Todd

[Toddemallard]

I think this is a repeat, but not sure. I have severe ataxia from a stroke I'm in a wheelchair, I have unlimited use of my arms, I have poor speech and vision. Currently, I'm on no meds. Any suggestions?

[Ginger1]

Hello Todd

I'm so sorry you're suffering. I'm on Gabapentin. it's not suitable for everyone but it works for me. Helps with all my pain (as I haven't just got cerebellar ataxia - I have cervical dystonia too), stiffness, nystagmus, (eyesight issues) poor balance, slurred speach etc. I have been taking for 8-9 years. As I say it's not ideal for every person. However there are other things to try. Your neurologist should know.

After doing lots of research I've discovered that Vitamin B Complex is brilliant too.

Co-Q10 may be ideal for you also.

If you suffer from cramp try either bananas & tonic water (it's quinine in tonic but you can't buy quinine over the counter. However your GP or neurologist may be able to prescribe ) or turmeric- I put it in food. it's the CURCUMIN in turmeric that is fundamental. No drugs either

I know it's difficult but exercise is key within your capability & don't overdo it!

Ataxia uk will assist you. If you can't use the phone try their website.

Stay positive.

Good luck 😉

[Toddemallard in reply to Ginger1]

Thanks ginger. I have an appt with neuro on the 22. I am asking for a script of gabapentine. I pray it relieves my symptoms.

[Toddemallard in reply to Ginger1]

I will let you know how the med works for me.

[Mermaidia11 in reply to Ginger1]

That was excellent advice ginger and I agree and take the same

[berejena in reply to Ginger1]

HiGinger1, I too have SCA, cervical dystonia, stifness,nystagmus, eyesight issues etc and was very interesed to read your comment. I must try Gabapentin, I sometimes drink Tonic Water but did'nt know about benefits, I'll drink it even more now, also Turmeric (I have some in cupboard). Thanks

Keep smiling 😁

Berejena x

[Toddemallard]

I think I'm going to try that ginger.

[Mermaidia11]

Hi Todd

It sounds like you have had a particularly challenging time, as stroke as well as ataxia!

But it sounds like you have a fighting spirit, and that seems to be half the battle.

Personally, I have found my journey to be imcredibly stressful; emotionally, physically and financially devastating frankly !

You have come to the right place if you are looking for understanding, compassion, company, tips and comrades in your journey.

This has been my experience and I have been humbled by all of the brave and courageous people here, who have helped inspired and motivated me to try to help myself a bit better

I have found this site particularly helpful and inspiring therefore.. Being in the right place mentally, seems to be the first step in helping to help yourself. Depression is a common side-effect of cerebellum damage and I have struggled with this for a long time.

With this in mind, I can tell you about the things that have helped me to get into a better place mentally. This in turn, has resulted in me addressing and taking seriously My overall symptom management and attempt at brain rehab

Meditation has been a great help to me in this regard.

I also discovered when I started listening to ted talks about brain rehabilitation, it is not just about calming and quieting your brain, but also about stimulating and distracting it in as many different ways as possible.

So I also listen to motivational, inspirational and positive talks which educate and provide me with distraction from focusing on all of the things that I can't do, don't feel like doing and can't get my head round.

There is a time for pity parties (I throw them regularly for myself)

and there is at time for tooling yourself up with knowledge and information to stimulate thinking in a more positive direction and precipitating action, however small. I've come to realise that it is the little things that matter, but they can't add up to big changes.

This in turn; has motivated me to address my physical symptoms in as many different ways as possible – nutrition, exercise, holistic approaches etc

Lethargy, brain fog, apathy is a much under rated negative on our journey. Our brains seem to be like hyperactive children, they need and extraordinary amount of stimulation, attention and distraction. So I endeavour to stimulate my brain in every way possible, to ward off the lethargy that inevitably, leads you to be less able to help you to help yourself.

The rehabilitation of our brains is a multifaceted and complex ongoing challenge.

It is also a solo job, but with the support and understanding this site provides, things do get easier even if they don't necessarily change very much.

I hope that this helps a little bit at least.

flintrehab.com/2016/how-to-...

m.youtube.com/watch?v=sCTgy...(Not working as expected?)

Sending love light and magical healing sparkles to you and all of the warriors here.

[Mermaidia11 in reply to Mermaidia11]

Ps I meant to say that the little changes can add up to big changes…

[Toddemallard in reply to Mermaidia11]

Wow. Well said.

[ddmagee1 in reply to Mermaidia11]

Extremely well written! Thank you for your encouragement and advice to Todd. This site and support group has been extremely helpful to me as well!

[Toddemallard]

You have helped tons. I need people who understand this. I had brain stem therapy. I only showed moinor improvements. I'm going to live in a care facility in Key West. I plan to get a very aggressive neuro. and try meds. Are you on anything?

[Toddemallard]

I got it!

[Mermaidia11 in reply to Toddemallard]

OMG, so you have had a stroke and major surgery? When you say stem cell therapy, do you mean stem transplantation?

And yes, you are right; I have swerved pharmaceuticals to some degree.

I am so sorry that the stem cell therapy didn't work. However, joining the community of Key West will surely assist? When you say Key West do you mean Florida.?

You do know that that is Nirvana for some of us Brits!

Warm weather, warm people and help on hand all of the time sounds marvellous. Along with a neurologist fighting your corner

That sounds great!

We have to put up with cold damp weather and the care of our more vulnerable inhabitants leave a lot to be desired, as our health care system crumbles.

Wishing you the very best of luck on the next part of your journey.

That fighting spirit will see you right

Love light and sparkles always

[berejena]

Hi Todd

Good luck to you with everything.

Keep positive

Berejena