I was diagnosed with CBD 5 years ago and have never spoke to anyone who has heard about it ! I felt so isolated and then I came across PSPA and saw that is was linked with my condition. So fantastic to find this platform to moan on !
My biggest problem I have at the moment is dreadful anxiety ! That’s even worse than the pain and frustration of my declining mobility . Does anyone else feel this ?
Hi Maria, this is Jen! Welcome! You will certainly find people who know about CBD and can help you. When I joined here in 2016, I also knew very little and my hubby had something like CBD. No-one understood and he was initially diagnosed with Parkinsons disease. As time passed I was sure this was not the right diagnosis.
I know you will find people here who will be able to help, even maybe help with managing your anxiety, as well as many other difficulties you face now and maybe in future. I have found all extremely helpful people- and a very caring community!
I can't help you with your problems as my hubby never appeared anxious - but just wanted to welcome you! Someone is sure to be in touch very soon!
Hugs
Jen xxx
Hi Jen .Thank you so much for replying ! I was also diagnosed with Parkinson’s which I was only starting to accept when I was the diagnosed with CBD . I think it’s the isolation from this disease which is the worse . I hope your husband is still with you ? X
No longer here, Maria. He died in June 2016. He was only diagnosed about a month beforehand, so I was the anxious one, not knowing who to turn to for a 'sensible' diagnosis for very fast changing symptoms!If you long touch my smiley face logo, you will be able to read our story. The speed of the changes may alarm you, but it seems to be an unusual and different strain to most other CBD experiences.
If you use the search function at the top of the page, you may find earlier posts that mention your concerns and the thread may give you some answers. Keep exploring the site as you can find others near you, and occasionally group meetings. I know there have been a number in UK, in London at the 'Brass Monkey' I think the pub was called! Obviously those are a mere memory in this time!
I am in New Zealand, and planned to travel to UK in 2020, but of course it didn't happen.
I see you are in Ireland. My hubby and I spend our first holiday together travelling around the southern peninsular around Glengarrif area - a distant memory now, some 60 years ago!
Hugs
Jen xxx
Oh I’m so sorry about your loss and I would love to read your story ! The disease as affected me slowly up to now thankfully but I have went from running marathons to some days struggling to get through the day . I will play with this site and see what else I can find . Thank you for your kind advice . New Zealand is on my bucket list . I was lucky to travel to California and Hawaii in 2019 and met a lovely couple from your part of the world . Sending you lots of hugs x
Hopefully we will get chance to travel safely again one day!
Note there may be confusion with a search for CBD. CBD the disease will also bring up comments on cannabidiol (cbd or cannabis oil). Some have been able to try it on here and have found it helps relax muscles. Am not sure whether it would help anxiety.
Maybe someone will respond with their experience, and ease of getting hold of it!
Hugs
Jen xxx
Hi honjen43 and Mariawatters!These are our experiences on PSP disease with CBD Oil:
We apply with enough success a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.
In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:
healthunlocked.com/psp/post...
Hug and luck.
Luis
Hi Maria,My husband was diagnosed in 2016 and passed away on Easter Sunday 2019, he was actually diagnosed with PSP straight away, and spent his last 11mnths in hospital, because of all his falls. We used to get him CBD, but because of his hospitalizations it was difficult to give it to him. I live in Carrickmacross Co. MONAGHAN, and I used to attend a lot of the meetings, which I thought was a great help as people and patients had different stories. I feel for you and your family on this terrible journey.
Regards
Mary Whelan
Hi Mary . I’m so sorry to hear about your loss. It’s must have been so hard for you to watch him go through that .I find it hard as no one has heard of these dreadful diseases . I left my consultants office with lots of information on parkinsons which of course i dont have .
I attended a conference on Zoom on Saturday . It was so interesting as a crowd of neurological consultants were doing the talks. It was mostly about PSP .They are at least now doing trials etc but of course funding is a big problem as the disease is so rare .
I count my blessings as I have 3 gorgeous grandchildren who keep me fighting
jacqui x
Hi honjen43 and Mariawatters!
These are our experiences on PSP disease with CBD Oil:
We apply with enough success a dose of 3 to 6 mg of CBD Oil (20/1-CBD/THC) via subling, usually before dinner, to stimulate appetite, reduce anxiety and as a co-adjuvant analgesic in neuropathic pain.
