To think this wasn’t all in his head?

[Harlowla]

I know nobody can diagnose anything but I just wondered if anyone had ever heard of anything like this before because I’m sure there must be an explanation somewhere.

Husband always lived life to the full right up until retirement and then he started to fall over a lot with no real explanation, he’d suddenly lose balance and fall.
Doctors could find no reason why but this continued and he would seem to find walking hard work until he just shuffled along very slowly with a stick.
Again doctors and hospital have no clue to why his legs apparently just don’t want to work.
In his words he knows what to do ie put one leg in front the other but he just can’t get his brain to get the coordination right and so his balance goes and over he falls.
Recently he has hardly been able to get out of the chair and only does for toilet breaks which I have to assist with to keep him stable.
Doctors have now concluded that he’s lost the use of his legs because he hasn’t walked for so long which while in theory yes he has but that doesn’t explain the cause only the affect.
Meanwhile we have no idea what’s wrong because nobody seems to be able to tell us anything and now I’m a full time caregiver to him and apart from the suggestion of it being psychological it doesn’t look like we’ll ever have any answers to what’s happening.

He now can’t balance to stand up anymore and when he falls he can’t get back up again so I have to get assistance from neighbours or call someone to pick him up but despite this his brain is still as sharp as ever but it’s just not getting messages to his legs it seems.

I just wondered if there was anybody anywhere that had experienced anything similar?

Has he not had an mri? Sounds like a man I clean for. Found damage to small blood vessels in the brain.
Didn't mention our ddog had vestibular disease and sounded exactly the same. Connected to hearing loss apparently which the gentleman has.. Doesn't wear his hearing aids mind.. His ds paid private as NHS wait was 17 months. He's 88 ffs . Cannot be waiting around. He used a frame at all times. Still as sharp as a tack.

Parkinson's affects bladder control as well. Also affects personality where sufferers become withdrawn, more insular and less interested in the outside world.

I would also suggest investigating Parkinsons.

This! Potentially he could be MTHFR and needs methylated B vitamins and to avoid any foods fortified with artificial foliate like bread and cereals.

Look up Ben Lynch for more information.

At least it’s a relatively simple thing to try.

Caring for your DH sounds very hard on you.

Assume they have ruled out cervical myelopathy? Wear and tear changes in the neck joints causing pressure on the spinal cord. Can be very gradual.

https://elht.nhs.uk/application/files/6917/6061/7763/Degenerative_Cervical_Myelopathy_DCM_warning_signs.pdf

My mum was similar and was eventually diagnosed with Progressive Supranuclear Palsy. It started like Parkinsons, but without a tremor.
It took a specialist neurologist at Sheffield Hallam to diagnose it.

@m030978 Can I ask if she is still with you? And if not, how long from diagnosis to losing her was it? My DM has been diagnosed with this, and is now rapidly going downhill quickly. She is very frail and falls constantly, can't swallow properly and squints with one eye and is becoming incontinent.

I don't feel her quality of life is very good, and if I'm honest I'm hoping she doesn't linger like this for donkey's years (she's currently 87 and was very fit and active before this illness).

The prognosis isn't good and specialist says she will probably need tube feeding at some point and she's adamant she won't have this. It all sounds really unpleasant. She's currently still at home and she and Dad won't accept outside help and he is 90.

Thats very tough on you both OP, I am sorry to hear you are going through this. I am thinking Parkinsons first - the diagnostic criteria are below:

https://www.ncbi.nlm.nih.gov/books/NBK379754/

Could also be MS or FND.
Less likely could be Huntingons Disease- symptoms are cognitive, psychiatric,mood issues followed by loss of muscle tone, rigidity in muscles, eye, speech and swallowing issues.

I think Parkinsons would fit more of the symptoms. It also includes depression, cognitive impairment and memory problems.

Symptoms include
Tremor - worse on one side, gets worse during mental tasks such as spelling words backwards
Rigidity in joint
Bradykinesia - movements getting slower and smaller eg handwriting gets smaller, smaller steps/shuffling, faster steps to avoid falling. difficulty turning around (takes lots of little steps), reduced facial movement and expressions.

Diagnosis is based on history and examination findings using the criteria linked above - its done by a specialist.

I am not a doctor, I just read medical books so I am only guessing and could be very wrong.

I hope you get some answers soon.

This sounds like a gentleman I know who had a form of parkinsonism which caused 'freezing gait'. Basically an inability to walk - it's like the messages from the brain are not getting to his legs. Has your DH been investigated for Parkinson's and related conditions?

Has he been assessed for MSA? A less common neurological condition. My dad had this and the stumbling and falling was the initial symptoms.

I was going to suggest MSA. My mum had this and falling was the first symptom, scans and tests were clear until the very end

Has he got a high arch and/or hammer toes?

Mum's still here, but deteriorating badly now, she's been unable to walk for about 1.5 years now and is just losing the ability to swallow. She still has capacity so is refusing tube feeding at the mo. She also has a permanent catheter.
Its only been about 2 years from diagnosis I think, she was diagnosed with Gluten ataxia first.
She's only 76, I keep thinking of all the years of planned retirement she's lost. My dad died last year at 78 from a heart attack. She was his carer for 20 odd years so it all went very pear-shaped in the last few years and they both ended up in the same (fabulous but expensive!) care home. They refused help until dad ended up in hospital with pneumonia and refused to leave her home alone... then they had no choice. Mum hasn't been home since. Dad did try, but failed to cope on his own so chose them the best care home he could find.

I moved my Grandma to the same care home last year, she's 99 tomorrow and is in better shape than her own daughter. Its really hard on her (and the rest of us) how fast she's going downhill.

((hugs)) to you 💗

Ben Lynch is a quack. Go down that rabbit hole with extreme caution.

B12 deficiency is absolutely worth investigating, but ignore all the MTHFR bollocks. It’s mostly used to con very sick people into buying expensive supplements, B12 injections with standard cofactors are all that’s needed for the vast majority of people.

I'm so sorry about your mum. My dad died from this last year.

The brain/legs disconnect and lack of quick diagnosis that OP described also made me wonder about PSP/CBD.

Has he had a full MRI on his head and neck? Spinal problems can cause sudden or gradual loss of mobility, particularly if the spinal cord is being compressed. As PP have said, if he hasn’t already, I’d recommend him seeing a neurologist.

Parkinson’s, CBD, brain tumour, MS, MND? A friends husband had CBD and it was brutal, does sound somewhat similar. Poor you, have you got some support mechanisms in place ?

My Nan had dementia and would literally forget how to walk.. in fact it was one of the first symptoms.

To me it sounds like Parkinson's.

Have they considered Normal Pressure Hydrocephalus (NPH)? It typically starts very much the way he's described his inability to walk and is often misdiagnosed or missed by doctors.

Doctors never know why anything happens. They just want to give you pills

My mum has parkinsons and it made me think of that.

I have MS and it does also sound like that could fit, it can be difficult to diagnose.

Is he under a neurologist?

It sounds like Parkinson’s to me as well, has this been investigated?

@m030978 Thanks for responding, it sounds horrid for you and your Mum. I suspect it won't be long before Mum needs catheter, and not sure how long she'll keep mobile. It's really difficult as she is determined to remain independent, but I think she'll need to be in a home soon. Dad can't (and isn't) really caring for her properly and there is a limit to what I can do.

@HowDoYouSolveAProblemLikeMyRear I'm sorry to hear about your Dad.

Hugs to all and to OP who is going through this sorry for the thread hijack.