CBD: I'm new to this forum having been... - PSP Association

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Confusedandlost
Confusedandlost

I'm new to this forum having been diagnosed with CBD in May 2018. A year ago I was fit and healthy with no medical condition then suddenly I got a tremor in my hand and then was diagnosed with Parkinsons in Sept 2017 . After 8 days in hospital in May that changed to CBD. I seem to have gone downhill quite quickly and seek information from others with this condition. I dont currently take any medication as Sinemet made no difference.

I started to get muscle spasms about 2 months ago in a limb but this has now spread to all parts of my body. Its similar to cramp but not as bad, does anybody else have this?

I also get ridiculously tired doing practically nothing and really don't understand why.

Any help would be appreciated.

Thanks

41 Replies
oldestnewest

Welcome to the site. Muscle spasms, contractions and tiredness are all something dad has experienced, diagnosis Jan 2016. Exercise much as possible since this seems to benefit most people. Search on this forum for past posts will help a lot in preparing for any future issues. Work with family members to have a plan as to who may want to step in on your behalf legally.

Ron

Thanks

Sorry to hear you have CBD, but welcome to this site which you will find very helpful. My wife has CBD diagnosed in 2013. She is on Baclofen for muscle spasms. You will find quite a number of posts re Baclofen on this site which should help.

Thank you so much

Hidden
Hidden

Hello my husband has a recent diagnosis he is 55. Are you a similar age ?

He has Thiamine which seems to help x

Sorry you have had to join this forum but people are so supportive x

Confusedandlost
Confusedandlost in reply to Hidden

Hi, I am 69, thank you very much for your response. I hope your husband is managing ok.

Hidden
Hidden in reply to Confusedandlost

Thank you x

Hidden
Hidden

Oh and my husband also experiences fatigue

The fatigue comes from the brain working overtime to make up for the cells that have died. They are doing double duty and get tired easier. At this point anything Larry does tires him.

For muscle pain you might try massage therapy.

That's really interesting, I've been very active all of my life I couldn't work out why after doing very little nowadays I need to sit down and rest. Thanks for the tip about massage therapy.

Hello Confusedandlost and Welcome to the site!

As others have said,r there is a lot of helpful information in the historic posts here. Use the search window in upper right of screen, or type your question into Google but be sure to add Health Unlocked into the query.

This is the time to do things that were on your 'bucket list' as you will likely lose strength down the road. My husband had CBD and found physio helpful as he got increasingly disabled

He also walked with a walker and did aquacize. I don't know if it prolonged his life, but he was somewhat mobile until the day he died.

Don't want to overwhelm you with info, so do keep in touch with us and we can help with your questions as they arise.

One last thing: do note our active members who are living with CBD (& PSP): some work, some travel, some are artists, musicians - and we have loved ones who've lived over 10 years with it!! Be positive - we'll be here for you.

Anne G. XXX

Hi Anne G,

Thank you for your message. I am a bit overwhelmed at times as things are happening so quickly but I'm grateful to be able to talk to people who have first hand knowledge.

Thanks again for your reply

Alan

I love understand that the chronic fatigue is due to muscle spasms using up tremendous amounts of energy which is also responsible for weight loss too. The lovely Physio said this was the reason for Bens weight loss.

Love Kate xxx

Thank you for the information.

Alaan

Hi did you get my message? I am 69 years old and recently diagnosed with CBD . I am not on any specific tablets but have lots of gadgets provided by OT . Wherabouts are you? Regards Jo

Hi Jo, I will be seeing OT in the next couple of weeks and hopefully they will be able to suggest things that will make life easier. I live in Havering.

Thanks

Alan

Hello, and welcome . I am also new to the website. My husband has had CBD for 12 years. Prior to onset he was (jokingly) the "king of the fitness center" in our community-- Nordic track, stair step, rowing, etc were things that he did with skill, and also was a good golfer. It is startling to see how much decline there can be. There is an article on this site which I saw today: it is an overview of muscle cramps and what can/cannot be done about them. That was a very painful early phase problem for my husband. The article destroys some myths about foods and liquids reported to prevent muscle cramping and so is not encouraging in that regard, but it will save you from buying bananas, apricots, mustard and fancy waters which you will end up throwing away. The advice to work through your bucket list is good counsel; when mobility declines his life and yours will change. But the kind people here will still be there for you. PS- Take a hard look at your finances and try, if you can, to have a 5-year plan or so. This may help you to identify resources that will be helpful later. Don't know if you are in the US, but if so, for example, the Veterans' Administration Medical Center has been an amazing source of medical treatment and advice.

Marilyn

Hi Marilyn, I am in the UK. Thank you for the information and I hope both you and your husband are coping ok.

Best wishes

Alan

I was diagnosed with CBD in February 2017 having been previously diagnosed with Parkinson’s .the only thing I would tell you is that everyone does it differently. Make sure you get the best neurologist who actually knows what he is dealing with as many know very little about this terrible disease. Where do you live? If in the UK there seem to be two centres of expertise one in London and the other in Cambridge. Good luck on your journey through this terrible disease. I hope this has helped.

Jackie C

Hi Jackie C,

I am a patient at the National Hospital for Neurology and Neurosurgery in London and they do appear to have expertise in CBD. Thank you for taking the time to respond.

Best wishes

Alan

Hi Alan, who is/are your consultant(s)? My mum has just come back home from what ended up being 10 days worth of tests to confirm her CBD diagnosis in January of this year.

Hi Erialcw,

The main consultant is Dr Jarman but there were other doctors and a professor involved in confirming the diagnosis. I am part of the research project at the hospital now.

