CBD??

[Healthygramma3]

I have noticed that there are not many posts about CBD. My husband has just recently in the last 3 months been diagnosed with CBD, but of course it has been going on longer.

Has anyone tried healing aggressively with diet, supplements and chiropractic that involves the C1 and C2 vertebral adjustments?

Is this the same "journey" as PSP?

His worse symptom right now is that his right shoulder is in pain almost all the time. He has fallen several times due to his balance and coordination issues and we are thinking it is from the falls.

Is it possibly from the CBD?

[Buckeye7]

Peg,my, mother in law has cbgd. First diagnosed Cerebellar Ataxia, MSA then PSP and finally CBGD, which I feel is correct diagnosis. The Dr. didn't give her any treatment. Suggested therapy, which he didn't think would help. Put her on a Parkinson medicine and said was basically to eliminate the possiblility of misdiagnosis. Sinimet would not help any of her symptoms if it was CBGD and it hasn't helped. She is in a rapid decline the last 6 weeks, but is better than some patients that are on this forum. Peg has very little pain. I think the pattpatt of the brain thatprocesses pain has been affected . When she broke the ball joint on the femur that connects to the hip, she kept kicking her leg up in the air, rubbing it and twisting and turning it, 'trying to make it work' as she put it. Dr. couldn't believe she wasn't in excruciating pain. Once dhe found the word for it, she said it felt like she had a cramp in her leg. There is s site, I will try to find and post it on here that wsd very informative. Several families posted timelines that gave me s good idea where Peg lies in this nightmarish journey.

[jimandsharynp in reply to Buckeye7]

Buckeye, Sinimet also will not work for PSP patients. If it does work it doesn't work well and only for a very, very short time. Not sure if it works for MSA. Jimbo

[laineyash in reply to Buckeye7]

My Husband has been put on Sinimet, again, to see if it helps, if it doesn't then his diagnosis is CBD, we have only just found out although he has been going down hill for about 2 years now looking back, it would be so helpful to me if I could find out where he lies at the moment x

[raincitygirl in reply to laineyash]

Hi Laineyash: Try the CurePSP website and/or the PSPA website and search for "4 stages of CBD" . I'm sure it was one of those two sites I saw a medical description of the stages of CBD.

Anne G.

[laineyash in reply to raincitygirl]

Thank you Anne, will have a look xx

[Hidden]

My dad has CBD and diagnosis took a long time but does seem to be correct from what we can tell. No real treatment or therapy has been suggested and it's more about managing the various symptoms. Difficult to tell but symptoms for him started maybe 6 years ago. Buckeye7 - if you do have info on another site, that sounds very helpful, thanks. He has a very marked weakness down one side and is not really able to walk at all now. Healthygramma3 - Dad doesn't seem to be in pain so I've not come across that kind of pain being a symptom of CBD but certainly weakness and coordination issues are. Dad (particularly in evenings when he's tired) has great difficulty working out where a cup is on a table or food is on a plate for example. We haven't tried the aggressive diet/supplement approach. He now really needs fairly soft food (and further complicated by a late onset gluten intolerance - argh) so that would make it more difficult. A balanced healthy diet seems to be ok for him just now. Best wishes to you and your husband. Plum.

[Healthygramma3 in reply to Hidden]

Wow!! I have to tell you that my husband was immediately taken off of ALL grains. I was leary at first, but it was explained to me that much of these disorders seem to have a similar brain cell dysfunction of glucose metabolism. He recently had a little gluten and immediately broke out on his face. We are being very aggressive with the low glucose, high "good" fat treatment and his symptoms seem to be holding the same. We will see.

I do notice that he is MUCH worse in his balance and coordination at night when he is tired. interesting....

He is on 6-8T of coconut oil per day!!! All organic and grass fed meats and all green vegetables... low glycemic index foods : ))

[Hidden in reply to Healthygramma3]

I'm really glad I mentioned that! The gluten problems started and were diagnosed a couple of years before the CBD symptoms. It's not coeliac/tummy problems with him but the rarer skin condition that you mentioned - very itchy skin that would break out not just on his face but back and arms and legs. When it was eventually diagnosed and he stopped taking gluten, his skin cleared up, with some help at first from medication I've now forgotten the name of. Frustrating to have to consider the diet so carefully on top of everything else. I've never heard of the two being linked I don't think - I just thought poor dad was suffering with yet another rare condition. And yes, things are MUCH worse when dad is tired and it gets to the evning.

[Healthygramma3 in reply to Hidden]

Thank you!! The more I read about food, the angrier I get at the food industry. My husband is also a Vietnam vet who was exposed to agent orange...not to mention all the mercury in the mandatory vaccines that were required every time he went ona "patrol" over seas (US Navy

[jimandsharynp in reply to Healthygramma3]

When my first wife died from CJD the top neurologists at the university hospital said "Don't try to figure the cause out because the incubation of the disease can be years before symptoms show up. We can have theories of the causes but when the professionals can't figure out the cause or causes (could be more than one) we certainly can't figure it out either. You can spend many hours attempting to figure it out but IF you did it wouldn't change anything would it? Jimbo

[jimandsharynp in reply to Healthygramma3]

Fatigue is a major part of these diseases that isn't talked about much. Probably because it isn't considered a "bad" symptom. Seems logical that at night fatigue would be setting in and cause issues. That's true for my wife who has PSP. Jimbo

[jimandsharynp in reply to Hidden]

Plum90, Yes, as I understand it one of the "markers" for CBD that isn't as prominent in PSP or MSA is an affect on one side of the body more than the other. Jimbo

[Buckeye7 in reply to Hidden]

tornadodesign.com/cbgd this is the site, I referred to that is extremely helpful to me. Several caregivers documentation of their journey with cbgd. It may encourage some to keep a log that may later be shared to help others.

