From the Lab Rat’s Desk

It has been more than a month since mom died but I think I am far from “normal” what ever that means in my particular case. I still wake up in the morning feeling utterly drained Once I finally put myself togetheer by 3 or so in the afternoon I have about 2-3 hours of active time to get done what needs doing before I hit the proverbial brick wall again and need to take myself home and sitting down. when my mother ended up in the hospital in February I started running a deficit with most of my active time spent dealing with her illness and eventually her death. Add to that all of the emotional stress, and frankly, I think I did well to hold it together at all. Much of the time I felt I was walking a tightrope where often it seemed a favourable notion to just let go and collapse. I couldn’t though.

My mother had a stroke while she was being treated for a heart attack and it was near her brainstem. Her autonomic system went haywire and I was uniquely qualified to know something about what she was feeling, and I knew that the nurses and doctors did not. She couldn’t maintain body temp, couldn’t signal infection, or wake herself up or remain asleep, choked on her own saliva, and couldn’t lie flat. So I had to keep fighting for her. for a little while she seemed to be making gains, and I so badly wanted her to live.. I was also frightened by the lack of what I would consider reasonable care. Blood tests were rarely done and result never available until a couple of days later. She had several strokes in hospital but only 2 scans. It took several days to put in a feeding tube from the time the doctor gave the order. Des[pite a standing order for pain relief she had to somehow tell them before they would give it to her, r we had to be there. there was only me and my sister available to sit with her and for two plus months we spent more time fighting for decent care than just visiting. I found them however, all to willing to consider the fight unwinnable and go into palliative mode. To this day I do not thank they did all they could have, they cheaped out on care. Just as they did the previous year when despite the doctors and hospital staff insisting my mother no longer live alone,they released her without a place for her having been found. She was not well then but had she been properly taken care of in assisted living she might still be here.

The beauty of government managed care is that the standard drops without there being any competition which demands excellence. this system is a hotbed for mediocrity, doctors a civil servants working to stretch a buck no matter how it affects patients care. Death after all is a positive statistic, it means and empty bed, no more expensive treatments. How can we come expect anything other than a humane expedient death when it all starts to look to costly and the patient brings no income to the table. People who might still be productive are kept disabled and in pain because the treatment or surgeries they would need out-price the benefit in tax income.

Good doctors wanting more that just mediocre civil service go to the US to practice medicine with the latest in technology. Some report back that they are able to earn enough to be able to afford to be generous and do surgeries for free at the same excellent hospitals. the doctors remaining behind are not interested in excellence just a steady income following government protocol using equipment so outdated it is tuned down as a gift to third world nations (MRI machine at St. Paul’s in Vancouver – still being used). I am still waiting for tests ordered several years ago. Perhaps just as well I have no more confidence in the standard of care from a physician here as from a tarot card reader.

Nearly all of the medication I am now being treated with were learned about not from a specialist here, but from information on the Internet which I convinced a doctor to try. What a horrifying thought that one day it will be me who can’t make myself understood, and doctors bungle again and again until it an no longer be fixed at all, then it will be my return for a cheap and expedient, hopefully humane, death. Even if I didn’t have an orphan disease most doctors have no experience with the prospect is terrifying, but I do and that makes it even worse. It will get worse, as most of the gainfully employed have private insurance which allows for more expensive tests and even out of country care, and the wealthy can have whatever there is in the world to buy, stem cells and other experimental stuff. That will be where the brightest practice their medicine, and they cant be blamed for that. The rest of us get whatever it suits the government to allocate for patient care left over after massive administration. No free surgeries here it isn’t allowed to be charitable and compete with the government even for free.

So after months of al this I am trying to get back to being a more settled relaxed person again, back to letting life be the focus of my days. It affected my health, my swallowing was much worse and I am not eating to much, drinking lots of hot chocolate to keep energy up. In the evenings I have some really nasty spasms mostly facial/cranial and in my feet, calves and neck. My reactions are slower and duller than before, but they are improving again, so all these setbacks are probably temporary, they have to be. I have to stay out of the hospital.

