Cortical Basal Degeneration Can anyone help me, Im looking for recent information,developments and support with regards to CBD.

[Pippin123]

Hello all. I am new to the forum and don't really know where to start In 2010 I was diagnosed with Parkinsons disease and although it was a shock and meant I had to take early retirement from my job as a nursery officer, I decided that I was going to face it head on and enjoy every day as much as possible. As the disease has progressed new symptoms appeared only on the right hand side and I wasn't responding to Parkinsons drugs. After a second opinion by a specialist Parkinsons neurologist - . I was diagnosed with CBD in November. I am now awaiting the result of a DAT scan to help confirm this. However I understand that the definite diagnosis can only be made postmortem. I had never even heard of the disease but have done some internet searching and feel scared about what I read.. I have lots of questions i would like to ask - like why do I need to keep on all medications if they are not helping? maybe there is someone out there who can help.

[SharonAB]

Dear Pippin123, Good evening,

The use of medications is certainly an issue with all concerned. From what I understand opinions and studies vary considerably on what can be tried, and what is of value and to whom and for how long. I think it is a case of put 10 people in a room with same diagnosed neurological conditions and all would be 'doing' something different with medication. I gather it unfortunately a trial and error of what is best.

As diagnosis is clinical, I don't think there is even a consensus between the medical profession yet of what should or should be taken and tried - some say none, others offer a full plate to select.

So that is where forums like this can be of value to you.

From what I can work out - my husband (whom I is no longer living with me) is taking are basically mammoth doses of old style and new style Parkinsons medication and many times over what someone with Parkinson's could tolerate ?? and/or what pharmaceutical companies would agree to being administered. There's some old postings of mine you may(?) wish to look it.

However be aware, I am pretty biaised as I myself am 'very much anti medication' as I've had to wittness some graphic side effects that are stuck in the memory bank forever. But then I am not the one with CBD or PSP or MRSA is having to deal with what is...

You mention a DAT scan - My husband hasn't had one of those. He's had MRI's initially and then PET scans - I never got to see results. Presume they each have there own levels of efficiency. Curious wonder - why one type is done over another.

Regards,

Alana - Western Australia

[wifemo in reply to SharonAB]

Hi Alana -

Tony had a DAT scan at Addenbrooke's after the change of diagnosis to PSP - I never did discover what was the difference but it seemed to confirm what was suspected.

My memory is that it took about 45 minutes and Tony just dozed off - probably helped as it meant he kept still!

Keep strong for Chloe ...

Mo

[Hidden in reply to wifemo]

Hi wifemo

As far as I know a DAT scan cannot diagnose Parkinson's but can help confirm the clinical diagnosis. Also the scan cannot distinguish Parkisnon's from PSP or MSA. It does help rule out other diseases that may show some similar symptoms in the early stages of these diseases. The DAT scan will help show up the possibility of Parkinsonism in a patient (it's all related to the lack of dopamine and a particular area of the brain- nigro-striatal - where dompinergic neurons have been damaged or died resulting in problems with movement).

I guess the Addenbrooke doctors feel the scan has eliminated those other diseases. However, I suggest they have had to use clinical signs to diagnose PSP.

Cheers

T.

[wifemo in reply to Hidden]

Thanks, Strelley -

You really must enjoy the research! Addenbrooke's have a dedicated Centre for Brain Repair, and Dr James Rowe is the "local" PSP specialist, although Dr Roger Barker took part in the clinics at King's Lynn hospital. At the time, we did feel relatively well looked after - some people's experiences recounted on this site sound horrendous.

We actually went along more to help their research and see another patient rather than with any hope for miracle answers.

Mo

[jimandsharynp in reply to Hidden]

Strelly. I think MRI is used to rule out strokes and tumors in the brain. At least that's what I was told.

Jimbo

[Hidden in reply to jimandsharynp]

Hi Jimbo

The neurologists are using many scanning techniques to help differentiate idiopathic Parkinson's from all the other atypical Parkinson's and non degenerative type Parkinson's (like vascular PD). They are always researching ways to distinguish PSP from CBD from MSA from FTD etc etc.

