Newly nearly diagnosed waiting for further confirmation - question re medication please.

[PGee]

I have read the Ataxia site that says there is no cure, but there are tablets that can help various aspects of one's symptoms.  My question is that at the moment the symptoms are livable by that I mean that I can do things, even though I am loosing sensation and have the shakes upon occasion and am uncertain on my feet.    Is it worth then, putting off when one starts using tablets at this 'early' stage (and getting use to the drug) and to then to take the tablets later, when the symptoms are less manageable?  (so as to get the best use of the tablets?)    What do people think and what have been their experience?  Also the tablets I have been described cause sickness, vomiting and giddiness.... how do folk cope with these side effects?  Thank you for your input/thoughts.  

[margaretm]

Your question is one which is relevant to all of us and one which most of us will have pondered. We are all different in our attitude to medication and your approach is obviously a careful and thoughtful one. When I have had similar queries, I have always found my GP sympathetic: I know that she cannot tell me what to do but she is sympathetic to my situation and, through discussion, I am able to make my own informed choice.

I wish you all the luck in the world!

[Sqd-2415_hoc]

Hi ya

I have CA - usual issues, regarding meds. The only one I take is Tolterodine as I have urinary tract dis function and they seem to work to combat incontinence

Regards

Rodders

Andover 

[Litty]

OK this is purely my own thoughts on the matter! 

By the way I found a good site for checking if herbs react with any medicines you take is mskcc.org/cancer-care/treat.... This is a very old article too but I found it was quite interesting ataxia.org/pdf/DrSusanPerlm...

Exercise as much as you can to stay fit is probably the best advice. I am not good but my husband and I have a ballroom dancing lesson for an hour most Saturday mornings. I can barely walk and use a walking frame around the house but I can dance! I have a yearly check-up at the London Ataxia Centre.

I started using an extended walking pole to walk with, then 2, now a walker to get around the house and a wheelchair when we go out. I got night leg cramps a few years ago and the hospital wanted to put me on Baclofen ( which did not agree with me). I am quite obsessive and stubborn and so went on line to find an alternative to try. I now take a high dose of turmeric daily and it works. It is only curry powder so you can take a fair bit and if it starts again I just take another. Sorry so long but hope some helps. Not sure anything really works but who knows!?

On a research project I was helping with they suggested taking a high dose of coenzyme Q10. Again it is harmless so safe to take. Omega fish oil is supposed to help but mercury levels in fish are not good so I take a vegetarian seaweed supplement called Opti 3. Resveratrol from red wine is supposed to help too.

Sorry so long but hope some helps. Not sure anything really works but who knows!?

[PGee in reply to Litty]

Dear Litty,

Thanks for your comments.   I have more than enough stuff to research but you have given me more good ones to try!  I admit that I don't like taking regular prescription medicine.   Like you, I think of the whole body natural sort of approach and if it does good, then that is a bonus.  Thanks again.

[nfor]

There are types of ataxia that have known causes already, like Vit E defficiency ataxia, Coenzyme 10 deficiency, or ataxia cased by gluten intellerance. My daughter developed secondary ataxia due to low MTHF levels in her csf. This is caused by a genetic defect in Folr1 gene. She is improving very slowly with Folinic Acid (Calcium Folinate) pills.

I am stating this to give you an idea on how important it is to get proper medical diagnosis on which type of ataxia you have. You can only get this from the consultant Neurologist taking care of you.

Unfortunately one of the problems with all neurological disorders is that even after being properly diagnosed and start the treatment, in most cases the disorder is only stopped from progressing and it is debatable whether you will recover from any symptoms that you already have. Also when there is improvement this is very slow and takes a long time of hard rehab work with Physiotherapy, occupational therapy or other health care professionals according to your needs. Nobody other than your consultant or GP can tell you when to start or stop any treatment for your symptoms. You must keep in mind that your consultant always evaluate between the benefits you are going to get, and any side effects from the treatments you are being prescribed. Thus you should never start any form of treatment suggested by laypeople before discussing it with your consultant or Gp. You must also keep in mind that information given to other patients, or their experiences might not necessarily be relevant or good for your case. Sometimes it happens that a particular treatment  may cause severe problems to a person, even though they have proved to be beneficial to the general population.

