Mom with CBD declining

[Ruthcolene]

My mom was diagnosed with CBD 2 years ago. Her neurologist was shocked by her slow presentation of worsened symptoms. That all changed 2 months ago. She managed just fine with a walker for the past year but is now confined to a wheelchair. Her left foot drags too badly to walk safely and has fallen too many times. Are there "stages" to this disease? She still speaks clearly and only has minor short term memory issues. Long term memory is intact. Clarity of thought is still pretty good although she has to really search her mind often for the right words. She now requires assistance to eat but still swallows fine. She does have a perisitant cough that she can't seem to shake (about 2 months). Left hand is virtually useless. The stiffness, limited reach, and jerky movements that she experienced in the beginning with her left arm are now presenting with her right.

[Hidden]

I think “stages” are onset, middle and end. No two people seem to follow the same course. She sounds like she is doing well enough for maybe being in the middle stage.

My guess is Larry is in the middle stage. He’s also doing well enough. How long.? No one knows.

[kenh1]

You are at a similar stage where we were at 3years ago.

If you follow the posts on this site you will get a good idea of what the future holds. Don't worry, at every stage there is help at hand.

[cameoboy11]

I have have been diagnosed with CBD and the OT put some rails (frame ) around .the toilet which really helps. Love Jò x

[cameoboy11]

Everyone is different

Hope you're ok Jo x

[honjen43]

As Jeff says, it is all stages and no-one follows the same route.

I found with my husband that when the downhill trend went faster, then we were nearing the end.

That said, his cognitive ability was much less than you describe and he had a sudden deterioration of back muscles that meant I was unable to manage him by myself at home. It was all downhill from there!

I hope your mom retains cognitive ability for a while longer. Work with that to get other means of contact with her should her speech go - being able to still communicate then will be crucial to her wellbeing.

I hope the situation stabilises so that you can enjoy each others' company for a while longer.

Hugs

Jen xxx

[raincitygirl]

Hi Ruthcolene,

My husband has CBD and I believe he's in his 5th year. He has very little speech and his cognition is very slowly but steadily declining. His mobility is also declining, but he can still get himself (very shakily) up from a chair or couch, and can shuffle a short distance without a walker. We use a rollator for short outside walks and a zimmer-type frame walker for indoors. He eats very well and although has increased the coughing, he still has no swallowing problems. He is 79.

This is not exactly like anyone else on the site with CBD! Perhaps all the same symptoms, but they are arriving and declining at very different rates from those of other sufferers: including those who are exactly the same age! Everyone seems to have their own path, and personally, I don't think the "4 stages" that you may see written about PSP applies to him. Some of his symptoms match the "4th stage" and some still match what is listed for the "1st stage".

I've been noticing the longevity of some of our member-CBD sufferers, and it appears (based on family/caregiver reporting) to be everywhere from 3 - 11 years with a majority somewhere in the 7-8 year range. The 11 year patient is, as far as I know, still with us as the family member has occasionally chimed in and has not reported a sad loss

Best wishes to you as you care for your mom: no doubt, things will move faster now, but fortunately she has you to guide her through.

And you have us XXX

Anne G,

[Jdjdjd]

Hello, I have just read Anne’s post, and thought I’d chip in, as my husband Ian was diagnosed around 2008, but had the symptoms for some time before, we used a standing hoist for a long time, which was provided by the OT department, but have now moved to a bungalow and have a full ceiling hoist for getting Ian in and out of bed to his chair, and we use the wheelchair for going out, our experience is a very gradual decline, he can speak, but not sentences, just answers questions or ask me something, but he has full capacity and is interested in current affairs , when I contacted the helpline a few years ago, they explained that if I asked Ian a question, it was like I was speaking French, so he had to work out what I was saying before answering, that helped a lot, I have to feed Ian and I have a carer comes to help with his personal care

I would keep a watch on the coughing, as it could be aspiration, we are under the SALT team who are very knowledgeable on the problems associated with CBD, we also have a dietician who helps Ashe has lost a lot of weight,

Ian is now 75, and we are more accepting of the lot we have, yesterday we had a lovely day out at a local national trust

I hope you’re in the UK , as the help is crucial to us all

Keep in touch and try and find a local support group near you, they are usually listed in the PSP Matters, or on the website

Good luck

Janet

[raincitygirl in reply to Jdjdjd]

Yes Janet, you are one of the longest-lived I've heard of: 10 yrs since dx and symptoms a few yrs before that? 12 yrs? ..and still getting out to enjoy a view now and then and hopefully a few good friends who get it...

I'd say Ian's a leader here! 👍

Hugs, XXX

Anne G.

[LuisRodicioRodicio]

Hi Ruthcolene!

If physicians agree that there is suspicion of a Parkinson-like neurological disease (PSP-RS, PSP-CBD, PSP-P etc.), then I suggest to start an intensive and systematic exercise program including walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction. (Bearing in mind that Parkinsonian patients become significantly more fatigued (parallel to disease progression) for the same activities than those not sick, then they require more frequent rest periods.)

•Exercise 6 days a week: passive in bed (move all major muscles) and active (helped by 1 or 2 people). At least go up and down 50 steps (odd days), walk 200-300 meters (even days). Speech therapy exercises and exercises of mouth and ocular muscles. Then she needs to rest at least 30 minutes.

•We have seen that laughter, stimulation with an electric toothbrush of the muscles around the mouth (inside and outside) and a good hydration (moisturizers for skin and liquids by mouth) help to maintain the face muscles in good shape.

•In general it is important to encourage the patient to do things on their own. It is good that everything the patient can do by their own means, they should do it, even if it takes more time. With some help if necessary.

•Without any scientific basis, only through observation of a few neurological diseases like PSP, I have the impression that a specific program of intense gymnastics can slow down the disease progression in a significant way and is more effective the earlier the disease is detected. In the HealthUnlocked chat I have found many references that support this observation.

•Persistent cough. Use the syrup recommended by the physician. To avoid in the diet: coffee, carbonated beverages, chocolate, orange or grapefruit juice, helps.

Hug.

Luis

[wear1947]

Hi Ruth,

I suggest to follow Luis tips, adapted to the individual reaction of the pacient.

Warm hugs

Elena