As I mentioned in my post, they are not quite there yet, even with the latest DAT scan (a Nuclear Medicine type imaging procedure).

Other research is continuing with specific "scanning" radioactive labelled compounds like "tau". These are mainly for Alzheimer's, but will be useful in PSP/CBD.

These general imaging techniques usually involve radiological MRI along with Nuclear Medicine PET/CT and SPECT (like the DAT one) scans.

The MRI scan is used to rule out strokes and tumours as you mention (and other types of Parkinson's like vascular PD), but neurologists have found that midbrain atrophy (Hummingbird sign) is a good marker for PSP in over 90% cases, especially since it is not usually seen in classical Parkinson's or most other atypical Parkinson's.

All the best from Downunder!

T.

[CheekyChops1973 in reply to wifemo]

Hi Mo,

I have been diagnosed with cbd and just to let you know I also fell asleep during the datscan and I was given this procedure to confirm a Parkinson plus syndrome . I've been told its either MSA PSP or CBD . My first letter to my gp from my consultant said It could well turn out to be cbd because of my atypical features and my positive datscan. Further correspondence says that I am not going to respond to levodopa very well because of the likelihood I have a Parkinson plus syndrome . I'm confused about what to expect and don't really know if the the levodopa is working that well as I'm having quite constant cramping or spasms running down my calve muscle into my ankle which makes my ankle feel as though it wants to twist inwards . Quite painful too !!! . I also have tremors in right hand and foot and ankle clonus and my right hand is becoming harder and harder to use for shaving and washing and writing etc. I'm wondering if this is your husband you are referring to and wondered what meds he takes etc . Would be interested to hear about his road to diagnosis etc . Thanks for reading this and all the best to you both .

[wifemo in reply to CheekyChops1973]

Hello Cheekychops -

Tony actually passed on in December 2012 but like many others I stay with this site - even though I didn't find it until too late.

We did have one unfortunate incident with levodopa. After breaking his hip, he was discharged from the main hospital to the local community hosp. for rehab. Some idiot prescribed Madopar, with a note "has had an adverse reaction in the past". No warning to monitor, and I wasn't aware until a week later, by which time he was being aggressive, climbing out of bed and falling, so the hosp. had to trial a special bed which lowered to the ground (subsequently the Friends bought it for the hosp. so that was a "good" outcome.)

As soon as I realised what was happening I asked for Tony to be taken off the med. immediately, and within a couple of days he started to come back down off planet zog.

When I challenged the Consultant, he seemed to think it was a reasonable suggestion to prescribe - talk about stick together ... It seems that once the original incident (broken hip) was fixed the "problem" was then passed on to the next person in the chain.

So, really, the only med. was Baclofen (plus Pramipexole and Trihexychloride for a time, but they didn't seem to make much difference).

Interestingly, Tony had a slight controllable tremor in his hands when we first met over 50 years ago (he was a draughtsman and could draw freehand a straighter line than I can), which was put down to being in the Blitz in London, but that tremor seemed to disappear once PSP took over.

Unfortunately he didn't want his brain to be donated for research, so we will never know the finer details.

The first neuro diagnosis of "probably Parkinson's" was made after a tremor developed in first one then both arms, following a bang on the head, but "they" always pooh-poohed cause and effect. Perhaps the PSP was sitting there waiting for such a trauma? We hadn't been too surprised when the tremor first started, as Tony smashed the elbow of that arm several years before, and his hobby was ceramics. Working clay can be quite tough.

Hope this helps, but I'll be happy to answer any other queries.

Mo

[jimandsharynp in reply to SharonAB]

Alana, I'm with you on meds. I've heard that long term use of Sinamet, a Parkinson's drug, can cause dysconisia (irregular body movements). For that reason we stopped it. It didn't appear to be helping anyway.