In periods of patient more intense anxiety some increase the frequency of the dose by applying it before lunch and before dinner on the same day. If you are interested see:
healthunlocked.com/psp/post...
Hug and luck.
Luis
Sorry to have to welcome you to this site but glad you have found us and hope you find it as helpful and supportive as I have. My Mum had PSP. She suffered from anxiety and mild depression and was eventually persuaded to take medication for it, which really helped her deal with things and lifted her mood. Personally I have found using aromatherapy oils have helped me relax (lavender oil on my pillow helps me sleep) and breathing exercises.
Best wishes xxx
Hi there . At the moment I’m struggling with anxiety and I think it’s because I was a runner which obviously distressed me . I know most medication for anxiety is not really a long term answer and I’m on a lot of medication for my condition as it is .I attended a yoga class once a week when I was diagnosed and it helped . I’m going to try the lavender and maybe a few relaxation exercises before bedtime ..... thank you
I’m so sorry you can’t run anymore! That’s amazing that you did marathons! Even short term stopping running is a bummer, I’ve been there with injuries. You’re in a different kind of marathon now. Just like in any endurance activity, the key is to be patient with yourself!
Join the club thatn no one wants to be in! I was diagnosed in June 2017 and have been on several research projects at addenbrooks,Cambridge. My diagnosis has now changed to the even lesser known MSA and struggling with mobility issues. I’ve got a stairlift and rollator and grab rails where possible. Get a social services assessment and see an Occupational Therapist to advise what you need now and later xjane
Hi Jane . It’s horrendous having a disease no one has heard of ! I’m lucky that I’m still on my feet at the moment although I have very little mobility in my left arm and hand so struggle with little things like tying laces , pulling on jumpers and shopping is a nightmare as I can’t manage to pack a bag and then struggle with getting my purse out of my handbag . I end up stressed and feeling foolish . I feel like putting a sign on my back to say I have CBD and yes can you help me . So I rarely go shopping etc now , thank God for online ! I was going to move to a bungalow but then lockdown hit plus I have been in this house for 25 years so lots of memories of my kids growing up , we opted to knocking down all the internal walls down stairs so I have a lot of space now for the inevitability . I think it’s good to get prepared in advance especially as I’m still able to clean and organise at the moment. I have a good husband who cooks and cleans so a lot of positives for me ... I’m very lucky . So nice to talk to someone who is in the same situation so sorry for long reply 😂
Maria,
I am sorry to hear you have had 5 years in the wilderness. Ruth my fine wife is 61 with CBD and bit further down the road than you.
Dystonia pain in her foot was solved by Botox injections. The foot is pretty useless and turns in badly but at least no pain.
Anxiety and insomnia - Sertraline 50mg in morning, Mirtazapine 15 mg at night. There is no point in being unhappy and anxious. Ruth's mood is good despite all and there seem to be no side effects.
Hope this helps.
Richard x
Hi Richard .I’m so sorry to hear about your wife . I have dreadful pain in my left foot and it’s starting to turn in so that is interesting about the botox injections . I haven’t seen my consultant in over a year and even then he hasn’t much interest as I think he’s lost as to what to do or say ! I wouldn’t wish this disease on anybody but I’m so glad to talk to someone who knows what CBD and interesting to compare notes , so thank you x
Maria, You foot sounds exactly like what Ruth had. The pain has never returned after receiving the Botox injections into the bottom of the foot. So do please see if your neurologist can organise it.
Richard x
I have CBD and have had severe anxiety problems. They mostly disappeared when I started taking Trazodone. It is a cheap generic drug that has been around a long time.
Hi Drjazz, thanks for this info. My husband David also has CBD and has suffered anxiety for a number of years now. How are you coping with your CBD? David started with the alien hand syndrome first, then after 18 months, he went to a specialist and was told that he had CBD.
Hi Maria,so glad you found this place. I'd be lost without it. My Mum has CBD and we're based in Ireland too. Lovely to meet you. xx
Hi it’s so nice of you to get in touch .I live in Lisburn N.Ireland do you mind telling me where you are ? When was your mum diagnosed? xx
Hi Maria, we're in the South East. Mum was diagnosed initially 6 years ago with early onset Alzheimers and then CBD nearly 3 years ago.
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