My mother was diagnosed with PSP a year ago and we were told hat she is around 3 years into the disease.
She has all the typical PSP symptoms like speech slur, eye gaze,mood swings,etc
However, recently she has started to develop a pronounced tilt her balance to the left side and this has affected her walking. Her head, shoulder, entire left side tilts towards the left.
Has anyone experienced this symptom? I am not sure if this is a PSP symptom and my neurologist has very little light to throw on this symptom.
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Sanjay
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Mum develops a lean from time to time and has to be supported to stay upright with various cushions. It is usually more evident when she is tired and could be either to the left or the right although it is more often to the right these days.
If you have spoken to your neurologist I assume he has ruled out other possibilities such as a stroke?
I an not a neurologist but this Parkinson ring a bel? They diagnosed Parkinson on the right side with me before I got diagnosed with PSP (have all the symptons also) and I tend always to go to the right side. You have to ask yr neurologist!
My Mum does the same thing, and she also favours her left side now, even though she's right-handed. She also tends to stand (even when supported) with all her weight on her left leg, which makes her balance even more precarious!
From what I have read on this site and from watching my husband's PSP progress it seems that leaning to one side or the other is very common. With my husband it varied from day to day but he could also go for days or weeks and not lean at all. Sitting in an armcair rather than a couch or dining chairs without arms certainly helps. He never seemed to realise that he was leaning and never tried to correct it himself.
My late-husband Richard had PSP and as the disease progressed; say after 3 years, he also favoured his left side. When he was walking he would have a tendency to walk to the left, so with me holding his arm I was always pushing against him to keep him in a straight line. As time passed he then walked with his head looking down and always turned to the left. I tried in everyway to lift his head up so he could look ahead but he seemed to prefer to keep his head in this position.
I don't believe there is a lot that you can do. People with PSP obviously feel that this is what is best for them. In the same way as, it is difficult to convince them that they are starting to lean backwards and about to fall. Many times I raced to Richard to put my hand flat against the middle of his back to stop a fall and I tried to tell him to lean a little more forwards - but his brain would not let him accept that.
As a matter of interest, he was at first diagnosed with Parkinson's Disease. Two years later after a second opinion, PSP was 'suspected'. After his death some years later his brain was donated to the Brain Bank in London and it was there that PSP was in fact confirmed.
Hi, I am the mother of a 49 year old girl by the name of Gail. In 2007 at Rush St. Lukes she was diagnosed with Parkinson Disease. For 12 years she was prescribed the meds Sinemet, Baclofen, Amantadine, Azilect and Comtan. For years the amount of Sinemet was changed????? In 2015 we had to put her in a nursing home. At that time she was fully mobile but had fall tendencies. She loved it there. She was on "6" sinemet a day. As time passed they put her in a wheel chair. All the time she was on these meds when they kicked in she as all over the place. Feet above head hands and arms wrapped around shoulders or head but she wasn't rigid in the movements. When the meds wore off about 2 hours later she was fine. Could eat by self talk some. Anyway In November of 17 we had to switch to a new neurologist close to our town. The first thing she did was take away the Baclofen (muscle relaxer)??????? Since that time her meds were decreased to 3 Sinemet a day along with Amantadine,Azilet and Comtan.. Her movement then started getting more ridged. In December of last year I told her dr she needed to be re-evaluated. Nope. I knew something was wrong. But she did not listen to me. She could go from her night meds and get up and eat breakfast pretty much on her own, play kick ball, and walk with the therapist around the whole facility, and ride the bike using arms and legs for 30 min. All without meds?? You gave her meds and 1/2 hour later she was sweating, ridged, huffing puffing, red face it was horrible to watch her go thru this. finally on Feb 9th I said NO MORE PARKINSON MEDS. NONE. The next day was the first time I heard her talk loudly and say whole sentences. But it didn't last. Due to the closing of our nursing home we moved her to a new facility. Still No PD meds. She was fine, but she was slowing down.
The LPN said we had to put her back on something. He called her "DR" and put her on just sinemet and baclofen. She was so over the top that the LPN said we needed to call an ambulance. They has not seen her that way. I said yes knowing that it was "normal" for her but way over the top. I thought they would do something to help. They didn't. They kept her 2 days for observation giving sinemet and baclofen 3 times a day. After 1/2 hour they kicked in and for 1hour and 45 minutes she went thru pure hell. The heart monitor they had on her was going crazy from the movements and I was trying to keep her still enough to keep from pulling out a iv and pick line. It was awful seeing her go thru that.
When the meds kicked off she was fine. One the day after we left the hospital we went back to our neurologist and she saw her moving all over the place,,Finally she said she thought maybe "duh" she would have a catscan done and send her to Illinois Neurological Institute in Peoria Illinois. I wanted an MRI it had been 10 years since she had one. The insurance company said no it was to be a infusion MRI, they were going to get to the bottom of what was going on with our daughter. We went to Peoria and within 15 minutes He said she did NOT have PD she had PSP. No cure, no meds. The only thing we can figure out is that the PD meds kept her alive longer. He said 10 years is usually the life span for PSP.
Right now she is happy as she can be, smiles a lot can say softly yes or no, and I love you too, But she has the tilting to the left. She can still eat but we are afraid that later on she will start choking as it leans more and tilts downward. You take these Doctors word for the diagnosis and trust that they know. But as many people have told me she does not look like a person with PD. NO tremors, No jerky head. None of that never has been.
I am just a mom trying to figure out what is next for her. Anyone that can help would be greatly appreciated.
Thanks for all the comments - Helps to understand the symptoms better.
Most of her symptoms have been deterioting but last year she used to choke quite often but now over the last 6 months her choking has considerably improved. Do symptoms rerverse in PSP?
She is not on any typical allopathic drugs for PSP as we are following Ayurveda (Alternate Indian treatment) to manage her symptoms.
According to our neurologist there is no meds that work on PSP. It is terminal. For 12 years the Parkinson meds just might have prolonged her life, but they are not any use on PSP. We are happy for the extra years, but I would never put her thru the hell she was in while on them.
We are new to PSP so any info would be appreciated.
My husband had a pronounced lean to the left with head tilting down towards his shoulder back in 2017. A CT scan showed enlarged ventricles and he was diagnosed with iNPH and a shunt fitted. All symptoms remained and were a much better fit for PSP. In other words he had two rare conditions. The leaning he. still has and he also leans dangerously backwards pure PSP, strange gaze. Aggressive at times. Cannot stand unaided an needs two people to transfer him from bed to chair. Once sitting he would fall to the left if not propped up with cushions. He thinks he does lots around the house but can do nothing. Even helping to fold towels is too difficult. He is now on pureed food which I make for him so the taste is as normal for him. He has really strong grip but finds it difficult to release thinking he has already done so. I need to feed him as he cannot find his own mouth. Messages do not transfer at all. He is very rigid which makes sitting a difficult task for us to manage and toileting to change pads as he leans backwards like a ladder and needs to be helped to bend. All PSP sufferers have some unique features/symptoms but these are some of my husband's by no means a complete list though. Neurologist tells me his is not the regular Richardson's PSP but a more rare type. Hope this helps
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