Cbd symptoms : Hi all, mum is suffering... - PSP Association

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Cbd symptoms

Codd_family
Codd_family

Hi all, mum is suffering from cbd, lots of symptoms progressing..ie, agitation, trouble getting to sleep, ocd, lots of pain in her arm and shoulder, loss of mobility and can’t sit up her own now, hoist has been ordered..I’m really worried about the choking and swallowing symptom which up to now has been ok, is this the next symptom to come ??? , she choked on a mini cheddar this morning 🙄, got so scared they are now banned ... hate seeing my mum suffer like this😢😢, anyone advise on 1st sign of the aspiration symptom starting, I need to be aware...love to you all fellow sufferers xx

10 Replies
oldestnewest

There has been quite a lot of posts on this subject on this site. When we went through the phase you are at we progressed through softened foods and then puréed foods. Asperation pneumonia is caused when the food gets into the lungs instead of the stomach. If I remember rightly she had flu like symptoms a high temperature and increased heart rate. The second time she had it her heart rate was going up and down like a yo yo and they kept changing the monitor because they thought it was faulty. After the second bout they put her on an ng tube feed, that was in 2016 and she hasn't had any feeding problems since.

Codd_family
Codd_family
in reply to kenh1

Thank you, very helpful information...I will look out for those symptoms, best of luck for your journey too xxx

kenh1
kenh1
in reply to Codd_family

Thank you, I also forget to say that they easily cleared up the pneumonia with antibiotics.

On the previous posts I also mentioned that Wiltshire farm foods do softened and puréed food.

Codd_family
Codd_family
in reply to kenh1

Oh good, very reassuring info, it’s my biggest fear as mums Carer, good to know that you still have your loved one with you still so long after this symptom appeared xx

kenh1
kenh1
in reply to Codd_family

No problem, the choking time was the hardest for me as a carer. Since they put her on the tube feed everything has been quite straightforward she gets all the nutrients she needs, I have just given her night time medicine and am having a glass of wine before I go to bed. When she was diagnosed with CBD in March 2013 we were told 5 years. We are way past that, now apparently people are given 8 years, life goes on regardless.

Keep calm and carry on caring.

Tippyleaf
Tippyleaf
in reply to kenh1

How distressing for you all. Has your mom had s Speech and Language (SALT) assessment they can assess swallowing and make dietary suggestions too.

Love Tippy

Yes I can imagine it was, glad you have resolved this. It is such a worry, enjoy the wine 🍷😀😀 x

Has a swallow study been done? My husband chokes and coughs all the time. His swallow test came back all was OK. He is coughing and choking due to saliva build up which thickens to phlegm.

Hello,

Frightening time for all of you who want to help her!

My CBD husband has had only limited problems swallowing. He had a swallowing study done this spring which showed some issues but not anything major. Two years ago, he did a month of almost daily "LSVT" therapy to strengthen the muscles involved in swallowing. Maybe that helped? I honestly don't know. LSVT involves working with a speech therapist and doing some noisy vocal exercises, if you are interested.

Thinking of you and your mother-

Marilyn

Hi, no tests have been done nor have we been offered any, we have had no outside care until recently as mum was diagnosed in may, but suffering for a few years...ot has just got involved lending us some equipment which helps, gp hardly wants to know, social services not bothered as mum has family helping.....shocking really xx

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