Just joined this morning CBS psp

[Rangers55champions]

Hi I'm maxwell from east kilbride I have both psp and cbd I have alot of trouble with the condition

[LuisRodicioRodicio]

Hi Rangers55champions!

I'm sorry PSP/CBD/ etc. has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests theyself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

I am not a phisicyan.

During the 8,5 years in which we ere living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family and if the notes-document with our experiences and our informations are of someone´s interest, do not hesitate to let me know to send it by the private mail of this chat.

Hug and luck.

Luis

[Cappy11 in reply to LuisRodicioRodicio]

Hi Luis,

I have someone affected by PSP-CBD in my family so I have been on this forum for a few months now. I often see your detailed helpful posts on a lot of topics. I would be very interested in seeing your notes so that we can be a little more prepared for what's to come.

Maxwell,

This is a great forum to get answers about how to manage your condition. But it's also a very supportive community so even if you don't have anything specific to ask, you'll get some friendly responses on just about anything you feel like talking about

[Mariawatters]

Hi Rangers55 . I have had CBD for 5 lonely years and then only discovered this site 2 months ago . I have had so much help and advise from the amazing people on here . You have at least started a journey of chatting and sharing with people who know how you feel . I want to say welcome aboard but I wish I was welcoming you on a cruise liner or tropical island but I’m sure you know what I mean 😍

[Chelle1981uk in reply to Mariawatters]

Hi Maria so sorry to hear about your condition. My mum also has CBD and it’s awful watching her go from her usual talkative self to not being able to talk as well as she used to. She cannot use her right arm and hand at all now. Five years in, are you able to please share if you are still able to talk with your family/friends? How is your mobility? Sorry to ask but I’m just trying to see how people with CBD are getting on after they’ve been diagnosed for more than a few years. Thank you and sending lots of love your way x

[Mariawatters in reply to Chelle1981uk]

Hi Chelle . I’m happy to answer any questions you have. I was diagnosed about 5 years ago with symptoms around 2 to 3 years before that . I’m extremely lucky as most days I feel not too bad.

I still have full mobility although drag my left leg a bit as it feels heavy and my foot which is now turning in hurts a lot . I can still run ,in fact I can run better than I can walk . My left hand is very stiff and out of shape but I can still do most things , although some with difficulty like peeling a potatoe and tying laces etc ... I was extremely active before ... I loved running , climbing etc but I work at 50% now ... I am extremely clumsy which frustrates the life out of me . A simply task like cooking , cleaning can exhaust me due to the extreme effort of just trying to plan it all . Everything takes me twice as long . I manage to work full time also in the retail sector .. I was a buyer for a hair and beauty business but have been off with covid . I can’t imagine doing the job like I use to because like your mum my speech is starting to be affected . I slur and stammer when I’m tired ( which is all the time ) this makes me nervous so I tend to rush to get to the end of the sentence which of course just comes out in one big load of nonsense . ...... I can hide this from most people but my husband who obviously sees me struggle can’t understand why I don’t just give up and let him do everything. That day will come but I’ll fight hard until I can’t anymore..... I try to find humour in it but to be honest there are days I’m devastated . I love life and people and wanted to live until I was 100 . . There are devices out there to speak for your mum I think they were mentioned in this seasons magazine . I received my copy today . There are zoom meetings also which I found amazing where you and your mum can talk to others in your situation ... I’m in N. Ireland . I can send you a list of meds I’m on as I think that’s what’s kept me going ..... call your GP and get your mum referred to a speech and language clinic , I’m waiting on that myself . Can she speak at all or does she just displace words ? Love to you all and may God give you strength xx

[Chelle1981uk in reply to Mariawatters]

Hi Maria thank you so much for your reply, it is certainly good to hear that you’re doing so well despite the condition. My mum cannot cook or clean at all now - her right hand is her dominant hand and not being able to use that anymore frustrates her so much. She just wishes it would work again. She can walk for a little while but always has to have someone to hang onto now, which she never used to. She is still managing to speak but like you, gets tired very easily and sometimes she just can’t get the words out and again, gets annoyed and frustrated because she can’t speak them as easily as she used to. My parents took part in the last zoom meeting but unfortunately I was at work that day. I hope they also get a copy of the magazine this month as that, I’m sure, will be helpful. It is sad to hear how active you once were, running etc(!), and how much this disease has affected you. I loved going walking with my mum and miss that so much now. She did have a few sessions with the speech and language therapist in the beginning but after about five months they stopped for some reason. I’ve decided to go to the next neurologist appointment as I have questions of my own to ask him, together with why he seems to be doing very little to help my mum. We are based in Gateshead, Tyne and Wear, it would be amazing if you could let me know what meds you’re on especially if you think they’re helping you. My mum is taking co-careldopa but believes it isn’t helping at all. Thank you again for replying and I really hope that things get better, not worse, for yourself and my mum xx

[Mariawatters in reply to Chelle1981uk]

Good morning. That is so sad that’s it’s your mums right hand ! Once again I’m lucky that it’s the left side of my body thats affected and I’m right handed .

