Ataxia

[swtb]

Ataxia USA? Looking for American residents with ataxia

[NPJOSEPH81]

You found a 37 year old GA resident with sporadic cerebellar ataxia.

[swtb in reply to NPJOSEPH81]

Thank you for your reply. There are no ataxia support groups in my area so I joined a PD support group.

[kathie29]

HI i have cerebellar ataxia I live in CT USA

[swtb in reply to kathie29]

Thanks for replying. I joined a PD support group as there are no ataxia support groups in this part of so. cal.

[popepjp]

I have Episodic ataxia and I'm from Indiana USA

[swtb in reply to popepjp]

I have cerebellar ataxia. Have met only one other person in my PD support group with ataxia. There are no ataxia support groups here .

[Frankfort]

Hello! I have CA from Ohio, USA

[swtb in reply to Frankfort]

I also hv CA and still trying to tweek my diet and supplements, besides following Anthony William, Medical Medium.

[maxco]

recently diagnosed with it last week. In Oklahoma

[swtb in reply to maxco]

You're a newbie. Diagnosed 5 yrs ago and still researching anything that might delay symptoms. Walking at least a mile every day, with my dog on one side and my cane on the other. Following diet protocol by Anthony William, and getting good info on this blog by sunvox. Hope this helps.

[Namitaytrev]

Hi, I have early symptoms of SCA3 and live in San Antonio, Texas.

Anyone else in Texas?

[swtb in reply to Namitaytrev]

I live in very Southern CA, where there are no ataxia support groups. Joined a PD support group for the information.

[Jujubeelu in reply to Namitaytrev]

Sca3 In California

[swtb in reply to Jujubeelu]

I live in SD, CA. No atax support group in this area. Joined a PD support group 4 more neuro info. Following Anthony William diet protocol (8 mo) and this has helped with other symptoms. Good info from sunvox on this blog. No matter what, get your body healthy.

[ninotchka in reply to swtb]

I, too, have just started following the Medical Medium's diet of anti-inflammatory dairy-free and gluten-free. So far after 2 months, no changes. I hope to see SOME improvement, as I have always been healthy and hearty.

[sonofapeter]

51 year old in Seattle, WA with SCA 3.

[swtb in reply to sonofapeter]

Seems that any one with any type of ataxia are few and far between. I live in SD, CA.

[Namitaytrev in reply to swtb]

We are few and yes, far between. There are 2 if you in Southern California though. I’d think worthwhile to see if you are close.

Also, Dr. Susan Pearlman is the Director of the Ataxia Clinic and ataxia clinical trials at UCLA which is about 2 hrs north of San Diego.

[swtb in reply to Namitaytrev]

Thank you for this info. I hv looked at Dr. Pearlman at UCLA. Excited to know that this research is happening. Anyone you know of near SD?

[romain8]

50 year old,unknown ataxia in Snyder county ,pa.

[swtb in reply to romain8]

I have CA and live in SD, CA. No support group here so I joined a PD support group for the information re neuro disorders.

[february]

I have what I thought was Sporadic Cerebellar Ataxia (unknown cause - 20+ years), but found out through genetic exome testing in 2017 that I have ataxia due to adult-onset Niemann Pick C1 disease (NPC). I live in the USA in the State of Michigan. ;o)

[swtb in reply to february]

Thank you 4 reply. I hv never heard of NPC. I hv CA and can't find a support group here, so I joined a PD support group and getting good info re neuro disorders.

[dennisataxia]

I live in Sherman Oaks,California,USA. Desperately seeking advise and interaction with others in my area.Anyone out there,please contact me!

Also, are depression,anxiety and insomnia symptoms of ataxia?

[swtb in reply to dennisataxia]

Hi. I am looking 4 anyone in my area also, SD, CA. I hv experienced each symptom you mentioned plus fatigue and p. neuuropathy, in addition to balance issues. Following Anthony William diet, (8 mo), and no more neuropathy, anxiety, fatigue. Muscle cramps gone with magnesium, insomnia gone with herbs and medical cannabis. Good info by sunvox on this blog.

