has anyone been told they have parkinsonism instead of dx of parkinsons,or been dx at first with parkinsons then treated for many years for it then had a change of dx to parkinsonism,like i have. parkinsonism,can cause parkinsons symtoms such as slowing down,tremor,ridergty,stiffnesss,and balance problems.there are a few disorders that can produce symtoms refered to as parkinsonism,parkinsons disease is just one of them.so wots the difference?
well typical parkinsons patient has lewey bodys in the brains neurons,when a patient is givern dopamine replacement thearpy for example sinemet meds those symptoms go away.but parkinisum have typical parkinsons symptoms but does not respond to the dopamine replacement thearpy.parkinsonism has two classes.msa is a example.it produces alpa-synuclein clusters in the brain glal cells,protect the neurons in the brain,instead of in the neurons as in the case as parkinsons.involves defetive tau proteins which act as binder of microtubules of cells.a dysfunction in the tau proteins is wot causes psp and cbd. they get grouped togeather under the catergary of parkinsonism cus they have over over lapping symtoms of typical parkinsons disease,and cus dopimine producing cells in the brain are effected in all these disorders.
psp patients have palsy,first a weakness of eye movement looking up and down,as it progresses eyes become frozern and they carnt move them in any direction,which is awful. msa have servere automatic dysfunctions.they carnt maintain good blood presure,and suffer with urine incontinince.this is the parkinsonism i have .symtoms overlap with parkinsons disease and do not respond to dopamine meds. i hope this information can least help some folk out there on the forum,and if you have been told its parkins,or parkinsonism,good luck to all of you
Ali, I am sorry to here you have been diagnosed with MSA, if you have mentioned it before and I have missed it, I apologise. As you say, it is an alpha-synuclien type illness so lets hope that some of the pd research in that area also helps people with MSA. t
Hello Ali - long time no 'see'! I am very sorry to hear that you have been diagnosed with MSA. I should be most interested to know where or from whom you were given the information that a 'typical Parkinson's patient has Lewey Body in the brain neurons' and that dopamine replacement therapy makes the symptoms go away.
Thankyou both for wishing me well.i made this post cus i felt i needed to share my expercece with others who may be going through the same.ab the information was spoke and explained to me and my carer by my neuroligist and pd nurse.i wish you both well yourselfs.and ab it nice to see you posting agin.missed you.
I too would be interested to know where you received this information as it is not what I understand Lewy bodies to be and their affect.
I just Googled to check to see if my understanding of Lewy bodies was correct, (it was, and there is also a PUK leaflet, available online, on the subject.
Hi Ali j sorry to her you've got msa ,im confused I've been dx with Parkinson's stage two but have bells palsey which is horrid around the head.it feels like maggots crawling under the skin and is very painful due to the pressure.ive had hardly any sleep for six weeks and find it hard to get my head on a pillow.im now on levodopa or last three week and I do seem to be stronger.all the best john
Hi Ali, I’m fairly new to this forum and have just read your post, my husband was diagnosed with Parkinsonism earlier this year his main problem is his legs, he walks with his knees bent he can straighten them but after a very short time he back to what he thinks is the correct way to walk. He has recently completed of weakness in both legs and struggles to get out of bed. Just trying to find out if this is a common issue with Parkinsonism
Good morning Patriciajune … You don’t say what age your husband is.
I am 69 & had a positive DATscan about 8 months ago. I have been diagnosed with Atypical Parkinson’s which they say is not treatable & I am on no Parkinson’s medication, although I have tried Madopar & Ropinirole.
I also have recent Peripheral Neuropathy & a certain amount of Arthritis. This is treated by Amitriptyline. This is an excellent drug & has given me a lot of relief.
Peripheral Neuropathy affects my feet, ankles & legs & Arthritis affects my knees & spine. My leg muscles feel tight & my ankles & feet sometimes swollen.
Like your husband my main issue is walking & standing still. If I stand still for more than a few minutes I freeze & struggle to move. I too stoop when I walk & I cannot walk very far. I have no idea why I stoop it just feels natural to me.
Now whether these issues are down to Parkinson’s, Peripheral Neuropathy or Arthritis is uncertain to me. I find that I have good days & bad days & some days something in between.
Hi Steve2, My husband was diagnosed with Parkinsonism earlier this year, his main symptom are his ability to walk properly his walks with his knees bent when I ask him to stand straight he says it doesn’t feel right, if he sits for a while he finds it difficult to walk and if he walks using his walker he. has to constantly use the seat on his walker to rest.
All this came about after he was admitted to hospital in December 2021 after a fall and contracted sepsis which went untreated for three days, the hospital told me they suspected my husband had dementia because he was shouting plus hallucinating, is blood pressure was all over the place and also had a temperature, thank goodness for a consultant that was visiting a patient and happen to pass my husband bed and he stopped and took the time to look at my husband chart at the bottom of his be. I had a call from the ward to inform me my husband was being transferred to ICU and that’s were he stayed for 5 weeks and it was touch and go at one point.
Sorry for the essay, even now if I think to much about it I get angry
Good morning Patriciajune … Sorry to hear you have had so much stress. It must be so difficult to come to terms with. Life does feel so unfair doesn’t it. Probably a lot worse for you than your husband, who is possibly unaware of his situation.
As I said I stoop & struggle to get up if I have been seated for a while. It can take me 4 attempts. I would suspect the stooping & difficulty rising is, like me, a bit of arthritis in the knee joints. I suppose stooping is more comfortable & more natural.
I suspect the stooping might also be a fear of falling over. By stooping he is getting ready to fall.
How old is your husband?
Have you thought of exercise / physiotherapy for him?
Hi again, my husband is 76 yrs old, before all this happened he was a very fit man, I can’t help but think back to 2020 the long walks we went on know matter what the weather was like, along with our holidays abroad. I just don’t know what the future has in store for us.
He has seen a physiotherapist she gave him exercises to do and we do them together 3 time a wk.