The first medication I was on was Amitriptyline 25 Mg .My GP prescribed this for me straight away while he was waiting for me to be diagnosed as I was basically on my hands a knees I couldn’t function at all. It was amazing and made me feel like me again, although some people I know say it didn’t work for them and made them feel worse but they had other things wrong for eg fibromyalgia not CBD so my thinking is it works for the CBD brain all I know is i can’t function without it

I take 25mg of sinemet 5 times a day it’s Levodopa mostly used in Parkinson’s . I was on 37.5 mg 5 times a day but I saw my consultant for the first time in 2 years last Friday and he suggested dropping down to 25 mg to see would it help with the tiredness , I haven’t felt good since doing that and I’m going to give it until Saturday and if I still feel bad I’ll increase it again so I’ll let you know of that little experiment 🤞 apparently Levodopa can cause tiredness ??

I’m also on Pregabalin for nerve pain and to help with the anxiety I feel I take 50 mg in the morning and 50 mg at night once again I heard

dreadful stories about this and came of it about two years ago but again I felt awful and went back on it again (you have to wean yourself off and on these drugs )

I’m also on clonazepam 500 mg x 2 at night to help with the dead arm and leg and the restless feeling I have at night.

I hate taking medication which is why I’ve danced around with it but I accept now I can’t do without it 🤷‍♀️

I go to yoga or I use to and it helped so so much with the stiffness and balance . Classes are off now of course due to the pandemic but I found one on utube, there are lots on there for beginners which I still class myself as so I’ve been trying those out

I bought a nutribullet also and make a drink everyday with the kale , spinach and beetroot and I bought all the Superfoods for eg Maca powder ,Chai seeds etc on Amazin . I’m no expert in this but I think this helps with energy also . It’s a good way of getting all the good stuff in without having the fuss of trying to cook

You will have also find most of us on this site find our neurologist

a bit unhelpful , mine can’t get me out the door fast enough lol. I had to ask for Botox injections for my foot . Some lovely person on this site recommended them for stiffness so he has agree to arrange this for me so again I’ll post about that when it happens

Keep up the good work in looking after your mum , you are amazing . Support and understanding from friends and family is so so important. Any other questions you have please please ask . I had nobody to talk to for 5 years so it helps me to talk also

Sending you lots of hugs from Belfast x

[Chelle1981uk in reply to Mariawatters]

Good morning Maria, once again thank you for your quick reply! Your message has been so informative and I’m going to write down those medications and think I’ll speak to my mum’s GP to see what they say. Please let me know if the Botox injections work. I saw a post on here about that too and am tempted to ask the “unhelpful” neurologist about it - my dad doesn’t like him because he seems to just ask the same questions and they’re in and out within ten minutes! I have also heard yoga is good - my mum used to attend chair-robics before the pandemic but her balance isn’t what it used to be so I’ll be surprised if she takes it up again when places reopen. I have been trying to do some exercises with her myself i.e. getting her to lift her legs together and then lifting one leg and holding it, moving them to the left and right etc. I am going to ask the neurologist why the physio stopped as well - it’s like she’s been left to her own devices with no input from professionals at all. I am so worried/scared that she will lose her speech that I’m also getting her to read out loud with me and we are doing word games like A is for alphabet, B is for Barcelona and so on! Anything to stop her speech from drying up. She’s only 72 and I feel like nowadays she’s so much older because of what’s happening to her body. I’m so sorry you have had no one to talk to about your condition for so long but I hope now that this group is helping you. And of course you’re welcome to keep in touch with me should you wish. I’ll certainly keep in touch with you and if anymore questions pop into my head I’ll be in touch 😁 thank you again and sending lots of love to you from cold Gateshead! Xx

[Mariawatters in reply to Chelle1981uk]

