My spouse was initially diagnosed as having Parkinson's Syndrome. In February a different Neurologist suspected that it might rather be CBD and this has just been confirmed.
I am currently the sole carer and hoping to find advice, etc from others on this site who are further along the line in order to be better prepared.
Hi Oumarusk,
This site is a great resource.. you can search for almost any topic and there will be many posts/replies about it. As far as being prepared.. if you spend time reading a lot on this forum, you will see there is a wide variety of paths patients take, which makes it very hard to anticipate next steps or even know where someone is on their journey. I know that is likely not what you want to hear, sorry for that. Out of curiosity, how was CBD "confirmed"? My mom is "likely" to have CBD... as far as I am aware, there isn't a test or scan which can confirm this.
We saw a Neurologist at the Neuro Sciences Department in Southampton Hospital. He did an in depth interview and physical examination, reviewed scans that had been done earlier etc. A lumbar punture is also being planned and we are waiting for the appointment date.
Could I ask what a lumbar puncture would show? we're seeing our GP Thursday so we could mention it, need to set up an OT too.
Hi Birdie04, i have no idea what a lumbar puncture shows, my mom didn't have one. From our experience, most tests are used to rule out stuff which actually CAN be definitively diagnosed. All that ever happened with any of my mom's scans, etc was a "normal" result. Meanwhile, anybody could easily see there was nothing "normal" going on.
Hi thank you for your response. Its funny you should say this. My husband had a CT a year ago, nothing showed up what so ever, a year on and things were slowly progressing, our GP referred him for another CT scan urgently this again showed nothing, I then insisted on an MRi as there was clearly something going on, but again nothing unusual or noticeable. I then asked for my husband to be referred to a neurologist, he was put on an urgent waiting list. In the meantime my husbands employer offered to pay for him to go private. The neurologist diagnosed CBD within minutes, what Drs didn't see he saw in seconds, it was on the CT scan too, which I found unbelievable as I thought the MRi was a more in depth one.Our GP has just referred him to an OT.
Best wishes
Hello Birdie
My husband had been to see a really nice GP for a back ailment but after the GP had noticed the way he was walking, decided to do a few further checks and said he suspected early onset of Parkinson's syndrome. He referred my husband to a Neurologist.
When the NHS letter arrived it was for in approximately 56 weeks with no specific date available.
We then decided that he couldn't wait that long and initially paid ourselves to go private. That Neurologist never suggested CBD after seeing him several times, and just increasing Levadopa medication until it started causing confusion. He had also arranged the CT and MRI scans, with nothing besides normal aging signs showing up.
After about 72 weeks he got an appointment via the NHS. It was then that the Neurologist said he suspected CBD.
Main reasons were no shaking, medication having not slowed the progression, the worsening stiffness and falls.
No one has recommended a DAT scan or having other scans done again. We'll be seeing the Neurologist again early next month and perhaps I should raise the question.
Most of the GP's don't seem to have a clue about CBD.
I'll need to follow-up on whether my husband's diagnosis is recorded as Palliative and been put on the Golden Standard Framework. He has had a few visits by an OT and Physio Therapists. These were initiated by the Neurologist, not a GP.
There have been a lot of problems at our GP practice resulting in doctors either being locums or just leaving, which means each time a visit needs an explanation.
Sorry, I have rambled on a bit, but it all adds to the difficulty of dealing with the whole situation.
Hi funny you should say what you've said, we spoke to a GP yesterday regarding my husbands OT, he really had no clue, he advised that as my husband is getting around pretty well at the moment that he didn't need one, I insisted that surely it would be a good idea to get him assessed within the home so at least we have something to gauge against as things progress. The Dr did agree and we are now waiting for an OT. Seems like they really have no idea what they're up against when it comes to CBD, its a case of being persistent to try and get some answers.Rambling is good for the soul, it has to be done at times, feel free to ramble anytime, I tend to do it too 🙏
My dad was diagnosed with Parkinsons, Dec 2019 ... it was only once his consultant neurologist had completed a DAT scan was his CBD diagnosis given.
Make sure you open the lines of communication to the GP and that accurate diagnosis are on health records etc. It was only at the beginning of 2024 that we realised Dads palliative diagnosis was on his health records and he was placed on the Gold Standard Framework - this unlocked a lot more support.
This forum is incredible ... lots of great advice and wisdom.
Hi, my husband too was diagnosed with CBD on 23rd December 2024, he's 60. I'm trying to come to terms with whats been said, and trying to stay strong. I joined this group for the same reasons. Thinking of you sending strength 🙏♥️
Hi, unfortunately it's a very difficult diagnosis to absorb. As my husband said, it wasn't what he had hoped to hear from the Neurologist.
I've tried not to overthink the situation and rather deal with each stage as it happens.
The thought of eventually having to pay at least £1,500 per week for care is very worrying. It will drain resources very quickly. We don't own a property here, as originally from South Africa, living here since early 2017 in a small cottage on the same property as our son and family.
Take care of yourself as you need to be strong for your husband.💕
Hello.. Still waiting for a diagnoses after 2.5 yrs of appointments , scans and physical, mental assessments.. He had another MRI recently to try and compare and look for changes. Thats his 3rd, plus CT scans x 2. He's trying Lions Mane suppliment, which some people find helpful. Its a horrid disease.. its robbing him of being a father and grandfather.. we are so sad about it all. x
Yes I totally understand how you are feeling all in all it took just over 2 years for my husband to be diagnosed. What are the benefits of lions mane? I will look into this 🙏♥️🙏 we as a family are devastated, such an awful disease take care x
Hello.. Just found this information on Lions Mane, hope you find it interesting :
Lion’s Mane is the most clinically studied of all the mushroom types which has driven its huge popularity throughout the West in recent years.
Research has shown Lion’s Mane to increase Nerve Growth Factor (NGF), which is responsible for the maintenance and growth of neurons in the brain. Many neurological diseases such as Dementia, Parkinson’s and Huntington’s disease are linked to the degeneration of neurons over time, and it is thought that neurotrophic factors such as NGF may play a role in preventing these conditions. Research has indicated that Lion’s Mane can repair, regenerate and protect nerve cells.
Many people claim Lion’s Mane improves their focus and concentration, similar to a strong coffee but without the stimulating and jittery effects. It can also promote improvements in mood and general wellbeing, as well as feeling more in the present moment.
“Lion’s Mane may be our first smart mushroom. It is a safe, edible fungus that appears to confer cognitive benefits on our aging population.” — Paul Stamets, Mycologist
References:
ncbi.nlm.nih.gov/pmc/articl...
pubmed.ncbi.nlm.nih.gov/261...
pubmed.ncbi.nlm.nih.gov/208...
pubmed.ncbi.nlm.nih.gov/242...
Thankyou for all this information. I have purchased some, am going to speak to GP/PHARMACIST before giving it to my husband as he is on other meds.Thankyou again for your reply 🙏♥️🙏
I found this interaction information:
info webmd.com/vitamins/ai/ingre...
Im speaking to our GP Monday, as Adam is on anti depressants and it says it could have a side effect. Fingers crossed he can go ahead and take it, as we're willing to try anything.Thankyou for the info 🙏
Hi thank you so much for this. We do want to deal with each stage as it happens. Thinking of you ❤
Replying about the lumbar puncture.
In research, lumbar punctures may also be used to understand rare types of dementia, including frontotemporal dementia, progressive supranuclear palsy and corticobasal syndrome.
I think to further confirm the diagnosis as it's so difficult to diagnose. Don't think it can make any difference to the treatment.
husband with cbd diagnosis
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