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Topic Focusing in and neck problems Go to previous topic Go to next topic Go to higher level

By Roberta On 2009.09.18 22:34
Hi,
My husand has been diagnosed for almost 3 years. He has tried Mirapex and Azilect which when I look back now made his symptoms worse. He is not taking anything now and is actually better.

His movements are not that bad but his cognitive skills and focusing in on things are the problem. His neurologist said that all the drugs for PD are for movement and that isn't really his main problem even though he has been diagnosed with PD. He has always exercised alot and I think that is why his movements are not that bad. He has one other problem that is getting worse, his neck. He cannot hold it up and it is starting to hang lower and lower.

This is a 61 year old man that used to have beautiful posture. Has anyone gone to a Naturalpath and had any luck? Or does anyone know of any herbs or anything more natural that he could try for both his neck and focusing?

Thanks for any suggestions. The drugs just don't work for him at this time.

By annwood On 2009.09.18 22:51
Sorry you are going through this. It is only natural to want to find something that will make all of this ok.

Personally, I am opposed to alternative medications/treatments and to the best of my knowledge there is nothing that will improve your husband's cognitive or neck problems - they are just part of this terrible disease. You will find many people that will tell you otherwise and be willing to accept your money for alternative treatments. They will tell you that there is a conspiracy in medicine to keep their "secrets" away from the mainstream. The best thing you can do is read everything you can about PD and understand that it is a progressive neurological disease with no known cure. Hard to take especially when it is a loved one, I know.

As the muscles become more affected there is generally a dramatic change in posture - drooping head, hunched shoulders, etc. The cognitive problems are apparent in about 40% of PD patients and will progress over time.

I wish that I had better news for you. Stay with us. Prayers!

By susger8 On 2009.09.19 10:40
It sounds as if your husband has not been prescribed any medications for mental status -- like Aricept or Namenda? They don't help everyone, but it might be worth a try.

I agree with Annwood about alternative supplements. However, exercise and massage are often helpful. The stooping over is difficult to counteract. I think a lot of PWP have muscle contractures that lead to stooping. It's part of the disease, unfortunately.

Sue

By lurkingforacure On 2009.09.19 14:06
I'll play the devil's advocate here and share what we are doing. I have to say, though, that we don't have the cognitive issues you mention, but I have read some studies indicating there may be something beneficial to some of the things we are trying.

We met with a nutritional oncologist (or is it the other way around?) a few weeks ago. It was a 3 hour meeting and I am still trying to get my head around the wealth of information shared. This guy is NOT a naturopath or homeopath, although he probably could easily qualify, his practice is with several oncologist specialists, so he is not a flake. He has counseled several members of our various olympics teams in addition to cancer patients, and I was surprised to hear him say that PD patients currently comprise abuot a third of his practice. Most of his PD patients are referred to him by their neuros, which I found interesting since I cannot imagine our neuro being that open-minded...but then maybe the attitude of these other neuros is "well, it can't hurt and it might just help".

The gist of everything that I have been able to process so far, for purposes of this thread, is that sometimes it matters HOW you take what you take. My husband has been taking the horribly expensive coQ10 that was the one used in the PD trial (the one where they found slowed progression) and I have been very disappointed in it. Turns out, we should be taking, according to this guy, a different formulation: ubiuquinol, instead of ubiquinone. The body takes ubiquinone and turns it into ubiquinol which it can then use....if you already have problems, the body cannot make the transformation as easily if at all, and you just don't get the benefit of the supplement. So you skip that step and take the end product directly, and it matters whether it is hydrosoluble, etc. I dont' sell this stuff or make any money mentioning it, but I know there may be some who want to know the brand we use so here it is (and we bought it from epic4health.com, again, no ties or profit interest): BioQSorb Active Q, we take the 200mg softgel several times a day.

Has it helped? We've just been on it a week, and were told we probably wouldn't notice anything for at least 12 weeks.

We also take Lecithin granules (1 tablespoon 2 times a day) made by Progressive Laboratories, Inc. I think you have to get these from a doctor's office and we did buy this from his office, it comes in a big 1 pound tub and each tablespoon also contains a whopping 1.8 g of phosphatidyl choline which is important in brain metabolism. There are a lot of articles chiming about how great lecithin is but I was surprised to read about the benefits of the phosphadityle choline as well. You can eat this stuff mixed in yogurt, oatmeal, you can make smoothies with it, cook with it, it is very easy to work it into the diet.

If you google the lecithin and/or phosphadityle choline, there are some studies about it having benefit in Alzheimer's dementia. Some are more positive than others, but here is my experience after one week (and trying to be as objective as possible and we all know how hard that is):

1. seems to sleep better at night although he is still very susceptible to waking at the slightest sound;

2. was actually able to go back to sleep the other night after I woke him up when I went to the bathroom, usually once he wakes up he cannot get back to sleep;

3. he has said he feels less "brain fog".

We also take ALA (be sure to eat with food), folic acid, multivitamin, a multimineral, and timed release l carnitine fumarate (again, the formulation is apparently important and we got this from the epic4health.com site as well). The new coQ10 and fumarate formulations are what is new to us and what we are hoping will help.

We are also now on a gluten-free diet although I doubt my husband has any allergy to gluten; we are awaiting the saliva test results to know for sure. Whether or not he has a gluten allergy, I really do like the idea of limiting how much wheat and processed gluten/grain products we eat. We were told the body will not be free of gluten effects for up to three years after you stop eating gluten (I can just see annwood rolling her eyes here, that's OK annwood, I still think you are great!)

I am hoping some of this helps with his muscle pain, at least.

