Despite what you think I will not just write about me and my ataxia on this blog.
ME, ME, ME.
I’ve already thought of so many ideas that encompass other ataxia patients.
I have thought of a series where I interview some ataxia patients so we all get an insight into their lives. The good, bad and the ugly.
I have also thought of being available for patients to call me and just vent. Most of the times, patients are isolated, lonely, misunderstood. Sometimes a non- judgmental ear and kind conversation can cheer you up. Someone just allowing you to vent makes you feel better.
But since I am jobless and have to pay my rent, I have to do 100 other things in the month to do that. I can actually write daily (I have no shortage of ideas) but those other things take me away from my blog. So bear (not bare) with me. I wish I could write daily but if I do that I will be sleeping on a park bench and I need WIFI!
Someone left a comment asking about treatment of ataxia.
I am not a doctor and really, I’m not recommending anything to anyone. So please don’t read something on my blog, take some medication, have your leg fall off and come arrest my ass. No please wait for approval from your neurologist. Sign this waiver here that if your ataxia gets worse I am not responsible. I am dead serious.
But this is my story.
I have a knack for research since I blog and have to do that for most articles. So gathering this info was second nature.
When Elizabeth was alive, I started finding out how to help her. I joined the national ataxia foundation support forum (bulletin board) and met Bear whose wife had ataxia. Bear tried anything and everything for his wife. He is very technical and does not know how to water down his science terms but he knows his stuff.
Before I saw my neurologist in Stockholm at the end of February, I went to buy the supplements Bear used to drum into me.
Vitamin D, Zinc, Magnesium, The B Vitamins (a deficiency of vitamn B12 can actually cause ataxia) Omega 3. Coenzyme Q10
In January I also watched a YouTube video about Linda.
She’s a radiologist in Nebraska. She was diagnosed in her 20s and was told she would be in a wheel chair by 40. She did not say how old she is now but she still walks. Not with a walker. She is past 40.
I was like, “This is how I will be with my ataxia.”
So I emailed her and she sent me this.
I am so sorry to hear about your recent diagnosis. I know it’s frustrating and very scary to have a future out of your control. There are different types of people in the world – we’re obviously fighters. I have days that I get down but in general I stay focused, positive and try to enjoy life while helping others too. I get satisfaction if I can help even one person adjust to their disease and live life a little fuller. I get encouragement just as much as I give it. I guess they say what goes around comes around.
I hope you can be the champion of ataxia for your family and lead by example. I am rooting for you and based on your response to the diagnosis I believe you have a lot of energy and spirit.
Here are some things that may help with ataxia.
First, there’s exercise. You need mobility in your joints so they are able to move properly for balance. A stiff ankle or knee leads to falls. Yoga helps. Plus keeping your core strength up helps your torso from being so wobbly.
Second, do anything to makes you work harder to balance. The more you practice balance the better you get at balance. Stand on this foam pad everyday. Stand on it with two feet. Try to lift up one foot and stand on one foot. Do it in front of a counter so you can grab on if you lose your balance or have someone behind you to spot you.
Third, eat better. It’s amazing how food influences your health in general. The less inflammation we create in our bodies the healthier we are and the less the ataxia affects us. Read Wahl’s Protocol or watch the Ted Talks by Terry Wahls, MD online. Bottom line cut gluten and dairy out of your diet immediately.
Fourth, take supplements.
I take a bunch of supplements.