Jombo

[flicka]

PSP Association based in Towcester will help you, and guide you to other help. Good luck

Flicka

[shasha]

hello i too was dxd with PD in jan 2010 but none of the drugs helped at all - so i asked my neuro to take me off them - he got me into hospital and i just stoppped them all with no bad effects at all - i was then tested with injections of dopermine which should have made me walk better , it didnt so it was then discussed that i have PSP - i am currently on modopar twice a day and have just started on amantadine which seems to be helping a little - any more quieries then just message me shasha xx

[maryelezibeth]

Hi Pippin123 My husband was diagnosed with cbd he took all the tablets did everything his doctor said it made no difference live every day the best you can he had all the scans it does not change anything enjoy your days

[Thekelly5]

Hi pipin

Really sorry to hear of your diognosis,

my dad was diagnosed with PSP, I do know the Parkinson drug did help him, when he stopped taking it, it did seem to be worse for him

Sorry

Anthony

[jimandsharynp]

I'll try to give you some answers as best I know them. First, you can keep up to everything going on related to CBD on the entire internet. If you email me next week I'll send you instructions on how to set that up on your computer. It's NOT hard. There is a book by Janet Edmonson that is good to read. Her husband was diagnosed with PSP but the biopsy at death determined it was CBD. I tell you this because these diseases are very similar. Have you had a diagnosis by a top notch neurologist? We went to the top neurologist at the State University as they are good. Mayo Clinic is also good if in the USA. If your diagnosis was PSP, CBD, or MSA (all brain diseases) the symptoms are similar and outcome not good. None have treatments or meds to stop or even slow the virus continuing to destroy brain cells. Wish I had better news. The best you can do is treat the results of the damage as they occur. You will find also that the progression of the illness is different in most patients. Even when each symptom will happen an their order varies by patient. If medications aren't working be aware that some meds like Carbadopa/Levadopa can have very adverse effects if used a long time. Lots of therapies like coconut oil etc have been tried but no established solution yet. Try everything you think might work. You have nothing to lose.

My advice is to not worry about what is ahead. I find this non-productive and a waste of time and not emotionally good. Live each day as a gift. Oh and don't worry about "stages" these vary for every patient. Also in an early stage you could aspirate, get pneumonia, and die thus never reaching stages 2,3, or 4. Become a student of the disease but don't get hung up on what is ahead. Enjoy everything you can now, don't wait. As with most PSP, CBD, and MSA patients your ability to do things will slowly deteriorate over time. Keep in mind, there are NO guarantees in life, even for those without PSP and CBD. I hope I did not discourage you with this posting. If I am in error I'm sure another member will correct me. Keep your head up and outlook bright. My email [e-mail]

Jimbo

[EB2000]

Hi Pippin,

I can appreciate that you must be feeling really concerned about CBD. If you think you may find it helpful to speak to somebody, you may wish contact the Helpline at the PSP Association. They can provide a listening ear and emotional support, as well as information and advice.

You can contact them on Tel: [phone], or email [e-mail]

Very best wishes

EB

.

[erinkeo]

Hi Pippin

My mum has been diagnosed with CBD, she has tried one drug so far but found it made no difference so the doc isn't pushing her to take anything and she's happier not to. I try to research as much as possible on her behalf as she is not able. As Christine47 mentioned I'd advise joining the yahoo group for CBD if not just for the documentation that has been posted by one of the members who has been able to manage their CBD with a regime of natural drugs - obviously just because it works for her, doesn't mean it can work for everyone but there is no harm trying. I only pop in and out of here when I have time but do feel free to carry on asking anything and I'll help find an answer if I can!

Best,

Erin

[Pippin123]

Thank you all for your replies I am sorry i have taken so long. You have all given great advice and offered valuable information and support/, it iIs good to hear from people who know what I'm talking about/ I have now read the book Finding meaning with Charles I found it very emotional and my husband and daughter read it too ..A great insight to the caregiver challenges in a very positive way ...... I am going to come off at least some of the medication when I next see my neurologist (should be this month) I wont hold my breath. , as I am sure I feel worse after taking it. I will also look at the yahoo site. Thanks again x Pat