[shasha]

I TOO HAD SEVERE PAIN IN MY SHOULDER - PUT IT DOWN TO FALLING DOWN THE STAIRS BACKWARDS BUT I NOW KNOW IT WAS THE STARTING OF PSP - I AM SO SORRY THAT YOU AND YOU HUSBAND ARE HAVING TO SUFFER THIS HIDEOUS DISEASE - I TAKE A WHOLE LOAD OF SUPPLEMENTS INCLUDING COD LIVER OIL - TURMERIC AND ACIDOPHILUS AMONGST OTHER THINGS I DONT KNOW IF THEY DO ANY GOOD BUT IF YOU SEARCH THIS SITE FOR INFORMATION ON SUPPLEMENTS THEN YOU CAN MAKE UP YOUR OWN MIND

[Healthygramma3 in reply to shasha]

I have my husband on D3, probiotics, coq10, glutathione,l-thanine, melatonin, vitaC,choline, milk thistle,and the list goes on. The more I read, the more I am convinced it helps! I will learn how to search this site.

[shasha in reply to Healthygramma3]

good for you healthygrammar !

[laineyash in reply to shasha]

Thank you Shasha, hubby fell backwards off the stairs last Sunday (his 1st fall backwards, he has had numerous falls but always on the front) he has really hurt is back but wouldn't go to A&E, I rang our OT to ask if there was any equipment I could have to help get him off the floor as I have degenerative disc disease and I'm in constant pain and can't lift him (he's about 14 stone) she spoke with her boss and they suggested a help line (to response team), I contact our local Council to be told that they would only send 1 person (it would take 2 people to get him up) or they would alert the emergency services, well I could do that myself and save a shed load of money, can't seem to get much help at all

Lainey

[quickgel]

Hello Healthygramma3, My wife was first diagnosed with CBD and subsequently with PSP. At the outset we tried all sorts of alternative therapies since nothing was forthcoming from the formal medical route. Margaret consumed, with good humour, some terrible tasting herbal concoctions provided by well meaning family members. I wouldn't discourage trying anything that can't harm and may possibly help. I would suggest the greatest benefit derived from the display of care and the hope that something might help, however we learnt to be prepared for disappointment. From everything I've read on this site the 'journey' with CBD and PSP are 'similar' but I agree with the contributors who advise against spending too much time and energy trying to understand the differences but to concentrate on easing each symptom as it appears.

If you do a search for 'Strelly CBD' on this site you will get information on the medical differences between the two diseases, as well as much other clear and useful information.

One aspect of the disease which doesn't receive much discussion is the fear/anxiety that must be felt as the progressive changes to the body take place. I'm sure there must be some safe medication available that could help relieve these feelings, in addition to the comfort offered by a loved one.

My very best wishes to you both in coping with this difficult and wretched disease, Jerry.

[Healthygramma3]

Thank you

[jimandsharynp]

From my research PSP, CBD, and MSA have many of the same symptoms. One thing that sets PSP apart is the eye movement/control. CBD is unique in that, for the most part, it affects one side of the body more than the other. Each of these diseases have their own specific things that help medical professionals tell which is which. Having said that, in the book "Finding Meaning With Charles" by Jannet Edmunson (spelling) her husband was diagnosed with one disease (PSP or CBD) but on autopsy at death it was the other of the two and opposite his diagnosis. Due to similarities only an autopsy at death can prove, beyond doubt, which disease it was. Is CBD the same journey as PSP? In major part "yes". That is why CurePSP is for PSP, CBD, and MSA patients. Balance issues and falls are part of all three diseases. Falls and aspiration pneumonia are the two leading causes of death in these diseases. Early signs of these diseases can be balance issues and frequent unexplained falls. Find the best neurologist you can. Believe it or not many in the medical profession don't know much about these diseases due to the rareness of them. The book mentioned about is excellent because she relates what they went through, what worked for them, what they tried that didn't work, etc. Best wishes. Jimbo

[jimandsharynp]

My motto is to try anything you think might help. However, keeping it real, this disease is not a one-size-fits-all. What works, or appears to work, for one may, or may not for another. I'm reminded that in our support group we have two people who were involved in a study for a PSP drug. One got a placebo and the other got the real drug. The man who got the real drug said he thought it helped him a bit. However, he must have been the exception because the drug was thought to be ineffective over the entire group. Just an example of the complexity of these brain diseases from patient to patient. Jimbo

[nastynorm]

My sisters huusband died last sunday of CBD. in a wheel chair last 3 months. She took care of him to the end. Strange my wife is in stage three of PSP. Just about ready for a full time wheel chair. can not walk at all. Many falls last month. Looks like someone beat her up. Never complains just wants me to keep her to the end God willing. Good luck to you and your mother in law.

[Buckeye7]

Healthygramma3, The CBGD site that I have found very helpful is .................tornadodesign.com/cbgd let me know what you think you think his site

[Healthygramma3 in reply to Buckeye7]

Thank you and so true! Very few medical and caregivers understand the disease much less take the time to learn about this disease. A family faced with this journey is very much alone.

[Riven]

There is another CBD group on yahoo that has over 1700 members.