To be safe I think we need a handbook for medical professionals in how to deal with persons with screwed up autonomic systems. Those were the problems they were utterly clueless about in my case and my mother’s also. They need to be educated about basics such as having infections with no symptoms other than a general worsening of all other symptoms, needing drying agents to keep from choking, being kept warm, very warm, because if they are waiting for goose-bumps or mottling of skin, it won’t happen at all. Having speech and physiotherapy while bed-bound. we need out heads up, never lie flat and we are likely to have sleep problems. Our processing speeds are slower so give us time, lots of time to respond. Most importantly, treat us as if you would someone with a regular life expectancy, because there are no hard and fast numbers, so many are elderly and so few young that it skews the statistics, if properly treated it may well be that our life spans are near the same as the general public, we are disabled, not dying.

It would have to be written with a medical professional who has sufficient credentials to give it proper weight, but I really think we need one. A patient’s handbook is fine but most of us can learn on-line and from support groups, but the medical profession isn’t overnight going to be trained to include the finer points of every orphan disease, and they hold our lives in their hands at some point, that, unfortunately is a certainty.

I fixed my fountain on the balcony yesterday and planted some lavender in the strawberry pot, I can’t believe it is May, it was all a blur since about Christmas. It is very stormy out tonight and the at is curled up on my lap and I’ve finally had some time to write a decent post, which I have really missed, it’s good to be back.

aletta

Does it Help? – CoQ10

from personal experiences of persons afflicted with a variety of neurological illnesses
*********************************

Personally with CosQ10

Hi Aletta
I have been taking Co Q10 continuously since 1999 but with 1000mg vit C because I had a problem with vit E, which is now resolved and I take 600iu vitamin E with each 120mg CoQ10. For the last 3 years I have been taking 240mg before that I took 30 then 60 then 90 (2001).

If you want to understand Quinones Co Q10 being the one we make, look for papers by someone called Santos at the university of san Diego, particularly the ones about nematodes. also professor Clarke (she) is at the same university.

Whilst I don’t think any effect on ataxia, I am very convinced it is effective in halting the progress of cardiomyopathy, and although not a cure, I have had only 3 angina attacks since starting in 1999. Then again it was 1999 when I stopped smoking. (no coincidence since it was the cigarette money that paid for the q`10), but to go from at least one a month to one per
three years is not just quitting the weed…..

Also when you start q10 there is a fitness boost, and this could be part of why some studies claim ataxia improvements. Also Most of the improvement studies start in fall and end in spring. A fact not lost on me, as I always feel better in spring too.

The problem is that the recommended dose varies vastly between people. for example a ‘normal’ person is recommended 30mg and the same person on statins is recommended 240 mg.

These high doses for ataxias produce far higher levels of q10 than are needed for respiration and presumably address some other unknown need… However seeing as nobody seems to be able to prove any useful results, I, for one, can see no point in mortgaging my life to overkill, for a wing and a prayer. (BTW statins severely reduce coq10 production yet no-one seems to be advised to supplement for it…. why?)

I think 100mg is about the amount of coq10 But I have tried various levels and about 120 twice a day is plenty for me. when I was on 120 per day I only had one angina in 2004 when clearing a room and probably asking for it. so 240 for me is plenty and doesn’t keep me awake, as it does some people. (that was my last real pain, I get a twinge sometimes)

So take the ataxia claims with a dose of sodium chloride…..

B

I have always had to be very careful with recommended/prescribed medications as the side-effects are often worse than the sympton to be corrected. In the case of COQ10, a dose of over 100mg causes severe diahrea but recommended dosage to impact heart function is over 400mg.

S

It cost me a bunch, but I found no benefit and when I saw that neurologist he said he had yet to find someone who was helped by it, so not to waste my money. I had given it a lengthy try and was finding it a bit much to gain nothing.

