Are there any PWP here that don't have rigidity? I don't mean body stiffness but mean no trouble with handwriting, no cogwheel rigidity in any joints?
I have stiff neck 24/7 and axial (central body) stiffness that affects walking making me slow and off balance but no rigidity as yet. L-Dopa relieves those symptoms. I also have early swallowing and digestive difficulties, throat/vocal cord tightness, occasional slurred speech which are not relieved by Ldopa and shortness of breath that is. I am slow in my thought processes as well and have trouble with apathy, loss of pleasure and don't seem to notice my surroundings much during the day making it a struggle to stay active but I dont feel depressed.
Getting up at night 3 or 4 times to pee and feeling so stiff the first few minutes is getting more difficult as time goes on.
No Neuro support at this time.
Just wondering if there are any with lack of rigidity as well as any of those other things that hang on like glue. Thanks....Linda
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I take a sublingual version of B1. It doesn't need to be HCL because it doesn't go through the digestion. It also isn't affected by one's digestion which can vary so much from person to person, so you don't need so much. I take just 400mg A WEEK. I put it under the tongue and it goes straight into the blood stream.
Thanks for the info. I have a hard time finding B1 in any form except 100mg pills. I'll do a search for that. If you don't mind my asking, what country are you in and how do you order it? Thanks for the reply.
It's made by superior source. I contacted them initially. I now get it from healthmonthly.co.uk. It's also available from Amazon.com. It's B1 microlingual 100mg tablets. I started off with one tablet a day for the first three months. Friends remarked on the difference in me. I didn't notice it at first!
Here is a "bit" of history: It's because I don't have rigidity even though I'm very stiff, that the neurologist (in BC, Canada) seems to feel I don't have Parkinson's disease. He said my stiffness is due to anxiety. He even went so far as to say I should see a psychiatrist. It was very disturbing until I read on RateMD.com that he has many poor reviews and some acusations of abusive treatment.
Levodopa (mucuna pruriens) is definitely helping, (he ignored that and ridiculed all the symptoms and supplements I take), so that's why I'm asking if there are others who don't have cogwheel rigidity. I could hardly talk about this Neuro. visit for over a year as he diminished me to feeling like dirt.
Also, should a neurologist take into consideration prolonged (3+ years) stiffness in the neck, head, face, jaw and central body, (not including joints) and slowness of movement on worse days? I am not stooped over and my handwriting is good but walking and balance are getting worse. He didn't SEE any obvious signs and doubted what I said but I’m not sure I’ll get any better results from another neurologist.
Other symptoms: (tightness in vocal cords, trouble swallowing, tight throat muscles (along with my stiff neck), difficult digestion, ringing in my ears when "off"), all together are incapacitating most of the time but aren't mentioned much on this site unless they happen later in Parkinson's. They are mentioned in the symptom list I printed from this site. They are symptoms of PSP?? Also get toes curling up and Charlie horses.
How could a neurologist dismiss all of that and focus on lack of rigidity? I've only felt anxious when all of this started. I had a swallowing assessment that showed decreased tongue base muscle movement and poor swallowing but he did not review the report even though it had been sent and he quickly scanned it over and said I had a condition called "globus hystericus". I looked it up and it's a medically obsolete term that had been dismissed after a study showed the numerous participants had an organic reason for their swallowing problems. I printed it and sent it to him. He made all of these "judgements" based on one visit never having seen me before.
I read that about 10% of PD'ers have no rigidity. We are so short of neurologists in this area of BC and the wait lists are long so it won't happen again for awhile. I saw him in September 2018.
I take 500 mg of B1 along with a lot of amino acids, etc. that help me as well as Mucuna for over a year now.
Sorry it's so long of an answer but that's it. Nice of you to ask though.
If you feel that there is a possibility that you have PSP then it is probably more urgent that you find a good movement disorder specialist. I would suggest that you do some research with your national PD and PSP groups for specialists in BC.
I have PD with REM Sleep Behaviour Disorder, some rigidity, right hand tremor, loss of right arm swing but no loss of dopamine on DatScan (PD SWEDD). My condition has not deteriorated in 10 years.
I am reading that there are so many variations to PD and yours too in that it doesn't show up on DatScan. So do you take levodopa to try and stop the symptoms? It wouldn't make sense to take it so just wondering what works if anything.
Thanks for the reply and advice. I'll wait until it's obvious what is going on. If it never gets that far then great. Tie a knot and hang on. Thankfully I'm in a good place within walking distance to everything and a small hospital and 1/2 hr. to a large one. Have friends who are close by too so I don't feel completely unsupported.
Not the way that I would go but to each their own. I see a movement disorder specialist at the National Hospital for Neurology and Neurosurgery - a centre of excellence in London.
I'm a little disillusioned with the so called experts. This one I saw IS a movement disorder specialist with some disturbing quirks. Many people gave reviews on him (59). He had more reviews than any other doctor. Reading some of the reviews made me feel physically ill. Others tried to defend him. How would you feel? There aren't that many here to go to.
If I was being affected in the extreme way you were by doctor reviews, I would be thinking about why they were having that level of effect and want to sort that out. Doctor reviews are prompted by a lot of things - not always defects in the doctor.
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