[dennisataxia in reply to swtb]

Thanks for your response. What herbs have helped with your insomnia? I am also badly affected by claustrophobia....Good luck!

[swtb in reply to dennisataxia]

Hi. The herbs that I take for insomnia are ashwagandha, passionflower, skullcap, (good 4 brain as well), Lemon Balm, and always 3mg melatonin. I take these in a tea with honey. Honey is very relaxing. This will sound counterintuitive but I also eat a few dates 1/2 hour b4 bedtime, and then medical cannabis. No more insomnia.

[cghere]

ataxia in Palm Springs .

[swtb in reply to cghere]

So close and so far. I live in SD, CA, and for such a large city there are no atax support groups here. It seems there are a lot of us with varying types of ataxia, but spread out all over the US.

[ninotchka]

I have (unspecified) cerebellar ataxia, late onset. I live in Sausalito California. Just north of San Francisco over the Golden Gate Bridge. There is only the National Ataxia Foundation in this country. I believe it's in Minnesota. Way far away.

[swtb in reply to ninotchka]

Thank you. I am a member of NAF, get the newsletter. I believe the last newsletter mentioned a mutant protein found in PwA, and researchers are looking at ways to degrade this protein. Not sure this was the source or possibly a post by sunvox on this blog. There seems to be chapters in other states but very few in CA.

[Cubsfan in reply to ninotchka]

Hello all and especially ninotchka! I too have unspecified late onset cerebellar ataxia. I am currently in Marin General Hospital after a slip and fall left me with badly bruised tail bone and elbow. The neurologist here says the best place for ataxia information and sufferers is UCSF. So I am trying to transfer there to help get specific diagnosis. You are the only other person I've heard of in N California suffering similar problems. If you'd like to communicate more please let me know! I was diagnosed 3 years ago and have been doing research ever since. This group has been valuable. I also find physical therapists very valuable. Exercise, proper vitamins, supplements and healthy diet are best I've found to arrest further progress of symptoms. I'm a Marin County resident and would enjoy communicating with you more. All the best!!!

[ninotchka in reply to Cubsfan]

Wow. aren't these message boards fantastic! I do know about UCSF but since I am a Kaiser member, it is difficult to go there, unless they are doing a relevant trial. Last I knew, there was a trial, but not for me. It was for specific SCA numbers which I do not have. If you are lucky enough to qualify for one of these, go for it! I do trust my neurologist at Kaiser because she is new and not yet jaded. We communicate by email frequently. I am practicing good (anti-inflammatory) nutrition, etc, and I am buying a Tall Rollator this week from amazon so I can walk these hills. I know walking is imperative, and hopefully will help my legs as well as my mood. As far as stem cells go, they are not there yet, unfortunately. I, too, have been doing lots of research. Don't fall for those stem cell centers!

[Cubsfan in reply to ninotchka]

Please be careful walking those hills around Marin/Sausalito in a rollator! I had to come to MGH as result of slip & fall 2 weeks ago. I know it's really dificult but I'm going to try very hard to obtain specific diagnosis of my ataxia. They say I can get clinical diagnosis here, and I've had a few MRI's. To obtain genetic diagnosis at UCSF and hopefully more? I hope to know more in the next few weeks.

[ninotchka in reply to Cubsfan]

How did you slip? I am quite strong, but now spastic and uncoordinated. I do have a really strong core so that helps. I have had MRIs so I know what I'm dealing with. My heart has even stopped, as the nervous system plays a big part in my ataxia. I have a pacemaker. Also peripheral neuropathy. Nystagmus in the eyes. Lack of proprioception...you know the drill.