Alan

Hi Confused,

We're in the same boat (I just wrote a long reply but it got lost). My husband was diagnosed with tentative CBD this spring as well, after his arm stopped acting normally.

--also "Lost"!

Hi Alan I was diagnosed with cbd last October. It's 4 years since I first something wrong. I am mobile but have problems with my left arm,speach. I also suffered from fatigue . I am living my life but at slower pace! My sister said to me after the diagnosis you can give it an now or you can fight it. I know we can't beat it and every day can be difficult but try to stay positive and strong. Remember you are not alone this is a wonderful site full of people with who can advice and support you

Jeanette xx

Hi Jeanette, thanks for the words of encouragement. I'm glad I found this site, I'm sure its going to help.

Best wishes

Alan

Recently joined this forum. My wife was diagnosed with CBD in October 2016, it was initially thought to be Dementia/Parkinson’s. The symptoms started in March/April 2013 when movement issues started, involuntary movements in the left arm/hand and memory lapses. Mobility is now the biggest issue, 95% of time out of the house Jean is in a wheelchair. Her left hand is of little use and right hand is going the same way. We fight it by trying to lead as normal a life as possible. Getting out everyday, going to the theatre and concerts, various memberships help get us out and about. The neurologist at our local Ashford & St Peter’s Hospital has been excellent.

Hi TimGill12

Thanks for the reply. I am still able to get out and about albeit my walking ability is diminishing. To the world I'm being very positive and carrying on as normal but occasionally reality knocks me for six but I suppose we all feel like that at times in this situation. It sounds like you and your wife are making the best of the situation.

Good luck

Alan

Hi Alan,I was initially diagnosed cbd in June 2017 by one consultant then saw another and he said Parkinsonism. I am living on tenterhooks from day to day as I have these internal tremors that seem to take over whenever I get up on my feet. Also suffering with fatigue. First noticed something wrong when I couldn’t tie shoelaces and left hand side very weak. Can move left hand and leg but walking unaided is not recommended. I have put some other things on the site if you want to read. Trying Madopar at present but having a few problems. Chin up even though it’s so hard to reconcile. Hubby works all day so don’t get out much now. You’re lucky to have professionals who are in the know. I am going to Cambridge this week for the ‘pippin ‘ research project so we’ll see what that brings up.

Jayne

Hi Jayne,

Thanks for your reply and I will look at your previous posts. Good luck with the research project in Cambridge.

Take care

Alan

Just curious Jayne..Why did the second neurologist say Parkinsonism instead of CBD??

Anne G.

Don’t know.

He said if he had seen me first he would have diagnosed mild Parkinsons as I had no swing in my left arm,but then changed it to Parkinsonism ,which could be any of them ,in his letter. The first consultant judged cbd mainly,I think, because of my dragging my left leg and the rigidity in my left hand. However with the physio exercises these seem to have eased though not much strength or dexterity. Still having trouble washing under my right armpit!

Have been on Madopar low dose for the last two weeks and I do think getting around has been a bit better but I’m still very nervous of leaving the house on my own, confidence problem in case I fall and also feel very vulnerable as I tend to look down a lot so not aware of what’s going on around me when I’m out.

The second consultant is the more experienced in PD . I have since found out that there is another one who specialises in cbd but trying to get him is hopeless. I am going on the PSP/cbd research project tomorrow so hope things might get a bit clearer-pigs might fly!!

Jayne

Hi Jayne,

For what it’s worth, I was first diagnosed with Parkinsons, that changed to CBD about 9 months later. To get the CBD diagnosis it was explained to me that I would need to see at least two doctors who had experience of CBD and who agreed that I had that disease. I was told that it is a matter of opinion as there are no scans or other medical procedures that can confirm it, and it is only confirmed post-mortem when they examine the brain. Hopefully you will find out more tomorrow.

Good luck

Alan

I'll be interested to hear how it goes :-)

Good luck!

Anne

Thank you Alan, it’s all a bit hit a nd miss. Do you get what I can only describe as internal shaking and weakness like you just want to collapse? No one else can see it but it stops me doing things cos I get so tired. It’s all deteriorated over the last 4 months. I wasn’t too bad when we went to Corfu, then legs started getting weaker and became shakier.

Jayne

Hi Jayne, no I don't get internal shaking but I do get very tired among other things which includes bowel and bladder problems. I'm on the 'Prospect ' research at hospital which I imagine is similar to 'Pippin' at Cambridge. Do let me know how you get on.

Alan

Tell me about bowel & bladder!! I had a heart attack back in 2015 and haven’t been the same since!! Lots of prunes and hardly anything that acts like a diuretic! 🤭😂

Hi Jayne,

Prior to being diagnosed with Parkinsons and then CBD constipation was becoming an issue so much so that I have been in hospital twice, once for 5 days and another for 4 days while they tried to shift it. The normal laxative medicine did not work neither did enemas and eventually they used a method called manual evacuation. (I hope thats not too much information) The knock on effect while I was constipated was that I was often unable to open my bladder. This problem has still not been resolved although I am being seen by gastroenterology and urology departments at the same hospital as for CBD.

Alan

Oh you poor thing. Hope they can get it solved-for me it’s a obsession if I can’t ‘go’.

Jayne

I had dystonia which is mmus,e cramps most nights until I toook soluble magnesium . L have PSP.

Janet

Professor Huw Morris is the main expert in CBD based on Queens Square. He is involved with the PSPA research team and charity. His face is often at the bottom of emails from PSPA.

Hi Alan I too have some constipation although not had to go to hospital by the way wherei is haverimg ? Jo

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