Me

[Mixee]

I have been diagnosed with CBD in February 2021. It has taken 2 years for diagnosis just wondered how fast it progresses. I can still walk and do some chores in the house. What do I need to know!! Thanks for any information.

[honjen43]

Hi Mixee, Welcome to this site!You have already made the best move there is in joining this support group. Here, you will find heaps of support, understanding and knowledge of CBD.

Although there is no cure as yet, it does not have to be the end of enjoyment of life! Make a list of what you want to achieve and start doing them. Hopefully, soon that can include travel.

Get all your necessary paperwork done while you are able, eg. will, power of attorney, care options, end of life choice, and discuss with family and friends.

When you are ready to know, get hold of the PSPA guide on CBD for doctors, and for patients and carers. These will help your doctor, your family and you understand how you will be affected. It will help you all to understand how these changes may affect your ability to communicate, move, etc, and that you are still YOU inside.

Look for avenues of help that you may need in the future, carers and other help that will keep life on track for you. Plan and prepare if you can how you will manage at home, with shower and wheelchair facilities before they begin to seriously affect you.

Keep active for as long as you can, however you can - physio, walking aids to keep you safe; keep your muscles active, and practise how to balance safely so as to avoid falls.

Enjoy life and be happy! Find humour in everything! It will help all your family through this!

Read other posts, and learn about their past journey. You can learn a great deal, and there are many answers to the questions you will have, and solutions documented to the difficulties you may face.

Your journey will not be the same as anyone else's.

Above all, don't give up! Be strong! And do as much as you can while you can - however long that may be!

Big hug!

Jen xxx

[Mixee in reply to honjen43]

Thank you for the information it was greatly appreciated.

[daddyt in reply to Mixee]

As Jen said, 'you're in good hands here.' She has given you great advice for the groundwork you need to do. Funny is good, you'll need to see the humour in things - especially on this journey you are about to embark on.

Tim

[Mariawatters]

Hi Mixee . So sorry you got this diagnosis . I was diagnosed with CBD 5 years ago and had it probably for 3 years before that ! I’m 58 years old . I’m still on my feet and work full time .... I tire easily but take a lot medication which I’m happy to share with you ... the details not the medication lol .... I certainly can’t do all I use to but fight everyday . I do yoga and eat a very healthy diet . I don’t want to bore you with all about me but I’m happy to answer any questions you have .... stay strong !!

[Mixee in reply to Mariawatters]

Hi Mariawatters so glad you wrote to me it as given me some positivity about things. I’m 68 it’s been 2 yrs before they diagnosed me. It has basically affected my left sided and of course I’m left handed!! My strength has been sucked out on my left side. I walk the mall and go into the gym. I have always been a busy person don’t sit around much. My legs feel like rubber sometimes when I walk. I am retired I’m trying not to think about it but it’s hard. Keep in touch thanks

[Mariawatters in reply to Mixee]

Hi Mixee . It takes a while for the news of such a diagnosis to sink in . The trouble I had was no one I knew had ever heard of CBD and therefore I couldn’t talk to anyone about how I was feeling . I only discovered the PSP association a few weeks ago and it’s been fantastic to chat to people who know what I’m talking about ......It was a lonely 5 years .I was also a busy person who never sat down...... I ran marathons , built a business which I put in 12 hour days , I have 2 sons and 3 grandchildren who keep me on my toes. As there is so little known about the disease and hard to find information my children and family aren’t aware how serious it is. I plan to keep it that way until I can’t . I don’t do the 12 hour days anymore, although it took me a while to accept I couldn’t do it !... I love mornings, so still get up early but allow myself to sit down at 3 or 4pm and chill with a book or watch tv which I never did before . I still clean, cook and garden but again all quite limited now as I don’t have great mobility in my left hand but I’m lucky as I’m right handed so I feel for you there ! My left leg feels very heavy and I feel I have a weight tied to it . I have a lot of pain in my left foot now also and it’s starting to turn in but I’m doing all I can, while I can 💪

Medication.....I’m on sinemet as I was first diagnosed with Parkinson’s 🤪clonazepam for the restless limbs......Pregabalin for nerve pain and amitriptyline which was the first medication I was on while waiting for diagnosis and it helped me a lot.