I dont know what it is about the neurologist. Mine leaves me sitting for 2 hours sometimes after my appointment then he gives me 10 mins also . He asks me to tap my index finger and thumb on my good hand and then on my bad hand and writes it down . I complain about the pain in my foot continually and describe how my big toe is slightly raised and sitting away from the other toes plus all my toes are bent over in a claw type manner and are rigid so bad that I can barely cut my toe nails .. he has never asked to look at the foot . My hand is like a claw also but he doesn’t seem interested. I was so excited to get the botox offer for my foot I forgot about my hand . I will certainly let you know how it all goes . One thing I will say about him he will give me any medication he can think of . I worried this was just to get rid of me as in he doesn’t know what to do with me .... but I think all the medication is what has kept me going this long so . Yes take that list to your GP as I wasn’t aware they could offer this medication I thought it was only the neurologist but my GP increased my pregabalin when I was going through a bad spell . I had a fab GP who pushed for all my MRI every time they couldn’t find anything . He believed me so much and insisted on seeing me every three weeks just to see how I was coping but he retired lol cheek of him . It’s important to get a good doctor because ones again I the middle of the pandemic I was feeling bad and called the doctor in desperation thinking he could do nothing and he was amazing . He chatted with me for ages and ensured me it would pass and he was right but just having that kind reassurance from the professionals means so so much ......

I admire all you do with your mum she is blessed to have you ... I think it’s important to keep the dead arm and leg moving some how to prevent losing the muscle . She is still a young woman at 72 so sending positive vibes from a very sunny Belfast 😎😎😎

[Chelle1981uk in reply to Mariawatters]

Hi! Next month will be the first time I meet my mum’s neurologist and I don’t hold out much hope of him helping! My mum’s right hand is also often scrunched up and she finds it difficult to uncurl her fingers - I wish there was something that could help her with that. I will definitely mention the Botox injections and also ask him why he hasn’t mentioned this before. Typically my mum doesn’t have just one doctor and during the pandemic when we ring it’s literally whoever is available or on call at that time so unless they throughly read through my mum’s notes or understand her condition I have a feeling they’ll say “you need to speak to her neurologist if you want to change her medication” 😫 we shall see! With regards to trying to help my mum fight this, I’m just trying my hardest to keep her active and to keep her speech going. She’s so down and sad and I know she can’t be bothered because she’s so frustrated but I have to keep trying. Glad to hear at least Belfast has been sunny today! 😉😁

[Mariawatters in reply to Chelle1981uk]

Oh same here with the doctor at the moment I was just lucky that day but now you take who,you get and no they have never read the notes and ask me what CBD is 😤 I have a son born with heart problems and it was the same there . I think they hid when they saw me coming but I was forever having to explain to them what surgery he had and when ...... all amazing people but yes I wish they would remember they may have hundred of patients but you only have one mum / son xxx

[Chelle1981uk in reply to Mariawatters]

I just wish they’d look at the notes before ringing you back! Very frustrating when they have no idea what you’re talking about! Sorry to hear about your son too; that must’ve been tough to deal with too. Life can be so cruel can’t it 😣xx

[Mariawatters in reply to Chelle1981uk]

My son is now 33 but he had a tough time of it .... I use to be terrified of the consultants and professors but not anymore lol,..... have a lovely Easter xxx🐣🐥🐤

[Richard33 in reply to Mariawatters]

Mariawatters, you are doing so well. You are an example to everybody with CbD to live such a full life. It definitely is vital to keep active and pushing yourself to slow down the disease. My wife Ruth who is now 61 is doing better than many - again always was active in life. Richard x

[Mariawatters in reply to Richard33]

I have always lived life in the fast lane . When I was diagnosed I was looking after my mum who has dreadful mental health issues , my sons was going through a divorce which broke my heart and I still had a mortgage to pay off . I had no choice but to push on . I love life and I love people and I also think I have been very lucky with my slow progression . We don’t know what tomorrow will bring so I thank god for every good day . This site has helped me so much just to be able to talk about the disease and I think it’s a good day if I can helpsomeone with a bit of my little knowledge . I hope your wife stays well for a long time ... Happy Easter 🐣🐥🐤

[AJK2001]

Hi MaxwellSorry to hear about your situation but very glad you have found this community. They are a very special bunch on here and they certainly helped me through my journey with my Mum's PSP. I hope you find it as useful as I did.

[timbowPSP]

Hi Maxwell .... pernicious conditions these, sorry to say. I am only PSP, diag in Oct 2018, and still fairly fit and well, thank the stars! It seemed there was little help out there, so I worked my way through all the options and wrote them down to help others on the journey. It is now three A4 pages.!

Happy to send it to you. Can either send it on this platform, quite bulky and space-taking - or maybe better by email as attachment, so if you'd like it emailed, pls send me ur address? Whichever!

Best wishes and keep smiling! Timbow