Just wanted to introduce myself to you all. I was diagnosed with Parkinson Plus Syndrome in July 2013 .My consultant said it was either MSA PSP or CBD but in his letter to my Gp it said Corticobasal Degeneration . In further correspondence Parkinsons Plus syndrome is used rather than CBD . I guess this is because they don't really know whats going on until the death of the sufferer . The consultant wrote that I had an underlying parkinsonism which was obviously not idiopathic and that I had atypical features such as clonus in the ankle. I also have cogwheel rigidity in the right wrist with a resting tremor and bradykinesia. I also had a positive datscan . Since last year a specialist neurology nurse that I see monthly says I also have dystonia in my right leg with the clonus . I was put on sinemet 125mg three times a day to start with was not feeling a great improvement and am now on Stalevo 100mg . Again this is not working brilliantly . I take diazepam for painful muscle contractions in my arms which are the most painful thing I have ever experienced but the diazepam does help with these . I also have baclofen 10mg and clonazepam 0.5 at night as cant get comfortable in bed . Really glad to have found this site as it seems to be the best place to discuss things and after reading a few posts a lot of you say there is not enough support out there which I agree with .When I was diagnosed my consultant said he would put me in touch with a pd nurse which never happened and then my Gp said it was too early to need a parkinsons nurse !!!!!! I would be delighted to hear from anyone who is going through this as sometimes I think I need a little encouragement !!! I was thirty nine when I was diagnosed and was just absolutely knocked for six and didn't know where to turn so again I am so glad I've found this forum. Thankyou for reading folks
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CheekyChops1973
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Welcome CheekyChops, I'm so sorry you have cause to join us but hope you find as much help on this site as I have. I thought my husband was young, diagnosed with PSP at 62, you really must have been "knocked for six". We were put in touch with the Parkinson's nurse very soon after diagnosis in 2010 so I don't know how it can be too early.
CheekyChops, my advice to you is go out and do everything you have ever wanted and are still capable of doing now. Don't wait until tomorrow. Make lots of happy memories for friends and family and have as much fun as you can.
I do hope your pain can be managed and you still have many years of fulfilment.
Please don't be sorry that I have had to join you . Its nice to speak to people who understand how I'm feeling . I was knocked for six when diagnosed and feel as if I am never going to come to terms with this but I keep on trying . I want to make happy memories for my friends and family but find it difficult because I don't feel like I'm the same person as I was before the diagnosis ! Taking the dog for a walk in a moment which I am glad I can still do and am meeting my sister at the same time who has a little dog too . Seeing a physiotherapist tomorrow to review daily exercises I've been doing and I wondered if you knew anything about the botox injections you can have for dystonia as I'm thinking of asking her if I would be eligible !! Not much of the medication I take seems to work except the diazepam and clonazepam which knocks me out at night !!! This is the only time I feel able to escape everything that's going on !!!! Thankyou for your kind words and all the best to you and your husband who I bet is very brave . I wish I could be more like this !!!!!
i agree that cheekychops should get out and do the things he is capable of and to enjoy his friends and family as mush as he can .. it is tragic that he has this vile disease so very young .. keep strong
Thanks for your kind words . I agree with you . This is indeed a vile disease and something I'm really struggling to come to terms with . I'm still quite physically strong but am suffering mentally more than anything with coming to terms with whats happened . I'm asking everybody if they know anything about botox injections that they say you can have for dystonia as parkinsons meds don't seem to be working too well ! Sorry Shasha don't know if its yourself with this disease or your partner or someone close to you but its always nice to hear messages of encouragement . Thanks again and hope to speak again soon . All the best
When things first went 'amiss' I felt my husband and I were being given a bit of a run around with who to meet and what to discuss. It included the need to meet with a Parkinson's nurse or not. Then I found why with the Parkinson's nurses. Though extremely considerate and polite the organization was basically stretched to limits on resources (& funding strictly speaking was only being allocated for those diagnosed with Parkinson's disease).
Also I later found out - that more could be gained (in most cases) from asking people placed in similar situations how something was working (or not) rather than going through a third party. The same may also apply to you?
You have mentioned getting comfortable in bed is difficult. For my husband it has been a major issue over the years which lead to me to visiting doctors begging for assistance. (For when sleep deprived I am unable to function!)
