Mom has CBD

[Jlbpreston]

Hi everyone,

I am new to this group and to learning about this awful disease. My 74 year old mom in Naples, Florida was just diagnosed with CBD the week before Christmas at Mayo in jacksonville. My dad is an amazing caregiver and we have found her other aides as well, however we fear for what is to come and the unknown. My mom who was the most active, vibrant, on the go mom, is being beaten down by this disease. Keeping her going is proving more and more difficult and fatigue is an enemy among others. Would love your support and any out of the box suggestions as we care for her and help her find peace.

Thank you and happy new year to all of you. Thank you in advance for your support. I pray for all of you and look forwarding to having a community.

Jennifer Preston

[easterncedar]

Welcome, Jennifer, although sorry for your family's trouble. I wish I had any suggestions for dealing with the increased difficulty and fatigue; it's unlikely to get better. I can only recommend being as cheerful as you can be and keeping as much engagement and mobility as you can manage - PT may be of use for a time and may help with transfers and such as the need develops. Good luck and hang on, EC

[Jlbpreston in reply to easterncedar]

Thank you so much for your support.

[pzagy]

Welcome to our group. I joined a month ago after stumbling upon the group in search of answers for my mother in law who has CBD. She was diagnosed this past year, she has been wheelchair bound for a year now. Don't know how everyone missed it she was going to specialists for 2 years.

Fatugue, well my mother in law basically laid on the couch for the better part of last year, only to get up to go the the bathroom, which she used to walk to with the walker and someone beside her. Now she is not able to walk, or should I say shuffle from her chair to the toilet with great assistance.

I think her first symptom was when she complained about having something in her throught causing her to not be able to speak for long periods of time. Then came falls, over 3 years of un explained falls. After numerous specialist visits with no answers I finally changed her GP who noticed her shuffling gait, the ball started rolling then she broke her ankle with another fall. Well, that stopped everything for 4 months. When we finally got her home after re-hab she needed 24 hour care. She lived alone so we hired carers which lived with her. Then started the anxiety, 24 hour non stop anxiety.

We finally got an appointment with a movement specialist who diagnosed her first with MSA then after 3 months we got the CBD diagnosi

Is your mom mobile? If so please keep her moving it is very important to do that. Get a stationary bike, the ones with the back rest, trust me it is the best one for her.

Does she have anxiety? If so keep it in check, that will ravage her unless it is taken care of.

If you are keeping her at home please look into all te equipment you will need, bathrooms are the first on the list. Make sure it is well equipt you dont want falls in there.

Ths may be a bit overwhellming, I am not the kind of person to sugar coat things, I want reality and with CBD reality kicks you in the ass.

There are not too many people with CBD on this site, but PSP is simular to CBD I do find that CBDcomes with a few extra gifts however.

Please keep in touch, I am sorry CBD is in your life

Paola

[Jlbpreston in reply to pzagy]

Thank you - this was very helpful. We are pushing her to stay as mobile as possible but it is such a "chore" for her some days. We keep playing with medicines. Yesterday was a good day with the changes the doctor suggested. She takes adamantine - not sure that is the best one for her, however. Do you have success with another drug? We bought her CBD help oil yesterday and I am anxious to see how that works. The holistic person we met with here in Naples Florida also suggested magnesium L- threonate which is supposed to help with brain function. We have been making a number of changes in the house with hand rails, shower, toilet seat... if you have other suggestions that have worked, let me know. We also bought the mattressss that go up and down which she loves and a special chair that reclines but also helps her get out of her chair.

Thank you again!!

[pzagy in reply to Jlbpreston]

Seems like you have it under control, I would be curious to know how the magnesium L-threonate and hemp oil work for your mom.

Getting things ready in the home will help avoid falls and make things easier for you all. I cannot stress enough the importance of movement, try having someone come in for physio, sometimes somone outside of the family will get her going more that you all can.

I have read that Adamantine is being used in Europe for PD is she taking this for movement??? In talking to the movement specialist in Toronto, there really are no drugs for CBD, my mother in law was taking a slew of things for movement but taken off them within 2 months as they did nothing.

Does she have anxiety? That was the biggest challenge for my mother in law.

Hugs

Paola

[Hidden]

Jennifer,

I don't post much to this forum but I do read it often. It helps when I feel down and scared. After reading your post I wanted to share some of my experiences. My mom just turned 79 this month.

5 years ago

She was diagnosed with ataxia when she started walking with a weird gait and loosing her balance. She began using a cane but it was more for piece of mind because it really didn't help with the the falls.

4 years ago

After a horrible fall and loss of conscienceness I moved her from OKC to Dallas to live with me. Things were ok for a while but she could only walk around the house holding on to something at all times so we got her a walker.

We went to a new physician. After a battery of tests we were referred to a neurologist. After another battery of tests there we were referred to a movement disorder specialist. That is when she was diagnosed with MSA.

3 years ago

Her falling started again, she was loosing her ability to write and her sleep pattern was pretty screwed up. She started physical, occupational and speech therapy to help with daily tasks. After the first one left her practice, we went to second movement disorder specialist and that's when my mom was diagnosed with CBD. After what seemed like daily falls resulting in cuts, bruises and multiple trips to the ER it was easy to see she could not be left alone and we agreed to assisted living. That's also when we brought in a wheelchair.

1 year ago

The assisted living facility recommended more one on one care to keep her safe as she was continually trying to get out of her wheelchair to do things on her own and the falls started up again. She also started having other odd behaviors such lying, hiding things, hallucinating and accusing people of things!

Today

Now my mom is now in a residential care home with only one other patient. She is showing early signs of dementia and is not wanting to feed herself. Hospice is assisting with long term palliative care. That has been a great help.

I am sorry for such a long story. My point is this disease moves quickly. I Have found it helpful to keep a journal of all the changes as they happen and talk to your parents NOW about the future. Make sure legal matters, wills and directives are in place. I'm sorry to say, it's going to be a rough emotional ride but there is lots of support out there, don't be afraid or ashamed to ask for it.

Best of luck and prayers are with you.

Yvette

[pzagy in reply to Hidden]

Wow, that is a carbon copy of my mother in law with the same timeline except for the feeding. She is starting to lie but I don't think she means to it is just her reality.

She doen't try to get out of her chair however. At night the nurses bring her bed right down to the ground and place mats all around her as she sometimes tries to turn using her good side and falls out of bed.

I am curious, did your mom have difficulty talking initially? Or was it just the falls that concerned you all?

You are right about talking to your parents or loved ones now, making sure that everything is discussed both medically and financially. We did this all when my father in law died, he actually signed is own DNR and it saved us from having to make the call. My mother in law does not want to face reality, she is scared.

Thanks for sharing your moms story, we are all in this together

Paola

[Hidden in reply to pzagy]

Paola,

Yes, I totally left out the part about her talking. At first she couldn't find the right word. Then she started using the wrong words. Over time it got worse. She says yes to everything. You ask her if her hair is brown she says yes. You ask her if her hair is geeen she says yes. Slowly she has talked less and less. Now she doesn't really talk at all. She seems to understand everything but when she tries to talk she gets the first word or two out with a lot of repeating. Then it's as if she forgot what she was going to say and never finishes. She gets very easily distracted.

I tried teaching her hand signals but I think we started to late. The earlier the better just for practice and to teach the brain a new way to communicate bypassing the parts that don't work anymore.

Thanks for the question because I totally left that part out of my original post.

Yvette

[Jlbpreston in reply to Hidden]

Thank you for all these details and timeline. I so appreciate it and found it so helpful as we prepare for the unknown. Thank you for sharing.