Well we had our holiday to Corfu which was great. Monday a bit overcast so went round the local villages in the car, wish life here could be so laid back and simple! However, down came the rain on Tuesday virtually non- stop for 24 hours,that’s why the Island is so green! Still we had our e readers so time passed quickly. In fact the whole week went so fast we were on our way home before we knew it.
I was a bit stressed out with the travelling as I don’t get out much these days . Going out,The gate was right at the end of the airport so a very long walk-might have to have special assistance in July as my legs are getting very wobbly! And coming home I was very uncomfortable in the plane seat,my left hand side achedfor the whole three hours. Since we’ve been back the internal shaking has got worse and standing up is becoming very tiring. I have an appointment with the neurology nurse on Tuesday so will see what she has to say. One year in from the diagnosis but was starting at least a year before that following heart attack in 2015.
I hope to help with research into this dreadful disease so will post any further news at later date. If we can find a cure or something to stop the progress of this menace future victims may be helped.
Would love to hear from anyone who has CBD and this wretched internal trembling as it’s taking over my life.
Lots of love to you all
Jayne x
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My wife has CBD and has had what the doctors describe as muscle spasms throughout her illness. She is being given Backofen to ease this, (there is a post about baclofen on this site. Now in the latter stages of the illness she is also being given Midazolam injections administered by District Nurses to help control the spasms. Sorry I can't offer a comfortable answer let's hope the research finds a solution. We've been living with the disease for7 years now and only now are they speaking of research.
Hubby has CBD and he has the "internal tremor" - he also has muscle spasms or "myoclonic jerks" (I think..) but only at night when he's falling asleep! So far, he isn't taking any drugs for it as it doesn't interfere with his life (must not be as difficult as yours?..)
Have you corresponded with Bargiepat? He has CBD, he travels and is a marvellous inspiration. Perhaps you could try a private message? It would be great to correspond with another who is living with it, wouldn't it? If I recall other members here who are CBD patients, I'll message you.
Hi Anne, nice to hear from you. Not fully au fait with navigating this site- how do you do a private message? I’m not on any meds at present as I was told they probably won’t help- the side effects of the usual ones look as bad as coping without but might have to give a try eventually.
Go up to the top of the screen where there are several icons: the one that looks like 2 overlapping conversation bubbles is private message. Click on it and you'll get a screen to compose a private message.
I know what you mean about meds: there is always a debate here about which meds work or don't. Lots to tead!
Dear Jane, I was diagnosed with CBD last October, although I have had my symptoms coming up to 4 years in summer. How long have you had your symptoms? I don't have the Trembling that you mention in your post. I suffer from being too hot and my head hurts but not like a headache. Just recently I have noticed that I when I'm texting that I'm forgetting how to spell things. Do you have any symptoms like this ? I also have some pain in my shoulder and neck this week. Speaking of Corfu over the last 20 years we have been many times. Maybe 19 times! We are not going this year sadly because we thought we better to try new places. Like you I dont enjoy the aeroplane as much as I used to do. We are going to Skiathos soon. I want to go but I'm not looking forward to the travelling. Thinking of you, Jeanette xx
How lovely to hear from you! Knowing that I am not alone is real boost, though obviously I would not wish this on my worst enemy.
My diagnosis was last June but thinking about it I used to play the guitar and had left hand problems round about the middle of 2013 maybe 2014, so had to give up. I also used to line dance but following treatment for a suspected heart attack in 2015 ( not heart disease but a split artery) I found myself holding my left arm rather than swinging it. Saw my GP in March 2016 but didn’t get a neurology appointment till August. Had MRI scan , electrical tests and lumbar puncture all of which showed nothing, and my neurologist said he was at a loss as to know what is was. Had to see him in June 2017 by which time I was dragging left leg and feeling like a zombie most of the time. That’s when he told me pretty bluntly , no other info’look it up on the internet’! Saw a different consultant at Christmas and referred me for a DAT scan which showed low level of dopamine and due to see him in August, but do have neurology nurse appointment today.
My GP and I stopped my statin and my zombie effect cleared almost immediately. I wondered if the trembling was down to the beta blocker I was on so have weaned myself off this over the last couple of months. No let up on the tremors but can move a bit better though balance is starting to worsen. I don’t have spelling problems yet but find looking at screens can make eyes a bit blurry though have had new glasses recently. I do find that my neck aches quite a bit but do have an upper body massage once a week which seems to help. No other medication at present, terrified of side effects.
Corfu is our favourite place and the hotel we go is aware of my situation. If things are ok we hope to return in July-fingers crossed. Like you we have been going there many times, since 2010 we have been lucky to go 3 times a year - we don’t spend much on material things but do like our breaks away.
All for now, hope the missive is not too long.
Love to you and try to keep positive. Enjoy Skiathos!
No further on I’m afraid . Make an appointment to see consultant in August and see her in 6 months. She gave me some info on counselling and disabled exercise classes but getting to them poses a problem as I’m not able to drive- can’t push the clutch down!
Still playing the waiting game but the shakes are still a nuisance. Seeing doc on Thursday hoping to get Diazepam short course which helped at Xmas.looking into LPAs and wills at present. Solicitors all want an arm and leg! Won’’t be any use to them though😂Jayne
Hi Jayne, my sister did LPA online for our dad which was cheaper! I've got one for heath and for finance. I went to the hospital today to see physiotherapist for a for assessment so from next week I'm doing it an 8 week course in the gym which should be fun. Can't remember the last time but I'm willing to give it a try! Hope you get on alright with the doctor. Jeantte xx
Went to the gym about 20 years ago and hated it. No plan was put in place and I was left very much to my own devices. Times I know have changed but the nearest one to me is about 8-10 miles on an industrial estate. I have had a physio comes to the house but only once a month and now that has dropped to every 3 months. All she ‘s done is give me a couple of sheets of exercises and left me to it and it is very hard to get motivated on my own. I am quite active round the house but do have a lady come in to hoover as can only do it on my knees as lose balance! No hospital assessment as yet, waiting on SALT appointment as voice is getting very soft.
