A new level of well being. I wish more would try.

[sunvox]

So, I can not describe what has happened to me recently except to say I am feeling a whole new level of well being. People . . . understand I have a genetic disorder that by rights should be forcing me to use a walker by now, and I am living a 100% normal life. Maybe, I'm on to something?? Maybe?

-

The reason for this post is because over the last year, I changed my running on a treadmill from 5.7 mph to 5.5 mph. To me that was proof I was losing the battle so I decided to try subtle changes. What I did was the following:

1) I became a vegan.

2) I increased my daily intake of Niagen from 900 to 1200 mg per day.

3) I increased my daily intake of B1 from 2 g to 2.5 g.

4) I increased my warm down walk from 5 minutes to 10. That means I do 30 minutes of running and 10 minutes of walking PLUS I walk my dogs in the woods meaning I walk and run for a full hour at least 3 times a week.

Those are the changes I made to my overall routine that have enabled me to up my treadmill speed to 6.0. Here is the routine in total:

-

1) EXERCISE: Treadmill running 3 times a week for 30 minutes at 80% or more max heart followed by a 10 minute cool down walk (6.0 mph at 0% incline first and then 3.5 mph and 5% incline) plus additional weight training particularly leg lifts for my quadriceps and kettle ball dead lifts. Daily 20 minute dog walk. Twice weekly upper body weight training.

2) DIET: - I am now a VEGAN and am no longer eating any animal products. This includes no cheese, eggs, or fish. My primary reason for doing this was to control my cholesterol and blood pressure. I still avoid processed foods and simple carbs, and try to focus on fresh produce and whole grains.

3) INTERMITTENT FASTING: eating only between 3 and 7PM

4) YOGA, STRETCHING, and MEDITATION

5) SUPPLEMENTS: (amounts are daily total)

1 cup of Green Tea

40 g trehalose AM in coffee (2 heaping Tbs)

-AM&PM-

1200 mg Niagen by Chromadex (4 pills AM 4 pills PM)

180 mg bio-available curcumin (Theracurmin HP) (1 pill AM, 1 pill PM)

400 mg Ubiquinol (2 pills AM, 2 pills PM)

1333 mg NeuroMag (magnesium L-threonate) ( 1 pill AM,1 pill PM)

2000 mg taurine by Life Extension (1 pill AM, 1 pill PM)

-AM-

2.5 g thiamine HCl/vitamin B1 by Solgar (5 pills AM)

50 mg Sulforaphane Glucosinolate by Thorne Research (1 pill AM)

-PM-

100 mg Pteropure by Chromadex (1 pill PM)

5 mg lithium orotate (the PURE brand) (1 pill PM)

20 mg BioPQQ (1 pill PM)

-

not taken for ataxia, but treatment of apthous stomatitis and general health:

1000 mcg B-12 (methylcobalamin) (1 pill AM, 1 pill PM) (contains mannitol)

1000 IU vitamin D (1 pill AM)

-

[KERRINGTON]

This gives us all a reason to persevere ! Can you recall which supplements were added most recently ? Thanks.

[sunvox in reply to KERRINGTON]

Hi K -

The most recent additions were some 6 months back and were Ubiquinol and PQQ. Before those two it was lithium orotate and bacalein.

[Happyfacexx]

Hi joe

Can you let me know what you have to drink outside 3 to 7? I intermittent fast but eat and drink 8am to 4 pm. Do you just have water for the rest of the time?

Thanks

[sunvox in reply to Happyfacexx]

Coffee in the morning with trehalose which probably negates some of the fasting effect. I tried a glass of OJ also with L-Serine recently, but decided to hold off on that since I am feeling great without it. Also, I am not a fanatic about the 3-7 time frame. I never eat breakfast, but sometimes I will eat a meal around 11-12 if I'm feeling too hungry.

[Happyfacexx in reply to sunvox]

Thanks, and so glad you are doing so well

[tedjohnson]

Hi Sunvox. I take my hat off to you for your perseverance but the majority of us probably can’t stand or walk so am I to understand that your Ataxia has not yet reached this stage? Also the expense of all the various substances you are taking must be immense. I however wish you all the luck in the world but would be interested in your answers. Ted

[sunvox in reply to tedjohnson]

I know for sure many folks on this forum are well past running, but as I have said and discussed many times before, it is clear that ANY exercise is better than none so walking on a treadmill while holding the rails is certainly better than nothing, and I like to believe many folks here are capable of that level. I did a cost analysis and I forget the exact number, but the supplements cost about $200 per month with Niagen by far the most expensive. $2400 is expensive, but SCA is fatal and pharma companies are studying drugs that will be priced in the millions to do the same thing I believe I am doing for $2 -3k per year. I don't disagree it's expensive, but I think it is a value given the alternative which is to say there is NO alternative at the moment.

[suzie44na]

I don’t have a definite diagnosis yet, but if I get one I will be doing what your doing for definite. Thanks

Suzie

[sunvox in reply to suzie44na]

That's awesome! First I hope you never get such a diagnosis, but if you do or if someone else in your family decides to try my routine then I hope you will share your experiences either good or bad.