IV glutathione http://www.gwcim.com/services/intravenous-therapies/
which needs a physician to administer
low dose naltrexone http://www.lowdosenaltrexone.org/
also needs a physician to prescribe and a compounding pharmacy to make it properly
Things you can get over the counter (really online)
Protandium https://www.lifevantage.com/products/protandim/ – you will need to find a distributor 2 of each type a day
Atrantil https://atrantil.com/ 2 twice a day
Vit B complex http://catalog.designsforhealth.com/B-Supreme-60-Capsules 1 a day
Vit D – get your level checked. For neurologic disease ideal is around 100. The average person is 20 – 70 and your average doctor that doesn’t understand ataxia will think that’s fine. But no, no, no. We are not your average person and the Vit D. is essential for brain function. We need much higher levels to function properly. I take 14,000 units a day to get mine up there. Once a week I take 50,000 units then every other day of the week 14,000. Much higher than what they say but I look at my blood levels and adjust to keep it around 100. http://catalog.designsforhealth.com/Vitamin-D-Complex-60-capsules
http://catalog.designsforhealth.com/Zinc-Supreme once a day
Magnesium http://catalog.designsforhealth.com/NeuroMag-90-capsules – 3 times a day. I also use Ancient Minerals Magnesium oil. I spray 3 pumps behind my knees before bed each night.
Biofilm defense – take this for 6 months to help clean out the lining of your bowels from all the build up of gunk that happens over time. http://www.kirkmangroup.com/biofilm-defensetm-capsules-60-ct.html
DHEA http://catalog.designsforhealth.com/DHEA-5mg-180-capsules once a day
Fish Oil http://supplementfirst.com/Metagenics-OmegaGenics-EPA-DHA-500.html?gclid=CjwKEAiArIDFBRCe_9DJi6Or0UcSJAAK1nFv6XoBsVEGiRxsN4cpbokW6txv4AAZ0EAkkEXFr42hbBoCTpnw_wcB 2 twice a day
Testosterone – get a pellet inserted every 3 – 4 months. The increased testosterone will give you increased muscle strength and help with fatigue. The muscle strength is important cause we get so weak.
They supplements are not created equally. The FDA doesn’t monitor the manufacturing etc so the quality differs. I included exactly what I take so you know the brand, etc. I realize it gets pricey. If you were going to cut it down and do the most important ones.
In order of importance – Protandium, Vit. D, Neuromag, testosterone then the rest
Fifth, you should see a functional medicine doctor not a regular doctor. In the Omaha area Dr. Jim Biskup of Bellevue Family Practice and Dr. William Ingram. Ingram does the IV glutathione and the low dose naltrexone.
Ataxia has an autoimmune component to the disease. If you can control some of your internal desire for you body to fight itself you will slow down progression and even can reverse it. I have.
That’s a lot of information. Please let me know if you have any questions. Incorporate things one at a time.
The supplements try to add one at a time. It gets frustrating to start taking them all at once. It’s overwhelming. Start slow and add one a month at a time to see how you feel.
Best of luck. Stay strong and keep fighting.
She also has a balance vest.
It’s by Motion Therapeutics. It’s called balance wear. You need a certified physical therapist to fit it and it needs adjusting over time. I absolutely love mine and find it extraordinarily helpful.
Please email them and ask for Cindy. She invented the vest. She knows me and tell her I told you to contact her. She’s fabulous. I’m not sure what can be done but I was contacted by a gentleman in Australia and he has a vest. He came to the US to get it fit though.
It was good to know some supplements on Bear’s list were on her list. Some of her terms were too technical for me but blame The Real Housewives of Atlanta. But use google if you have to to get the gist of her email.
PLEASE NOTE THESE THINGS WORK DFFERENTLY FOR DIFFERENT PEOPLE. YOU MAY HAVE GOOD RESULTS WITH SOMETHING OR NOT. AND DON’T GO DISTURBING LINDA. SHE’S A BUSY WOMAN.
I also watched a video from the 2016 National Ataxia Foundation conference. Dr. Susan Perlman was discussing Management of ataxia Soup To Nuts.
She is the number 1 ataxia expert in the USA. She is my neurologist’s mentor. She came for his PhD thesis defense. Watch that video and take notes. It only has 278 views. What have you people been doing? Yeah, complaining about the way you can’t have pizza. Dr. Perlman is on top of ataxia research.
She has a slide with all the current medications being prescribed for ataxia and it was funny Dr. Arce (my neurologist) mentioned one of them.