One thing I liked about this man is that he is not wedded to the idea that PD is strictly a neurological disease. Rather, he thinks of it almost more as an autoimmune disorder adn so we got a very thorough discussion of the immune system and how it develops, functions, and misfunctions. A lot of extremely well-educated PDers I know (ie, chemists, engineers, researchers themselves) believe PD is the result of an immune system gone amok. This makes sense to me since everyone's PD is so different. If so, perhaps trying to balance things back into their normal state could help.

I totally see why people are leery of these alternative treatments, supplements, whatever you want to call them. There are so many snake-oil salesmen out there that you really do have to research, research, research and then research some more. And then talk with your doc and make sure he/she knows what you are doing on the side.

Hope this helps. I want to add that I don't think these things I've listed above will "cure" my husband, although I pray for that all the time. I think the best I am hoping for, honestly, is that maybe some or all of these things will help him feel better, so that even though the damn PD is progressing, he can still have a life.

One more thing: my layman's research indicates that stress seems to be pretty high on the list for speed of progression. PDers who are under a lot of stress seem to progress faster. And when I say "under a lot of stress", I mean, stressful to that person. What you or I may find stressful, they may not. Going to a party where I know no one is stressful to me, but terrifying to my husband, he hated that, even long before PD, and even more so now. Eliminating stress is stressful in and of itself, but I have found it does help my husband more than just about anything else I can do. I just wish I could do more.

By annwood On 2009.09.19 15:47
No, Luckingforce, I am not rolling my eyes. I agree that supplements may be helpful but to date there have been no conclusive studies to demonstrate that they are of help in PD. That said you have to start somewhere and if all you get is a placebo effect it still counts. I was an onclogy nurse for several years and I believe there may be some benefit to a diet there but again nothing has been demonstrated. My concern is the expense and I know that it is high for these supplements which haven't been proven to help. If you can afford them I say go ahead but if you can't don't sell the farm.

As I see it you are beating a dead horse. Those dopamine producing cells are dead and nothing is going to bring them back to life. All you can hope for is a slow down of progression for the remaining cells.

Thank you for mentioning the snake oil salesmen - they are lurking and just waiting to jump on desperate people. Two years ago my neighbor developed a brain tumor at age 52. It was the same one Kennedy had. I knew that nobody ever survived that type of tumor and he was also told that citing the 18 month life expectancy. He spent a year on a terrible diet with constant supplements. I don't think he had a good meal after his diagnosis. He also spet $100,000.00 going to Brazil for a faith healer and as he progressed he was told that he just didn't have enough faith. He actually died while in Arizona visiting another Faith healer. That was 14 months after his diagnosis.

The nutritionist do believe in what they are promoting and I think in time we may see some benefits. It has been proven that cancer is an autoimmune disease and perhaps PD as well but again you are approaching it after the horse is out of the barn. I think its benefits may well be in prevention rather than control or cure of a disease.

Just my biased opinion!

By LOHENGR1N On 2009.09.19 16:47
Ok lurkingforacure My friend, I'll join in as the devils advocate here also. Seeing as how You've brought up the subject of cq10 or coQ10. Most of Us remember the bold headlines and blaring announcements in the media claiming it slows down the progression of Parkinson's Disease! A small study of patients, not on any anti-Parkinson's medicine took the supplement and were reported to have shown signs of slow progression! This made Me sit up and take notice, because of the claim! We all know Parkinson's progresses at different rates in each individual as well as presenting different aspects of the disease in each individual. IE Parkinson's isn't a cookie cutter disease where We all exhibit the same symptoms and progress at the same rate. The report was released with the statement asking people not to take it on their own as more and larger studies would be needed and to partake in them one would have to have never taken cq10! However Human nature being what it is and with loved ones stricken there was a rush to the stores to purchase it. Desperate for anything to help combat Parkinson's and stay it's progression the Parkinson's community started shooting themselves in the foot per sae. With a somewhat promising product (btw, product being sold in vitamin stores wasn't what was being used in study but did taint any potential participants and exclude them from selection). I haven't heard of anymore studies or releases of findings from other studies, if there are could someone either post a link or email a link to me? ( lohengr1n@aol.com ). Also watch out for the mineral supplements if high in manganese.

Lurking, I'm not trying to dampen your enthusiasm, I really hope You've hit upon something to help Your Husband. Remember snake oil salesmen ARE out there and they come in all types and fields. They are very good at their profession. As Ann said the concern is cost of unproven supplements and reading your post the, it may take at least 12 weeks to start to notice anything, well that is worrisome as quite a bit can be spent in that time period. I do hope in 3 or 4 months you can post and tell me I'm full of it and it is working great for Your husband! I don't mind eating a piece of crow pie once in awhile! If I do get served it. would you please include a scoop of Ice Cream with it? Take care, best of luck and hang in there.

By lurkingforacure On 2009.09.19 16:54
Annwood,

I am not so sure about those dopamine cells being dead...I have read several places they are dead, but just as many other places say they are merely dormant. Just this week I read that they have discovered the insulin producing cells they have long thought to be dead in diabetes are, in fact, not dead at all, but rather, they are just lying there, inactive and for whatever reason, unable to function as they should.

This may be splitting hairs but I think the research focus (and my outlook!)is a lot different if we are dealing with dormant cells as opposed to ones that have already been lost. I don't think even the experts agree (those being the ones actually doing the research, not my neuro who reads maybe one article a year out of the professional journal du jour), but I like to hope that those little cells are merely dormant. Ignorance is bliss, as they say!

By annwood On 2009.09.19 19:18
I think that they are dead - no neucleus or other contents are in them. I don't blame you for forging ahead. It is such a terrible disease. I enjoy sparing with you - always have. Good luck.


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