I live in N. Ireland and we have only 2 Parkinson’s consultants so I don’t see mine very often . I find yoga was a real life saver as I couldn’t lift my left arm up past my waist without severe pain but with the help of yoga the pain has gone away and greater mobility has returned

The first thing I did when I was diagnosed was book a holiday and have enjoyed quite a few until COVID hit . I have still enjoyed little day trips around my own beautiful N. Ireland and climbed a few mountains . I agree with everyone else on this site that you have to do all you want to do now while you can ...I step over the pile of ironing now and go on a picnic or a walk . I have been so so lucky my deterioration has been slow . I try to remain positive and not dwell to much on the future and how my health will be but instead I plan trips and nights out to the theatre ( I’ve hardly ever been ) when we are allowed out again 🙏

I hope you remain well and enjoy your life with all you love for a long time still .Sending you lots of hugs and love x

[Mixee in reply to Mariawatters]

Thank you so much for your message you are an inspiration. I live in the United States in Ohio it’s winter here now so there’s not that much outside activity. That’s why I walk at the mall. I’m still doing house work nothing like I use to and cooking nothing real fancy. But I really don’t want to do any of it anymore. I’m on Carbidopa/Levodopa it’s a Parkinson’s medicine also it’s supposed to help my muscles from being so stiff. Well take care , talk soon hugs and xxxooo

[Mariawatters in reply to Mixee]

There are days I don’t have the energy to get dressed and if I achieve that plus slap on a bit of makeup that’s all I do . I use to beat myself up about it but rest days mean better days ... I have dreadful anxiety also which I hate because I loved life and was always so happy . I try and not dwell too much on how things might go cus it would send you mad ... I hope your having a reasonable day today xxx

[Mixee in reply to Mariawatters]

I’m also on an antidepressant called Zoloft

[timbowPSP]

Hello Mixee,Good to 'meet' you, and interested in ur name! .... when myxomatosis swept the country about 65 years ago we kept seeing 'mixee bunnies' all over the place.

Back to this damn PSP .... you sound really positive, so keep that up. I am near 79, diag 2 yrs ago by my (smart) doc, and am an active engaged sort of person and a Bowen therapist - now retiring. After a confirmatory very negative diagnosis from the top man I immediately chose cranial osteo therapy and more, Pilates for targeted exercise, Homeopathy, and specific diet. The got paperwork all done, asked Doc for disabled driving test, and joined the PSP research project in London. 2nd MRI after one year showed 'no gross change', and am due for another very soon.

I have written up a rolling 3-page 'Update' on my journey so far, and happy to send to ur email address, if you like to provide that. Same for anyone else too. If not, I can put it all here - but a bit bulky!

Good to read ur post, and happy to keep in contact.

Go well, and keep that positivity! Hugs, elbows, and noses ... Timbow x

[Indiana-Girl]

Good morning, Mixee!I am so sad to hear of your diagnosis. My husband also has CBD and it took over 2 years and multiple tests and doctors before he was finally diagnosed with this insidious disease. In less than 2 years he is now wheel chair bound and while he can still feed himself, that is about all he can do by himself. However, each victim of this disease is different and not everyone experiences every symptom. I would tell you to do everything you want to do while you can. Take walks and enjoy the sunshine. Read books, go to movies, go out to eat. All of these things will slowly (or not so slowly) be taken away from you. Educate yourself about this disease,how it manifests itself and what to expect. Above all, take joy in each day with your loved ones. Even as times get difficult, and they will, there is always some joy to be found. Put your trust in the Lord. I know I could not get through the journey without His guidance and reassurance. This site is a wonderful place to cry, to vent, to get reassurance and to be loved. I hate that you need to be here but am thankful this community is here for you. If you want my email, message me and I will send it to you. As long as you have breath, you have a purpose!