I recently went on NAF’s bulletin board and Bear was shouting about trehalose. Don’t ask me what it exactly does. Something about treating SCA3 which I have.
I found this on wikipedia. On January 18, 2017 BioBlast Pharma announced completion of Phase 2a clinical trials of their medication, Trehalose, in the treatment of SCA3. BioBlast has received FDA Fast Track status and Orphan Drug status for their treatment. The information provided by BioBlast in their research indicates that they hope this treatment may prove efficacious in other SCA treatments that have similar pathology related to PolyA and PolyQ diseases.[2
I found this powerpoint presentation by BioBlast. It’s very technical.
My poor brain watches too much reality TV to cope. How you doing? (Wendy Williams)
I have been having fatigue that gradually has gotten worse. Our cells really have a problem getting energy to fuel our muscles. Terry Wahls talks about mitochondria and myelin.
My smart ass friend Mark from California talked about ATP… don’t know what that is. He told me and I forgot already.
All I know is our cells don’t get energy the way regular people get energy. So we have to circumvent this. Some people get good results from using coconut oil daily. Add like two tablespoonsfuls to your smoothies. Start with a teaspoon or half a teaspoon because too much at once will mess up your tummy.
Apparently coconut oil somehow gets energy to the cells.
My ataxia gets bad when my energy levels are low, or I am very hungry. I have a visible tremor. Ii can’t work out. You have to keep moving otherwise your muscles will atrophy. I need my energy to go to the gym. To have a strong core. To work on balance. You can’t be overweight with ataxia. Ataxia cant accompany a secondary disease like diabetes n your body.
You need exercise, exercise, exercise. Do not underestimate how important this is. My Scottish friend Phillipa vouches her Cross Fit training has reversed her ataxia. Mark Aguilera has had ataxia for 20 years. He gyms daily. Like a beast. He is in a wheelchair. Mark is strong and says he wishes he had started gyming years ago. He does not even slur. He annunciates very clearly.
With ataxia, time is not on your side. Time to whine, ask why me, complain about how your neurologist did not give you a hug and ask you to move in with his family. Since there’s no pill to take that will fix it, go to the gym. Get depressed while still gyming daily, ask God why me will working out, cry, wonder who will love you in the gym. Otherwise-no jokes-your muscles start cramping up, get stiff and atrophy grotesquely.
Finally, you need to be the captain of your ship. Remove the responsibilities on your neurologist etc. If you are not concerned about you, then no one will. I met a neurologist 3 years ago. I had studied SCA3 and felt I had it. She did not do the SARA TEST and did not want to order a blood test for whatever reasons. I don’t blame her or allot any complaining time about her behaviour. She is in a job and maybe her most important issue is going home or having a tea break. Plus how many neurologists have seen an actual ataxia patient?
If you don’t like anyone in your care team, change them. Since Feb 22, I am only now getting an appointment with my family doctor in April 11. Not my local neurologist. The Swedish healthcare is free but to see your local doctor they place you in a queue. I have to meet him for him to refer me to a local neuro and a bunch of other people. Bureaucracy. I may be dead by the time I see my local neurologist.
So I am way ahead of them with their processes that need this official letter to authorize anything and everything; my life is valuable to ME. And to my niece. If your life is not valuable to you, trust me no one else will value it more than you.
I however started myweekly physical therapy three weeks ago because that is what is important. I really only trust Dr. Arce and Dr. Perlman with my ataxia. And my physical therapist Rebecca. She works me to a tizzy.
And if I want trehalose I will take it. It’s my life. If I die you think that neurologist who misdiagnosed me will come to my funeral ? No. So don’t expect so much from people. Watch Dallas Buyers Club. It has very explicit scenes that my poor eyes were blinded by but the point is he stopped taking a drug that the FDA approved that was poisoning people and he did his own research. He found out what his diseased body needed and lived 7 years when his doctor gave him 30 days to live. I’m not dissing anyone, just saying.