Sister just diagnosed with CBD

[Skye04]

I am new to this site and hope to obtain some information and possibly support as my sister (75yrs) has just been diagnosed with CBD...She started having falls (always backwards) 4 years ago and after seeing a Neurologist at that time she was diagnosed with 'Parkinsonism'.. Her falls were traumatic having resulted in a 'brain bleed' and a cracked clavicle and other symptoms became apparent quite quickly...After a second opinion from another Neurologist he diagnosed her with CBD just a month ago...Her left arm and hand are completely paralysed and her fingers are curled shut. She cannot walk on her own and her speech is very monotone and slow...I am her caregiver two afternoons a week while her husband works...We are her only two caregivers..she goes to our local 'Y' program twice a week for exercises and has a physiotherapist comes in twice a week to work with her and her husband is very good and working with her every day to exercise her limbs. Thank you for accepting me on this site..I want to learn all I can about this terrible disease so I can help my sister's journey forward.

[kenh1]

Welcome to the group, my wife was diagnosed with CBD in 2013 with similar symptoms as your sister. This site is a superb source for information. It is helpful if you say where you live as there are people from all over the world on this site. We are in the North West of the UK and get great support from our local NHS and hospice. The PSP association is also a great help and has local groups around the country were we can meet with others facing the same problems.

Best wishes and prayers. Ken.

[Skye04 in reply to kenh1]

Hi Ken...Thanks so much for your reply..I live in Ontario, Canada and have recently found a support group that meets once a month quite close to where we live..Having been born in Scotland I know the NHS and hospice give good support...We are just learning about support here for my sister...It seems you have to qualify and then they will determine what supports you will get free...but most extra help one needs here...you pay for...Thanks for answering me!

[Dadshelper]

Welcome to the site. Just ask any question/concern you have or use the search feature to top of page.

Dad was Dx with CBD in Jan 2016, showed symptoms probably around 2012. He passed away Sept 2018. I was his caregiver for about 3 years, last 10 months he was in a nursing home.

Ron

[Skye04 in reply to Dadshelper]

Thanks Ron for responding...sorry for the loss of your dad...I am so glad I found this site but it terrifies me what will be ahead for my sister..Thankfully I am only 15 minutes away from where they live and plan to be there every step of her journey..but it does scare me...at what point did your dad enter a nursing home if you don't mind me asking? My sister can't walk unaided and needs toileted every couple of hours...which I help out with as her husband still works two afternoons a week..She has a very positive attitude and we can still reminisce about our childhood..her speech is getting slower and she does have bouts of coughing...I notice a difference from week to week with her movements...

[enjoysalud]

My son had PSP. He was barely 55 years old when he died.

I think that is good and helpful that she goes to the Y twice a week for exercises (my son did that and it helped both his PSP and an for the fellowship). I think that is good that she has a physiotherapist coming in 2x a week.

Keeping all three of you in my prayers.

Los Angeles, CA, USA

[Skye04 in reply to enjoysalud]

Thanks so much...I appreciate this site enormously and I know as time passes I will use it more often... So sorry about your son...I can't imagine losing one of my three children..but my sister and I are so close I know this journey ahead will need a lot of courage which I know you must have to deal with your loss...you are also in my prayers!

[enjoysalud in reply to Skye04]

My son wanted to be kept at home. He was single/unmarried and lived about 10 minutes away from me. He died at his home on May 4, 2017. I hired a helper the last three months of his life. He was mis-dx with Parkinson's up until January of 2017. The hired caretaker was there Sunday night until Friday afternoon. I was there on the weekends and would pop in daily a couple of times a day for a couple of hours or more.

Since he died, the first 18 months after his death were focused on my loss, but then I started to realize the gift of him having been in my life was sooooooooooooo much greater than my missing him. I will always be GRATEFUL that he was MY son.

[demlac]

Sorry to hear about your Sis

My hubby was properly diagnosed with CBD in 2017, although symptoms came prob 2.5 years earlier he’s 47 now.