P

Hi Aletta – I tried CoQ10 for about 3 months a few years back but found it made no difference so I stopped taking it.However, I know there was other members of BCAS who took it – one had said he didn’t know if it was helping but then he went off it for a couple of months and really noticed his energy levels, etc. going down. So, it’s hard to say if his body was becoming dependent on it or if it really was helping.

S

I took COQ10 for about 6 mths after being Dx with non-hereditary O.P.C.A.
Oct /2004. I didn’t notice any difference, or improvement.

K

D has been taking Coenzyme Q10 for the last few
months. He currently takes 800 mg/day, which is less than the 1200
mg/day some studies have reported as beneficial. We’re hoping,
actually, to titrate him up to 1200 mg/day—just haven’t gotten a
chance to do that yet.

D does feel that the CoQ10 gives him more energy—helps with that
devastating sense of fatigue he often feels. And, he does seem to
have gained more energy as we have increased the dosage for him.
It’s impossible to be certain, though, because we have made lots of
other medicine changes at the same time. And there certainly hasn’t
been a “night and day” effect so dramatic that we can be certain it’s
having a positive effect.

D

My husband was put on 300 mg. CoQ10 by one of the neurologists who saw him early on in his disease process. He was also put on 300 mg. of Alpha Lipoic Acid by this same neurologist at the University of Virginia Neurology Research Center. I honestly can’t say that either helped him any, although I guess it’s possible they did. The Chairman of Neurology at the University of Virginia Medical Center was my husband’s neurologist during the last three years of his life and told us he thought it wasn’t helping and was just costing a lot of money. I eventually stopped giving it to my husband when he had to have his feeding tube put in because it tended to clog up his tube.

J

My mother in law lives with me and she has been diag. with PSP for two years. Prior to that she was diag. with atypical PD. She read that CoQ10 would help. She purchased it every month for the first year of the PSP diag. It didn’t seem to help. Her doctor actually told her to stop taking it. Now she only takes OTC calcium.

M

My Husband was told he has P.S.P. In Aug. of 2006 at the Mayo Clinic, He was told to take 800 mg. Of COQ10 daily, it has been a blessing to us, at that time my husband age 65 couldn’t answer the phone, sometimes it was upside down, sometimes he just couldn’t remember who called, etc. Well to make a long story short, he can now answer the phone as well as he always did , yes he is slowing down a little in his movements, but it is wonderful to have clear thinking again, I hope this will be of some kind of help to you.

D

We’ve taken 1200mg of Q10 daily for a couple years, after reading of a trial that showed 1200mg was effective but no lesser dose. Best price we found was Puritan Pride brand, and best dose the big 400mg capsule, which is hard to get down with psp swallow problems. So we bite off the end of the capsule and squeeze the orange paste on a spoonful of food. A doctor said it should not lose effectiveness this way (some supplements are best left in the capsule so they digest in intestine and are not compromised by stomach acid). Q10 is tasteless and goes down easily this way.

Recently we heard 2400mg is a more beneficial dose, so we’ve doubled intake, 1200mg morn and 1200mg eve. Can we say it works? No medicine works with psp. So it’s enough if it stalls progression of the illness, buys time until a cure is found. I think CurePSP has given a grant to run a clinical trial on Q10. For us, a few trials already published are enough reason to take it—we don’t have time to wait for more proof. The big question with any supplement is whether it passes through the blood/brain barrier, actually gets from the mouth to neurons. Something else we’re looking at is the enzyme glutamate dehydrogenase. An inherited deficiency was found in some patients with OPCA.

The suggestion is that “Testing for the enzyme should be done in new cases of parkinsonism, particularly in those with atypical features.” (That’s us.) So far we’ve not been able to find anyone that will test for this enzyme. We’ve also been advised by an alternative m.d. to try this supplement cocktail: 400mg Mg chelate, 1000mg Vit. C, 300mg SK Alphalipoic acid, 400mg Vit E, 60-80mg gingko, and 500mg N-acetylcysteine twice a day on empty stomach. We’re slowly declining since 2004 diagnosis, but still eating, walking with assistance and talking. Trucking on.