I try to get out for a walk up the shops in the village and ok if I take my little shopping trolley- my crutch! I use my stick when going out with hubby for balance and can get around quite well.
Hope your muscles don’t ache too much! I am sure it will be really good for you. I used to line dance and walk everywhere. Sometimes even the 7 miles home from work - really miss being able to continue.
Hi Jayne. I know that feeling, the physio asked me yesterday what I liked doing so answer then I got bit tearful remembered things that I can't do! She was very kind and took my hand and said here we concentrate things we can do not what we can't do. I don't think with me it's big things but everyday things! I'm driving but don't go far from home, that because my hubby and sister put me off saying that wasn't worth it so unfortunately lost my confidence .
Speaking of driving I noticed that you live in Norwich. My husband uncle used lived in Diss before he died and his cousin live in Norwich. Originally came from Suffolk, My husband grandma was in service in Southwold, his parents met when Mary Joiniing Land Army and was sent to Norfolk from Leeds! We had many happy holidays over the years. We are coming to Norfolk in August, we get last year so we should make effort!
Trying again! Your physio sounds really nice. Can’t see mine doing that. I’ve had very teary week trying to do things but find they are now out of my range. As for driving , it ‘s no good me going somewhere on my own as I lose my confidence when I get there. We went to a local fete on Sunday and with my stick and hubby managed to get around quite well,but could not have done it alone. Even if we get an automatic I can’t see me taking it out alone.
My family were all Norwich born and bred but I was born in Cambridge and raised in Hastings following father’s job move. My eldest brother lives in New Zealand and my other one is in the next village but our relationship is very cool. They are both a generation ahead of me,being a very late baby! Being brothers and only 2 years apart they have a relationship that I can’t really be part of. However, I do keep in touch with my NZ brother although he is 15 years my senior. We’ Ve just got Skype working so it’s nice to be able to see him.
I remember years ago I had a girlfriend with a disease (a form of muscular dystrophy) and she drove entirely using adapted hand controls: she had a knob on the steering wheel and a brake control up at hand height. It was the family's car, adapted for her - ie not a special model of car. She drove fine! I wonder if you could get your car adapted??...
We are looking at an automatic but mine is also a confidence thing-the more congested the roads get the more I don’t want to partake. Anyway, If I get somewhere on my own I have to make a huge mental effort to keep going-i’m ok if meeting someone but just to go out -aargh!😩but we shall see.
Thanks Anne. Don’t want it to take over but have no choice when the trembles start! It’s bad enough when supermarket shopping, if I had to drive myself home aswel I’d be a wreck! Lucky hubby takes charge!
Dear Jayne. Nigel has CBD and these internal tremblings or spasms which seem to be worse when he moves from lying tos sitting or sitting to standing but can come at other times. He is on Buscopan, an antispasmodic, which seem to help. We have found that very deep breathing can make them ease off sooner as he is then not so tensed up. How lovely that you got to Corfu. Good on you. We have not been there for many years. Are te signposts still only marked on the one side which is ok if you are coming out of Corfu town, but not if you are coming the other way !! I don't think I have ever seen so many tourist cars doing 3 point turns. Happy memories. Love Ali B x
Hi Ali B, sounds similar to me. Mine is worse in the morning,but it is always there. I will mention it tomorrow-I’m on no meds at the moment as everything I ‘ve read or been told points to no help for this horror.
We know the road up to our resort(3 times a year!)sodon’t really look at the signs but apart from a dual carriageway out of Corfu town and around Sidar i and a few marina extensions there, nothing much has changed. We tend to stay in the north where our resort is as it has now become a home from home.still the same old pot holes!! We don’t shift far as we are only there for week at a time and love to soak up the sun
Corfu home from home sounds wonderful. We ended up doing that with Kefalonia where the minute we stepped off the plane all tension went and we were home again. Sadly we cannot now get there as certainly not wheelchair friendly and following my breast cancer treatment in 2016 I am no longer allowed to soak up the sun. Such a pity.
Yes we are in the uk, in the south west. Are you?
Good luck with your doctor is he feels any medication will help. They do not stop them for Nigel but do make them last less time and with less severity.
All the best. Love Ali B xx
PS I love your Aprilfool20. Nigel and I have both been widowed and we married on April Fools Day 2000.
So sad to hear you can’t soak up the sun,hope you are all clear. Must admit I now spend most of the time under a parasol but still manage to get a bit of colour so it looks as if I have been away. For my sins my code comes from my mum born on April 1 .my dad was 29 February, what a mix!😄
I am in Norwich, East Anglia and luckily we have a support group that meets every 4-6 weeks. One lady is helping with research so I hope to follow suit.
So sad for your loss. My mum died 24years ago when I was 37 everyday still little things remind me of her. Wish I could share my feelings with her now. My mother in law is82 this year and is lovely- treats me like another daughter!
Unique! Ha ha ! Good one!
Jayne😀xx
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Dad has CBD and I don't recall him ever complaining of something like this. He'll have the occasional limb tremble but more often then not he isn't even aware of it.
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