[Mixee in reply to Indiana-Girl]

Hi Indiana-girl, thank you for your beautiful letter. I live in Ohio so we are neighbors. Thank you for all your information it is very helpful. Hope to hear from you soon.

[Aprilfool20]

I was diagnosed with CBD June 2017 probably 3yers before.I first knew something was wrong when playing guitar,I couldn’t move my left fingers properly to hit the chords.Then I dragged my left foot when line dancing. However, last September my consultant said he thought it might be MS A instead,just as bad but even rarer,because it was progressing fast and I was having dizzy spells and waterworks problems. I make myself walk with my rollator,but shake so much ,I can do nothing else. Housework is beyond me as is cooking, cleaning .Getting out and about is a struggle, after having had a bad fall and fractured my spine. I cannot work,gave up my job the year I was diagnosed and hate my life . So, do all you can while you can. To me it was a life I can no longer take part in .Lockdown for me will not end anytime. Luckily I have carer coming in and my husband does all the practicalities. The loss of control is the worst,and knowing what is happening to me scares the hell out of me ,but nothing I can do except live with it. Take care and hope you get to do all the things you want.Jane

[Mixee in reply to Aprilfool20]

Thank you for your honesty it really is helpful. That’s the scary part not knowing how much time you have to get things done. So I’m going to try to get things in order and then go about my life. Wish me luck!

[Marilyn_cbd12]

Mixee, welcome to the site. Those who have already replied have given you some good advice. I would just like to add my appreciation for this site, with so much practical and personal support. One another thing-- I found that I became my husband's advocate during his "CBD journey." There may be times when you have to prove leadership to the medical professionals...Marilyn

[Mixee in reply to Marilyn_cbd12]

Thank you

[Drjazz]

I was diagnosed with CBD two years ago and started having trouble walking two years before that. At first it was only my left leg but now it has spread to other parts of my body. I can still do most of the things I used to do, except sports like caving and skiing. I walk with a walking stick if I have to walk very far.

My best advice is to to live in the present as much as possible. Keep up your relationships. Get out and do the things that you can do safely. Walk every day if you can.

Don't worry about what's going to happen next with your disease. Just accept the things you cannot change.

[Mixee in reply to Drjazz]

Hi Drjazz, thank you for responding I really appreciate it. It took 2 years to get a diagnosis. It started with my left hand and it has basically affected my left side of my body and I was left handed. So yes I try to keep busy every day and walk or go to the gym and ride a bike. I just need to get my mind off of the diagnosis. Again thank you talk again soon.

[Tindb]

Sorry to read about your diagnosis.

We are from Belgium and my wife was diagnosed for CBD beginning 2017. She was teacher at age 59 when it started with a tremor in her right hand, and being investigated for it during 1 week in hospital it turned out to be cbd. This meant that we had time to do a lot of things on our bucketlist such as vacations, enjoying life, camping, etc. Until now is has been hard to deal mentally with this proces of degeneration. The best to deal was to live by the day and don't think about the future, but as caretaker still important to keep in mind how to get the best care for her in time (such as shower without threshold, therapy, house adaptions, etc. ) In the beginning she experiened difficulty with stairs, speach in a later stage, walking and cognitive behaviour and now transfers with aid of weelchair. During time she has been mentally fit, understands everything but has difficulty to express herself. This is very emotial when she realizes this, but after a while she forget this setback, give a smile and be more happy . These differences are seen more often, so we try to keep her comfortable as much as possible, and get that smile on her face every day. There's no cure for cbd yet, so that's at least what we as family can do since there's no alternative choice.

Until now, as caretaker I can say that we manage, but it's a challenge since the situation changes relatively fast. For every issue that occured on the way, we didn't fear but pursued until we had a solution. It keeps one busy and gives satisfaction.

[Mixee in reply to Tindb]

Hi thank you for your information on your wife I am so sorry about what you both are going through. I’m hoping to have two good years to get things done trying to stay positive. Thank you again and God bless