E

The information on CoQ10 was one of those things I read through, but didn’t really understand. I ‘ve been so tied up with a Health Ins. Problem, but hopefully it’s been cleared up. At that time, I read it, but didn’t respond because I was so tied up with the Insurance. I didn’t save that info when it came through, but it sounded like a temporary fix for the brain cells affected. Not only has my husband been diagnosed with PSP, but we also have a 53 yr old son with CP. I wondered at the time if it would help someone like him…..

You have my permission to use my Initials or anything you want….You do so much for all of us!

C

My husband was diagnosed with MSA over a year ago. Doctors think he’s had this disease for 5-8 years. At one of the visits with his PCP who is also a holistic doc we chatted about the CoQ10. The doc put him on 125mg a day. He’d been on it almost a year when I first read about the clinical trial in Boston. We went to Boston and the first time he was turned down for the study because he was already on it. They later reconsidered him if he would stop taking the 125mg a day for at least two months.

Well, it’s now week 6 of the clinical study and I believe my husband is on the placebo. I’ve seen a big change in dementia. His dizzy spells seem more intense and don’t pass as quickly. I could be wrong as I know it takes 2-3 months for supplements to really be at 100% but this is just my impression of the progression. It could be just the normal progression (if there is one) of this disease. One thing I’ve noticed at this stage of the disease is that one symptom will ramp up and another will subside and vice versa.

Just my observation…

Take care.

B

K tried CoQ10 soon after dx in 2003. He felt that
there was no difference and has not tried it since.

L

My husband, David, who has MSA-Type C was on 1,200 mg of CoQ10 for several months last year by his doctor at Johns Hopkins. Not only was this very expensive but when he returned for his evaluation, the doctor stated that he did not really anticipate that there would be any significant benefit anyway. This seemed to be only something else to try enabling David to have some hope that his symptoms might improve. Another lesson learned !!

S

Yep, I’m a CoQ10 user (with FA). I began using it about 2 years ago cuz people were saying, “C’mon, it’s good stuff…try it!” Without researching, I tried 30mgs per day, didn’t notice anything, so quit when the pills were done.

Then someone told me, “30mgs is nothing! Take more!” So I bought 60 mg pills, and took 2 with vitamin E. The change was tiny, but noticeable. I was able to speak full sentences without needing to stop for another breath, but it wasn’t in a huge way.

So I ended up stopping for money’s sake, and my speech felt worse after 6 days without CoQ10. When family would ask me questions and lure me into conversations, I’d get impatient with myself. I’d have to repeat myself after almost every sentence.

I went back on CoQ10, and improved after 7 or 8 days. Then I found out that it assists in giving strength to the heart muscle, and it made sense.
Maybe it’s a placebo for me, but I do find an improvement, so I’ll stay on it. I’ve never met anyone else who can agree that it makes a difference, but try it if speech is exhausting to you at times.

And don’t buy from London Drugs or SaveOn, or other waste-of-money pharmacies. Costco sells a bottle of 100 gel caps, 150 mg. I take 1 pill a day, so I pay $26 for 3 months. I don’t feel it’s too expensive anymore.

G

My wife is on CoQ10 – 1200 mgs a day (600 am, 600 pm) which is the same protocol as the current study. With the study u had 50% chance of getting the placebo. With your drs. approval is on the dosage above. It is difficult to determine what effects it is having if any. No way for us to isolate it given other meds and things things she is doing (acupuncture, daily exercise, etc.).

B

The diarrhoea is a reaction to an improvement in heart function [i.e., circulation] and is usually suffered by people with advanced FA and ‘Carbohydrate Intolerance’ [which a DB2 diet should help]. But CoQ10 improves the energy and should be included in the list of things [like tea] not to be consumed in the evening. The improved circulation and antioxidant level also cause some small but kinda nice cosmetic side-effects […to which, I’m sure, Brine can attest ]

I buy my CoQ10 [300iu/day] and Vit. E [800iu/day] in bulk at the Costco Pharmacy in Richmond for 1/3 the retail price.

R