I would like to talk./write to someone who has CA and tremors..Apart from no mobility and speech the tremors started this yearr..Are these part of CA?I find this symptom the most debilitating of all..It impacts on eating and I have to be fed llike a baby.AAlso it makes using any keyboard difficult to use;difficulties with Augmented Communication Devices.Is there anyone in a similar boat?
Does anything help?
I daily pour moisturiser on my palms then rub it into my arms,wrists,fingers,neck and face..I then clench and release my fists a few times,twickle my fingers,touch my nose etc...Infact,Ive greatly improved my tremors(they were bad,like yours are becoming) by going all guns blazing into a healthy life slyle !!The smokes and heavy boozin' are gone (9mths)..Good balanced diet,moderate exercise plus a Multi-Vitamin..
Ataxia shows no mercy on couch potatoes doing nothing about their symptoms,waiting for a cure..Go for it Marie,together we can LiveWithAtaxia..Ozzy
I’m currently not suffering with tremors. My grandma had severe hand tremors too. She also had CA.
Hi, I had hand tremors and am on medication, they have now gone away! The medication is called NEUPRO and it is a patch that I stick on my arms, also recently went on LEVODOPA which keeps all medication topped up and helps with restless legs and insomnia!
I advise anyone with tremor problems to ask their neurologist about these.
Marie, i agree with Vintag Chick, ask your neuro, as there are medications to help tremors. I was diagnosed with Sporadic Cerebellar Ataxia (symptoms 24/7, unknown cause) twelve years ago. and started having small tremors in my hands/fingers. They're not bad enough to take any medication. I do think tremors go along with some ataxia's. Ozzy has an interesting way of dealing, so you may want to try that first. I hope you get some relief very soon! My best to you..., ;o)
How do you get a neurologist to try levodopa, I asked to try it to see if it would help what I perceive as bradykinesia and was told I do not have parkinsons so I could not get this med. I walk now very short steps or feel glued to the ground, I walk in slow motion very slow like a sloth, Im just not as cute. The doctor wont use meds as diagnostic tool to find out if you can be helped or not. I don't have tremors but do have shakes in some types of movement in my left hand.
Hi, I don’t have parkinsons but that is the medication used to treat my ataxia. I think you are going to have to be quite firm and explain that you can’t go on the way you are doing. The medication really makes a huge difference. I hope you get somewhere with this.
How do you get a neurologist to try levodopa, I asked to try it to see if it would help what I perceive as bradykinesia and was told I do not have parkinsons so I could not get this med. I walk now very short steps or feel glued to the ground, I walk in slow motion very slow like a sloth, Im just not as cute. The doctor wont use meds as diagnostic tool to find out if you can be helped or not. I don’t have tremors but do have shakes in some types of movement in my left hand.
I have very strong hand tremors in my left side, but am not on any medicine. Doctors said the available medicines are for Parkinson… I can use my right hand with no problem, so So all I can offer you is this website describing,with a little video, a spoon invented last year for people with Parkison’s disease. http://www.google.com/liftware/
The price is quite high though (200 £) but if you can afford it, it might be a valuable tool for you to try.
I hope you will be able to get some help. Take care and best wishes:-)
PS you ask if the tremors are part of CA. My ataxia was caused by a cerebellar stroke that destroyed a third of my left cerebellum. So for me, these tremors, which started the instant I had the stroke, are definitely part of my cerebellar ataxia.
From what I have read on this forum, not everybody gets them. All patients react differently. This is why, a medicine that works for one might not work for the other. Everything is worth trying though…as long as there is no negative side effects…
I too have tremors of my hands. It can be quite frustrating. I have had cerebellar ataxia for close to 20 years. I have tried low dose propranolol and find this makes a very big difference.
Levodopa is the way to go, works for me, can still kinda write
Thanks everyone for your tips.I have been eating a healthy diet for 35 years and I have had no alcohol for 10 years.While I agree that both these thingss make you feel much better I don't think they are at thre root of the problem.I have tried both Propranolol and Levodopa but they had no effect.Admittedly the Dr said it was a very low dosage so I will go back and try a higher dose of Levodopa. My father had Parkinsons for about 15 years but although the Neuro knows this link there is nno evidence that I have inherited this.Our tremors are totallly different.
All I can think is that both my father and I both had a Neurological problem in our 40s.Dad had Levodopa as a drug but that was in the 70s.There seems much more that can be done now.
I never remember my father or anyone else with Parkinsons having such a violent tremor.I shall certainly persevere now that I know it can be helped.
Marie, there are tremors and tremors… Mine are intention tremors. At rest, with my left hand on my lap, I look completely normal. When I try to reach for an object, my arm shakes in a very wide amplitude movement, very disordered and hard to control. Then when I reach the object and finally hold it, I squeeze it and have to think very hard to release the grip…Parkinson’s tremors are there all the time, but with smaller amplitude.
I think this is why these tremors are hard to treat. I read that some of the ataxia tremors have been treated successfully with Parkinson’s medications. But as you said yourself, you tried two medications which did not help you, but helped others… So who knows…
I was at a Parkinson meeting where a patient that had bad tremors and had a DBS wired into the brain and he demonstrated turning it off and on and when he turned it off he cut loose and showed how well the DBS worked for him a change like night and day, I think this would be superior to any pills to tell the truth. Jerry
Mine are intention tremors too Cicina.What do you do? Are there any medications which work.What dose?
The ataxia specialist I saw , told me that there was no specific medicine for these tremors and that the side effects of some of the Parkinson’s medications would not be worth trying them. My own neurologist thinks the same.
My own situation is complicated by the fact that I have a rare heart problem which can be affected by a lot of medicines. I actually have a list of all the medicines which could trigger cardiac problems and that I must avoid taking. Since the tremors are fortunately only on the left side, I can manage with one hand, but I cannot imagine having them on both sides like you do. As you said, those tremors are kind of violent and prevent you from doing anything manually.
When my left hand starts acting up, I grab it with my right one and put it down on my lap or by my side. Of course, this is not possible in your case. But the only thing that helps some is when I try to reach for an object, I go as slow as possible and this reduces the tremors.
I wish I could be of more help to you.
I hope you find some relief. If I ever come across something, I will let you know.
Take care, Marie ! Best wishes to you!
I have tremors and hypnoclonic jerks. They’re awful as sometimes I can lash out or throw things especially if I yawn!!!
Well, no yawning then!
I once slapped my husband when trying to put my hand on his cheek! Lots of laughing!
How are you Bev?
Hi All, Yes, Cicina, all you can do sometimes is laugh! I once tossed a plate of food (like a frisbee) across the kitchen! I have somewhat mild intention tremors in my hands/fingers, so I blame this on those. Fotunately, the plate didn't break, as it was heavy china (pottery). I laughed about it, rather then cry..., ;o)
My husband gets worried in bed as my knees jerk violently.I don't remember it at all as the movements are sub-conscious.
Now you mention it ! Every time, I drop my boiled egg onto my lap or floor...with-out fail..If I'm wearing a white shirt,,that's were the soup ends up..I have no white shirts left ?? O' well,I won't talk bout' 'spaghetti' >>>>>