[swtb in reply to ninotchka]

hi ninotchka, I also had peripheral neuropathy, but I believe that my diet, detox, juicing and exercise regime of the last 8 months has somehow taken care of that. It very rarely affects me now. I eliminated dairy, grains, sugar, soy, eggs, coffee, etc., for mostly fruit and raw veggies, plus celery juice and cucumber juice. I also take a boatload of vitamins and special nutrients. I've heard from 2 sources that I need to get my body healthy first, then go after the chronic illness. Makes sense to me.

[ninotchka in reply to swtb]

I deleted dairy, gluten, eggs, soy, corn. I tried that celery juice but eeuuuww, hard to get down! I bumped up my fruits and veggies, all the plant protein I can handle, including the marvelous jackfruit. I still eat grass-fed beef, but not very often. I love fish, esp. wild-caught. Now I'm wondering if I should give up chicken because they eat corn right? And what about wine with dinner? And coffee??? If I give those up too, I may feel suicidal. I am basically oh-so-healthy and have never had any nutritional deficits. No reactions that I know of to any foods. I do take certain vitamins and also collagen powder. My ataxia is at least partly genetic, but I have read that it (and other genetic disorders) can still be lessened by diet.

[swtb in reply to ninotchka]

I also loved my wine with dinner but gave it up too. No corn, even my beloved popcorn. From what I hv read, Epigenetics, including diet, turns on and turns off genes. What is jackfruit and where do yu find collagen pwd?

[ninotchka]

Yes! Saw the post. Whenever I find something, I send it to my neurologist at Kaiser. UCSF is doing trials for ataxia, but for only very specific SCA types. I never qualify.... I stay defiant.

[swtb in reply to ninotchka]

STAY DEFIANT! My PD support group leader sent an article on skin pluripotent stem cell therapy for PwP. The scientist applying for IND beginning trials this fall is a national stem cell expert from Scripps La Jolla. This is exciting to me bc maybe skin stem cells will show promise 4 us ataxians. You never know what may work for us.

[Cubsfan in reply to swtb]

What is a PD support group? I've also been trying to find stem cell info. I am in Northern California.

[swtb in reply to Cubsfan]

I couldn't find an Ataxia Support group here in SD, Ca, so I joined a PD group, Parkinson Support group. Pluripotent stem cells become any tissue in the body, and can now be made from the patient's own skin, so no shutting down the immune system and no rejection by the recipient. A scientist at Scripps, La Jolla has applied 4 IND approval and will start 1st phase of clinicals this year with 2nd phase for 2019. and full approval hopefully by 2020. Congress is being asked to expedite treatment for rare diseases. This is monumental 4 other neurodegenerative diseases, and could help with Ataxia one day. Keep the Faith.

[ninotchka]

Yes! We must stay open to new ideas, etc. . BTW, I am not sure what all those terms mean... "PD", "PwP", "IND". Sorry.

[swtb in reply to ninotchka]

PD= Parkinson Disease PwP= People with Parkinsons and IND= Investigating New Drug

I am glad you asked bc sometimes I think up a short version and it isn't always accurate.

I still don't know a short version for ataxia. AD? PwA?

[ninotchka in reply to swtb]

Thanks! Don't think Ataxia has an abbreviation....

[ninotchka]

Jackfruit is some magical fruit that tastes like meat. I recently bought a "BBQ Beef" package of it at Whole Foods, or Sprouts, not sure which. Absolutely DELISH. It is approved by the nutritional gurus. As for the collagen powder, it's from Amazon. I use the bovine which is the more common and higher in protein. There is also marine, which costs more. Since I'm not vegan, using collagen from cow bone marrow doesn't bother me.

[swtb in reply to ninotchka]

Thanks 4 sharing. I hv 2 go there soon 2 stock up on Wild Blueberries. Highly recommended by my nutritionist 4 any type of condition. After watching the docuseries, The Truth About Cancer, I will be investing in Frankincense Ess. Oil. That and diet healed an 11 yr. old with a tumor on her brain stem. I am very willing 2 try what has healed others.

[ninotchka in reply to swtb]

Trader Joe's has great frozen Wild Blueberries from Canada. I buy them all the time.

That is interesting about the Frankincense oil.