell very loudly in my sleep.  I also get very moody at times and the slightest thing sets me in floods of tears but I mdon't know if it's all down to pd as you say .. It's a strange disease."  I will be 67 in 4 weeks  and use rotigitine patches, stalevo and slow release madopar at night. I got this prescribed because I was having a lot of cramps and toes curling in bed.  Keep in touch and let me know how you are .

 

Hi my turn to apologise for delay in getting back to u.  I have an appointment with pd nurse next week and will take note of all u info will let u know outcome.  I too can shout and yell at night usually something has happened to stress me when that happens. Dont talk to me about emotions they are so near the surface it took me by surprise I think i have times when could keep Kleenex in business.  The frustration of this horrible condition is a great one for tears but you know what they say better out than in.  Will keep in touch