Parkinsonian syndrome need help

I have previously been diagnosed with post thalimic pain syndrome as the reason for my intense stiffness in my stroke affected leg and arm. This was at first referred to as spacstity. Then not because it wasn’t “velocity dependent”(?) Now, at a recent nuerology appointment I was told this rigidity and new hand tremor could possibly be parkinsonian syndrome and I am absolutely devastated and scared. Do doctors just not know enough about the brain? Is there any hope this tight rubber band feeling in my leg and stiff arm can get better? Im seven months post and still working hard in therapy but could use some thoughts, feedback, encouragement, ANYTHING as this stroke journey is so far, the great unknown.

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@Mbhope my thoughts are with you, unfortunately I don’t have any experience of Parkinson’s syndrome to offer.

Best wishes, take care

I think you are right, the doctors don’t seem to know much about the brain, they have said it could POSSIBLY be, so at least they haven’t said definitely, which I know is not much help to you. It is still quite early days for you, this stroke business is such a long process.
Keep your chin up, will be thinking of you.
Jane.

Thank you for the replies. I am feeling quite sad and overwhelmed today and appreciate the kindness.

@Mbhope i remember my physio telling me that they only understand about 10% of what a brain can do. No wonder the drs sometimes don’t know whats going on.

Are they going to do some more follow ups to identify for sure what the issue is?

There is still plenty of hope & time for things to improve. Stay strong you’ll get through it. It is so tough when you hear all these diagnoses / potential diagnoses though isn’t it. So much to take in & at a time when you feel least able to deal with it.

Sending you lots of love and best wishes.

Ann xx

@Mrs5K
No follow up, just one medicine after another. They are guessing. I have simultaneously plateaud and feel so down. Sorry to keep telling everyone this. I am though now back up to 3 hrs of outpatient therapy finally at a nuero based center at a hospital. As I probably said before, I can walk, drive, etc but am far away from being able to do a lot of what I did before. I’m hoping to see some progress with either the pain/stiffness, or maybe more importantly the endurance/leg balance and arm ataxia. Just anything. Recovery initially was so swift even though I have never stopped working really hard as I’m sure you all do too. You are all so warm and welcoming. Please know that the information and understanding really keeps me afloat.

There is hope and you are in the early days of recovery. I am 7 years post stroke and have spasticity in my left shoulder and a jerky arm. My left hand still lacks sensitivity but I can use it. I am sure my jerky arm inset Parkinson’s, but a result of the stroke. Speculation breeds fear, don’t give in to it. The neurologist only suggested it might be Parkinson’s. It ain’t necessarily so.

maybe ask gp to refer you to muscular skeletal physio might just help

@Mbhope try not to get disheartened. It is common to plateau after an initial surge in recovery. Keep going with exercises etc as it will be helping even if it isn’t obvious to you. I know i’ve had times where i’ve thought i’m not making any progress then all of a sudden I notice a big step forward.
I hope you find the neuro therapy really helpful.
Sending my best wishes.

Ann xx

Hi Mbhope
I was diagnosed with an incidental/resting tremor owing to the damage sustained with my stroke as it also damaged the Rubrill part of my brain . It was established after a while that thankfully it’s not Parkinson’s though very similar attributes it’s a 24/7 tremor that makes my daily chores more of a task than a chore & spillages ect I’ve learned to wipe up & continue I guess but so so annoying that for a long time I was sweating an inanimate objects out of pure frustration
with my weekly physio at the hospital they call the balance class where in learning my body all over again simple tasks of picking up objects even opening doors /walking. The list is endless . They call it control :flushed: then my gym/swim . I’m sure all these intensive do better initiatives has small rewards but I personally see very little change of in honest but battle on as it scares me to give up & become isolated within 4 walls . I can sympathise with your own ups& downs & from one shaker to another :joy: you do learn to live with this & adapt .
I’m been on Carbidopa-levodopa medication for over a year now which im told is a Parkinson medicine which with the rest of my stroke medicines I feel like im sure others on here a mobile pharmacist :+1:t6:
stay strong & may overtime you are able to adapt
Best wishes Jordan

Thank you everyone. And yes, it isn’t Parkinson’s the Dr said, but there is a syndrome resulting from strokes in the basal ganglia/thalmus area that can mimick that disease. He did prescribe carbidoba/Levodopa as well. I don’t think it works for the stiffness like he had hoped. The longer this I go on the more evil I think strokes are. I really appreciate the feedback. For some reason I am not surprised that spacstity in the arm does not improve. It seems like dexterity/control of the upper limbs is much harder to regain doesn’t it? Anyway, please know how helpful this sharing is for me.

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@Jordan Does the carbidoba/Levodopa help you at all with the tremors or possibly rigidity?

Slightly I would say . It was only y/day I went to see a Neurologist specialist who wants to try Botox injections on me to try calm the tremor down even more so telling me the results of this procedure has very good results so February next year I’ve an appointment for that . I said jokingly as I always thought Botox was for the Hollywood set to keep the syringe away from my lips :joy: how he laughed . I will of course keep you up to date when this so called miracle injections are administered.
:christmas_tree::santa:

Hi im posting this on behalf of my husband who had a stroke in august i originaly signed up for him but in my name and then couldnt change it to his when he started to use the forum his stroke in august affected his thalamus too amd has affected his right arm hand leg and foot he too has similar symptoms to you and as of yet we do not know where the blood clot came from to cause the stroke which is frustrating he has had a fantastic initial recovery and now seems th have plateaued

His is really tired at the end of every day and finds this difficult to cope with and also the loss of sensation in his hand is driving him mad :angry: he wants to speak to similar people on this long journey thank you in advance sarah and wayne

Hi Sarah and Wayne @Mrsb1 you could sign your husband up with a new profile of his own then he could contribute as and when he wants to or if you go to preferences on your existing profile you could change the user name to one he prefers.

Fatigue is common for SS, it’s only been a few months, so still early days. You need to balance activity with rest periods, try planning a few things each day you want to accomplish, slow and steady, learning to operate at a different speed was one of my frustrations but ultimately I get more done if I spread things out or split the tasks to those that can wait and do them over several days.

Plateaus are common, try keeping a diary of how things are progressing, sometimes the little changes can be missed when they’re small but looking back over weeks/months can reveal progress that went unnoticed.

Keep up with the hand exercises. My affected hand often feels different.

Best wishes

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I am learning that a stroke in the thalmus can cause all kinds of sensations that even the therapists are stumped by. Anyone reading this thread know anyone who recovered from these? I am eager to lend an ear to anyone dealing with this, plus welcome any thalimic/basal ganglia stroke recovery from pain/stiffness stories.
Hope everyone has a happy New Year.