[february]

Dear Sunvox, WOW, so glad you are 100% better. to me that's truly a miracle!!! I have a question for you, although I certainly won't blame you if you're unable to answer it! I was diagnosed 20+ years ago with Sporadic Cerebellar Ataxia (unknown cause, progressive). In 2017 I had genetic exome testing (over the years I had genetic testing for the more well-known dominant and recessive ataxia's and it was always negative) and a single Niemann Pick C(NPC) gene was found. Therefore, I had a skin biopsy followed by a blood test and was positive for NPC. It was ultimately determined that my ataxia was due to NPC. It was determined I not only have a single NPC gene, but an unknown variant as well. NPC is an extremely rare recessive disease, especially late/adult onset. I was 43 years old when I first noticed extremely mild symptoms of ataxia. My ataxia has progresses over the years. Do you think any of your supplements would help me? My best to you..., ;o)

[sunvox in reply to february]

Unfortunately, the genetic mutation in the case of NPC causes the opposite problem from that in SCA type mutations. The NPC mutation results in the LACK of a particular protein rather than a protein that is bad. My routine and list of supplements are all focused on clearing bad proteins and improving cellular survival.

-

Now having said that I must admit I am curious to learn more about NPC as I am always one who believes in hope, and in this case I would think there must be ways to help the body make up for the missing protein using natural methods. I can't help, but guess immediately at diet playing a key role.

-

Anyways, sorry I don't have any helpful ideas at the moment.

Best Wishes as Well

Joe

[Farooqji]

Thanks Joe for sharing your experience. I am inspired and motivated to include the treadmill running in my routine

[february]

Dear Sunvox, Thank you for responding to me, as I really appreciate it! NPC is a rare disease that effects infants, toddlers and adolescents. For that age group it presents with severe health problems, like an enlarged liver and spleen, respiratory problems, as well as psychiatric (childhood alzheimers) problems. Because of these other severe health problems, they die at a young age. I, on the other hand, have late/adult onset and only have (at this point) progressive ataxia symptoms. Although NPC is rare in infants, children and adolescents, late/adult onset is even rarer. It's a recessive disease which means, in my case, I got a single NPC gene from one of my asymptomatic parents and the unknown variant from the other parent. I went to NIH (National Institute of Health) last year and, through genetic testing, their trying to find out what the unknown variant is. I have two sisters and a brother and am the only one who has ataxia due to NPC. I suspect because we're all 60 year or older, none of my sibs will ever realize the disease, thank goodness!I have two grown children in their 30's and worry a bit about them! Looking back, I had extremely minor ataxia symptoms starting at about 43 years of age, and was diagnosed at 49 years old (finally said something to my doctor, as my symptoms were progressing). Thus, he sent me to a team of neurologists and the rest is history. I'm 65 now, almost 66 years old. I take no drugs for this. What's available for NPC, Zavesca/Miglustat (generic form) is NOT a cure, it has just shown to slow-down the progression of ataxia. I have exhausted all avenues to get this drug, as it's NOT approved by the FDA in the USA, although it is approved for Gauchers disease and for both diseases in several other countries. It's prohibitorily expensive to pay out-of-pocket (about $8000 to $35,000 per month) for it! There are other clinical trials going on at this time, although I wonder about the side-effects. I take CoQ10, Vitamin B and Vitamin D, as well as a multi-vitamin and try to eat as healthy as possible for general health. I do exercise daily(extremely carefully), as I bought a NuStep machine. Phe..,ha!

I reached out to you, as I've read several of your messages and you seem very knowledgeable/ helpful about ataxia! I do realize you have SCA and am so happy for you that you seem to have found the right formula for your ataxia! My best to you..., ;o)

[hope778]

First off thank you so very much for sharing your experience and being a huge contributor to this forum. I admire your multi supplement approach that clearly is working for you and would do exactly the same if this was for me.

I have rheumatoid arthritis and also experienced for years with supplements till I found the right combination for me that I don't take any drugs at all anymore.

However I have been trying for years to help a friend who.already lost her mother and 5 siblings to SCA3 and took care for them but is now herself severely disabled and has no family left to take care for her now. Not able to go to the toilet and get out of bed/eat makes her completely dependendent on help from others. Now she is in a housing care and had to leave her home.

The only thing she faithfully takes is magnesium..for her restless legs.

The problem is she can't take pills herself with her disabled hands and swallowing them is not easy too. So out of all the fish oil, vitamin b complex, d , iron, coq10 in the past, that's the only thing she does take. The staff doesn't help to give her anything other than the doctors sleep tablet.

Other than her multivitamin drinks or in gummy form she doesn't get much in

Still I try to think of other administration forms ..that get to the brain or blood like transdermal patches, eye drops, or nose spray.

My question is out of all promising supplements you know which is most suitable for transdermal purposes or eyedrop/ nosespray solutions or like a transdermal gel to rub?

Thanks for any feedback

[Mneutz]

Hi Sunvox, thank you for revealing your vitamin regimen. I too have SCA 6. I’m 52 years old and using a rollator now. I take vitamin B 12 is B 1 better for our disease?

Also I experience feeling itchy skin all over.

I’m not on any medicines. I too only take vitamins. What are your thoughts? Do you have itchy skin?

My doctor wants me to try Rilozule. I haven’t committed yet.

Thanks Tina

[glenandgerry]

Hi Sunvox, how are you doing a year on? Are you still on this same regime or have you tweaked it a little? If so please can you give an update?

Many thanks.