I wish you luck 

[PGee]

Dear Nfor,  Thanks for getting back to me.   You have given me much food for thought and it would appear that there is lots of things to consider!   At present I am waiting for some more results and it maybe that will also help the Consultant to know the way forward too.  Thanks again. 

[nigelrheath]

Hi Pgee

Your post has prompted me to respond with some recent thoughts on ataxia and every other neurological condition.

When someone is born with a disability they learn to use whatever they have to make the best of their lives. When one arrives later in life we find the loss of things we took for granted and in trying to overcome  the new and unwelcome condition we use all we have learned to combat it or maybe accept it. Depending on our life experience and belief system. This process is flawed by the 'short cuts ' and deeply unconscious habits we have built up over our life. For example in my case I was having speech problems with slurring and difficulty in talking. Because I have spent 25 years as a physical therapist and psychotherapist I had some ideas about retraining my brain (which is after all where the problem lies). As a parent I remember watching my children learn to speak. More recently I have been observing my grandchildren, too young to speak yet, but keen to make noises. So in retraining myself I began with simple noise not words. I worked on rediscovering my mouth, tongue and jaw.  I used a simple feedback app on my phone to listen to myself from outside my head. I have used my frontal lobes, the newest part of the human brain, to train the old parts, which are the bits which automate action and create habits. The oldest part of all is the cerebellum, chief suspect in SCA! 

To deal with wobbliness I have worked out how to widen my gait, lengthen my stride and keep walking.

To keep general flexibility I do 30 minutes yoga based stretching every morning before breakfast.

I am working on finding a fast track to the brain to accelerate my learning and perhaps help those without my life experience to rewire their brain.

The only person who is with you 24/7 and who can help you from the inside is YOU! As the bbc would say, other help is available, but only occasionally!

As I write this I'm watching the One show, and how to fight ageing! Guess what, exercise and dance come out as the best way to stay fit. Doing nothing leads to immobility, potential increase in falling. Prelude to a new programme on bbc tonight at 9.00pm.

So, Pgee, by all means go for drugs, but also look for ways to retrain your brain.

Nigel

[PGee in reply to nigelrheath]

Dear Nigel,  I am not particularly enamoured with the idea of taking drugs, specially if they give the nasty symptoms as advised!  And, to my mind, taking them this early (even though I have had the symptoms for quite a while of Ataxia) may not help when the condition progresses and the shaking etc., get worse.

Thanks you for the input.   I have had quite a few nice helpful responses and have much to consider.

Pat

[neta in reply to nigelrheath]

Nigel,

Do you really  think we  can retrain the brain? Is this sci-fi or real? Can u give

examples of exercises that do this?? Thanks N

[angelite in reply to neta]

Hi Neta,

This is the concept on which all rehabilitation, physio and cognitive brain training is based, after damage. There are no guarantees that you will get complete function back but may see improvement or reach a reasonable compromise using this method, by making new neural connections/pathways to bypass the damage. It is generally accepted that those who undergo rehabilitation/physio do better than those who rely purely on the brain's natural healing ability. Unfortunately, access to physio can be hit and miss here in the UK but there is much we can do for ourselves to help. The key is patience, persistence and repetition to help new pathways become ingrained. Maintenance of existing skills is equally important. This all sounds pretty confusing but basically means, practice, practice, practice - keeping body and mind as active as is reasonably possible for your particular energy level.

sharpbrains.com/blog/2008/0...

A great example of this was my partner's stroke, which took out his speech and swallowing. That part of his brain died, due to lack of oxygen from a temporarily blocked artery. With time and speech therapy, he learned to speak and swallow again, surprisingly quickly. His voice is a little huskier than it used to be and slightly slurred ( more noticeable when he is tired ) but a pretty impressive fix ! : )

Kind regards,

Angela x

[neta in reply to angelite]

Dear Angela,

Thanks for your exciting response and I will do as u suggest. L,n

[PGee in reply to angelite]

Dear Angela, Thank you. I am awaiting physiotherapy and hope that will give me further contacts and information.

[Davidschafer01]

PGee,

What medications are you referring to?

[PGee in reply to Davidschafer01]

Was on Gamapontin (?) and then a new variation, but on a lower dose, but both made me light headed and "way out". Funnily enough, the tremors seem much better since, but stopped the tablets now, awaiting an appointment with the Neurologist.