He now uses an electric bed (on his second) and a egg shell like mattress - recommended by a neurological nurse.. Sheets with a satin inserts also have been a great aid (Promoted by Parkinson's Association Aust). There have also been changes to lighting and air-circulation for his bedroom which seemed to have helped.
I'm wondering are theses things that you are using, have managed to avoid or not in need of?
As for my husband each have largely been to aid in mobility or reduce leg, back and shoulder pain - not so much for arm pain and contractions. Other than medication, what sort of therapy assistance are you receiving for your arm contractions? Do you receive any sort of homeopathic or 'natural' therapy treatments? As their value and merit are something being mentioned through this site of late.
Regards,
Alana - Western Australia
N.B. I think you may get some responses to indicate that you should be doing all you have wanted to do. Take heed - they are right! Life is too short for all of us - If you have ever wanted to do something wacky and thought I'll get around to it one day, or go to some place or visit someone or something at some time - don't say I'll get around to it - "Instead - Set a date - for it to happen!". Yesterday I sat in the rain for half an hour - Anyone watching would have thought we had truly lost the plot - perhaps a little - but it was beautiful, tomorrow will be... who knows....
It was so kind of you to take the time to respond to my message . Thankyou. Yes I feel that I should be doing everything I ever wanted to do but am still feeling a little sensitive after diagnosis . Don't know how I'm ever really going to come to terms with it . I get annoyed with myself because ever since the diagnosis I felt my future dreams and plans just left me and I slipped into deep depression. I was working in a stressful job anyway and was already taking antidepressants at the time of diagnosis . Want to pull myself together but I feel as if I'm stuck in this loop . As for bedtime - I toss and turn constantly until the clonazepam kicks in and then I just fall asleep which is the only time I feel I can escape this thing . My right leg is tremoring as I'm typing this message and the movement in my fingers is bad !. Havent looked into alternative beds but had occupational therapy round who gave me a bar to lift myself up from laying position in bed when back and neck are stiff . I've also been given a bathboard as that seemed to be mostly when the muscle contractions were happening . Was getting stuck on the edge of the bath waiting for the pain to pass . That was before diazepam though which seemed to ease the pains .I'm seeing a physiotherapist tomorrow to review the exercises I've been doing daily . I wondered if your husband has ever had the botox injections for dystonia in the leg or arms ? as this seems to be what is happening in my right leg almost constantly ! Please don't get me wrong but I am still mobile but a little stiff when walking . Still walking the dog but fell over yesterday stepping over a chain fence . It was very low but don't think my right leg would lift high enough to clear it !!! Had a look to see if anyone had seen me for fear of embarrassment but Nobody was watching !!! I I do take supplements etc but haven't looked into natural therapy etc Thankks again for your kindness !!!
Don't ever let embarrassment get in your way. Just think a little differently - After all someone must have moved the chain fence - didn't they?, sure it wasn't your dog - they have remarkable talents not fully appreciated!!
As for botox - no not tried, and hasn't been suggested.
Unfortunately depression is probably a no escape like you say - but just think of it being pushed far enough aside that you set some targets. Like you said you're still mobile - to canoe (?) I did a few weeks ago and loved it, or go in a hot air balloon (some think it to be boring but anyway Its on my list). As for considering marathon running - well i think if it was mentioned to your physiotherapist & counselor/doctor she/he may look at you strangely.. but there is always a helicopter ride over some crocodiles to consider (For me I wasn't prepared to touch even the baby ones - maybe you are? so I took the ride as it seemed the next best option.
So maybe that's what life has to offer us - if one option isn't there grab the next best..
Regards,
Alana - Western Australia
N.B. The overhead hook/bar is something my husband continues to use many years later - despite having an electric bed so keep hold of it - its a handy gadget..