This disease treats everyone differently I’ve found he has not been able to talk for nearly 2 years and had a peg fitted in August 2017.. He had a fall in late November which resulted in a broken hip he’s been in hosp for 2months now in Rehab.. All I can say is hold on even when you think you know longer can muster the strength to do it, this disease is Cruel I hate it!!! But my love for him is eternal..

Take care...

[kenh1]

Thank you for your reply and we know you are in Canada, I was very much helped by Raincitygirl from Vancouver on this site her husband had CBD. I guessed you were from Scotland. One of the Nurses who attends to my wife used to work in the Shetland hospital. Good to know you have found a group, it is good to share.

[raincitygirl in reply to kenh1]

Thanks Ken :-). I'm still here & happy to help with any info I have. It's a good big family here..👍

Anne G.

[Hidden]

Good Morning Skye,

Welcome to this group of knowledgeable, caring, and compassionate people.

My mom searched for many years before she was finally told she had PSP. She & l both experienced the backward falls. They were the most frightening to me. Trying to catch someone can be dangers too, sometimes both individuals go down. Taking precautions such as a wheel chair, walker or a cane were our only solutions to the falls. However they are not full proof... if your sister falls often she may benifit from a helmet.

Drop in here as often as you like... you will always be welcomed! Sending gentle hugs... Granni B

[Skye04]

Thanks so much Granni B...what lovely caring people you all are!!

[AlliP]

My mum had PSP, she was ill for a long time , complained of feeling drunk , falling backwards , doctors said depression , PSP was finally diagnosed after I read an article on PSP in Daily Mail , her fingers also curled up , she had to have them removed 😞 . She also had issues with her eyes too . Horrible disease and very upsetting to watch , my mum was in s world of her own! Talk to professionals and get as much help as possible , consider a good quality CBD . X .

[Skye04]

Thanks AlliP appreciate your reply!

[raincitygirl]

Hello Skye & welcome to the tribe

My husband had CBD and although he passed last summer after ?5 years of the disease, he was able to maintain some mobility, a very little bit off speech and a good ability to eat right until the end. He lost cognitive function (speech, numeracy, spatial ability, complex problem solving) and got frustrated (of course!...) and apathetic, but was still "himself" - no heavy-duty dementia. He had a massive seizure in July and went instantly.

I tell you all this because, although the disease IS heartbreaking and unfair, and not what you ever planned for yourself or your loved one, not all journeys are horrible. We shared, and loved and had an increasingly smaller life as time went on - but we had a life.

I eventually applied for and got subsidized community health care aides (I'm in BC) who got him up, bathed, dressed and breakfast ed while I went to aquafit 4 days/week. That was a real sanity saver to have some hours away, keep some fitness up and know he wasn't neglected. Do encourage your B.I.L. to pursue this when the time is right. Physio was also very helpful. We had a bit of extended care plan to help with that, but not much. I submitted all receipts with our tax return too. I think you get a little there.

Best of luck and keep in touch!

XX. Anne G.

[Skye04]

Thank you so much Anne for your message which did give me hope even though the future is not bright...It is so good of you to still keep involved in this support group..So sorry about your husband ...You are describing all the issues my sister is dealing with....speech..spatial ability..some cognitive function..she is a very positive person and will always say "I am fine" with a smile...I treasure this time with her..we have always been very close (3 years apart)...my BIL is wonderful with her...he makes sure she does exercises every day and they still go out for lunches with friends and to the movies etc...So for now I can manage to get her from her chair to a wheel chair and into the car and sometimes I just take her shopping and we look at clothes etc (we were always great shoppers!)...I really appreciate being able to 'talk' to people on this site and learn everything I can to make what time she has left....as meaningful as possible! Thanks again Anne! and I will keep in touch!

[raincitygirl in reply to Skye04]

Thanks! You’re doing all the right stuff Skye

Hugs to you all XXX

Anne G.