CheekyChops, If you are mobile and can "go and do" then my advice is do it now. If you desire to travel, go now. I know that we didn't realize how quickly (6 years) the diseases get their grip. Once you loose mobility even to the point of a wheelchair your options decrease. Places you'd like to visit may limit your access or minimize the experience at a minimum. I wish that we had thought ahead about mobility and done more travel etc. when my dear wife was able. Do you have a good support group (family, spouse, children, church, etc.)? This is important. My wife isn't mobile now and can't get out but with our circle of friends from her former work crew and our church and family we are blessed to not be totally isolated. If you are going to need your children to help I hope they are close by. We are here for you if you need anything. jimbo
Just walked the dog about an hour ago and walked round the chain fence this time !!!!Quite a nice night here tonight although theres still a bit of a nip in the air . Got one target at least . Going to see Kate Bush live in London in September and really looking forward to it so that is something that is keeping me going and hoping that I'm fit enough for it . Staying in a hotel overnight then back next day . Don't know if you've heard of Kate Bush there in Australia . ? Always been my favourite music artist and it will be a once in a lifetime experience as she hasn't toured since 1979 . Couldn't have come at a better time . You sound so positive despite your husbands illness and cant stress enough all the best to you both
My husband and I went to Australia and New Zealand for a month after his diagnosis visiting our brothers. I am so glad we did cos no way could we have done it had we hesitated
Dear CheekyChops1973,
Sorry to hear about your problems but this is a great site to turn to. It is believed that dystonia can be triggered by long term Parkinson's levadopa medication so check this out to make sure this is not affecting you. There is no cure for dystonia but it can be controlled to some extent, the botox may help you if you can give it a trial. It is also thought that cannabidiol or medical cannabis is good but here in England it is very difficult to get it prescribed. You need a really good consultant who is very knowledgeable and up to date with things. A private consultant may be the way to go, not NHS. I know this because my dad suffered like you with this condition and I had to search high and low for help. Best wishes. Nader
Thankyou for your reply . So nice of you all to respond to me. This does seem to be the best site to discuss things . I've been to see a physiotherapist today who gave me a thorough assessment and I said to her near the beginning of it that I was wondering about botox . She is going to get together with a specialist support nurse that I see monthly to discuss this possibility !! Nothing else seems to be relieving this thing in my leg at the moment . She noticed that on examination the muscle above my kneecap was constantly contracted and I couldn't relax it . Also cant move my right ankle right or left as I have clonus at the ankle . I've heard that botox can relieve the beats that I get in my ankle as it uncontrollably moves from side to side !!!Also have tremor in the right leg which is more of an up and down motion rather than the sideways in the ankle . Did your dad have similar symptoms to these ? The support nurse practioner that I see said (last time I saw her ) it might be worth trying me off the levodopa (stalevo 100mg) to see what happens . Think she might try that before the botox - I don't know !!!! Thanks again and kind regards to you
CheekyChops, Welcome! I don't like it when PSP, CBD, MSA, etc. are called a Parkinsonian disease or Parkenson's Plus. I think many in the world are well aware of Parkinson's and have been touched by a friend or family member with Parkinson's. In my view, PSP, CBD, MSA, LBD, are much, much more devastating than Parkinson's. So using those terms, to me, seems to "water down" what is really going on with these diseases. These diseases are far more devastating than Parkinson's. Not taking anything away form those suffering with Parkinson's as I know they struggle as well. I just believe in calling it what is it i.e. PSP, CBD, MSA, and not lumping it in with Parkinson's. It's fine that the medical profession chooses to lump them in a group but as a caregiver I'll call them what they are. Not jumping on you in my first post but this is a sticking point for me and I'd like others to consider using the true disease names.
You sound like a brave person. That's a good thing. My wife and I decided early on to literally live one day at a time. We aren't worried about what "stage" she is in. We aren't worried about what symptom is next. It could never arrive so why worry? It is possible to get aspiration pneumonia or have a bad fall and never make it out of "stage 1" so why worry about it? Just be informed and plan ahead for mobility loss which is almost a "given" in these diseases. Things like "are you in a one story home where wheelchair access is possible?" Do you have a "wheel-in" shower to use later when you can't walk into a shower or stand to bathe?
Try any things you believe might help in dealing with the disease. It appears you are doing that by taking appropriate drugs to help. You didn't say if you are in the UK or USA or Aussyland.
Stay tuned on this site for great information and help whenever you need it. Also you'll get moral support when you want it. Great group of people here for you.
Thanks for your message . Yeah I know these diseases are more devastating than pd but I wouldn't want to trivialise what these people go through either. Cant believe the response I've had on this site . In fact , I wish I had come on to it sooner . Everyones been so kind with encouragement etc . I felt when I was diagnosed that I could've coped with a pd diagnosis and I said to the neurologist 'are you sure it not just pd ?'. My mum was with me at the time and she said 'what makes you say its Parkinson Plus !?' He got me back up on the bench and demonstrated again why he thought MSA PSP or CBD and it was because of my leg going beserk as he iniated a reflex by pushing my foot upwards towards me . I also had a positive datscan which he showed me and there was quite a bit of space where the dye they inject into you hadn't shown up on the pictures. Meaning dopamine loss or dead cells ! Don't understand it to be honest!!!I'd been having problems for quite a while before diagnosis such as stress, anxiety and depression and was having severe muscle contractures in both arms . Lost mobility once as back was bad and could hardly stand up . Went to the Gp surgery I said 'whats wrong with me ' he said 'just a bad back ' . I knew something was going on and I don't know how many times I was back and forth to the surgery with symptoms while still working . Then started to realise my fingers wouldn't move properly . Couldn't do 'air piano' ! I was then sent to neurologist as gp thought I had carpal tunnel syndrome! It wasn't until I asked for a neurology appointment again that I got referred and that was going to take three months . So my dear mum paid for me to go private and I was seen within a week . After examination was told ' its either pd or variant or neurodegenerative disease'. I am on the council list for a bungalow with level access shower as that is one of the things I worry about - not being able to keep myself clean ! I am in the uk in Suffolk by the way and would be interested to know more about you and your wifes situation . What drugs you have tried etc and your journey to diagnosis .All the best
Just a quick note before my time on the library pc runs out - as you are in Suffolk, you will come under the PSP Association Eastern Region Group for PSP/CBD/MSA - meets just south of Norwich every six weeks or so, with other events elsewhere in the region.
Thanks so much for your message . I'll bear the group in mind . Quite overwhelmed by the response I've got from a lot of kind people on here . I guess I can find out about the next group meeting by calling the association itself ? You take care too and best wishes !!!
My mother in law,72, has cbgd alsoShad formerly been diagnosed with CerabellarAaxia, MSA, PSP adand finally CBGD. You are very young for this diagnosis and some symptoms appear different. We were referred to 3 different neurologists and diagnosis changed, but as her disease progressed it revealed more clues as to what wss going in with her. Don't be afraid of getting 2nd and 3rd opinions. Google cbgd and find the support group....tornado something in the address. Families gave 7 different accounts of the, path cbgd took in their loved ones life. It was very informative. I pray your diagnosis proves to be wrong and turns out to be something that has some proven remedies for it. Take care and continue to stay in touch, people here truly care.
Again another kind person has responded !!! Thankyou. Just had a brief look at that internet page you were describing in your message . Seems to be some similarities with the caregivers accounts such as my handwriting is getting progressively worse and it takes a lot longer to write a small letter . I am still able to do most things I did before diagnosis but have to use left hand to pick up my knife when eating and cant do things like brush my teeth or shave with my right hand . Everything seems to be down my right side and when I do use my right hand for typing etc I get chronic neck pain and it can set off a tremor in my leg . When I try and shave with my right hand - my foot tremors from side to side and my toes tremor. Cant move my right ankle left or right at all and go a little off balance sometimes because of this . Saw my pyhsio the other day who made me walk across the room a few times and as I walk my big toe points up and outwards and my little toes curl up or under so I tend to be walking on the side of my foot on the right side . Still getting around though with no aides !!!! I don't know how to go about getting a second opinion although my neurology nurse practioner said I could change hospitals to see a different neurologist . I asked the physio the other day if I could try botox in my right leg as I have trouble ever getting my right leg and ankle comfortable especially at night time . Throughout the time between the diagnosis and now I've felt as if nothing is really working and that I'll have to just sit it out . Perhaps I should ask for more answers . Physio said there are supports etc you can wear to help stiffness etc in the leg and arm . One bit of good news is physio and support nurse are meeting up at my next appointment to discuss botox possibility etc. I am taking stalevo 100mg at the moment three times a day with a half sinemet at night with a baclofen 10mg and clonazepam 0.5mg to help me sleep . Not sure the stalevo works very well !!! In fact the support nurse said she might try me off the parkinsons drugs !!! I was also getting very painful muscle cramps down both arms at one point and take diazepam 5mg in the morning which stops the pain coming to such an intensity . Before the diazepam the pain once made me wretch it was so intense !!! I've really rambled on here so thanks so much for reading this . Nice to get it off my chest though and speak with someone who understands how I feel . You don't even know me and you're still prepared to offer such kind words and advice . Thankyou again
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