Posted - 24 Jun 2011 10:06
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Hi, my name is Gill,
3 years ago my Mom was diagnosed with Huntingdon's Disease(HD).Consultants originally thought she had Parkinson's but when Mom's sister was diagnosed with HD they decided to test my Mom for that.She also has a brother with Parkinson's.It was a positive result although they said her count was low which is why it probably showed itself in later years(69).
Due to other health issues Mom was seeing a few other consultants.Recently one suggested that Mom was displaying more Parkinson's symptoms than HD,which is what we'd always though.She had a brain scan in March and was told the other day that she has Parkinson's aswell.has anyone ever heard of this before because the consultants haven't heard of any other cases in the West midlands.
She has recently started on some medication for the Parkinson's with little effect at the moment.How long does it normally take to show any results?
My Dad 74 this year is her only carer,they have been told that there house isn't suitable for having a downstairs bathroom/bedroom extension and they can't have a stair lift fitted because of health and safety issues with people with a neurological condition.My brother and sister work full tome,I don't drive and can't fit in 2 trains there and two trains back from Solihull to West Bromich in between the school run.
I've got them registered with Solihull council even though they own there home ,but because dad won't fill in the forms for her medical condition(form filling never been his forte and he won't let me/give me all the details to do it) they are way down the list.
When Mom went for her scan,Dad noticed on her notes that it saig either mis-diagnoses or missed diagnoses.
I've had councelling for HD as it can be hereditary and have 2 boys.I was told if I had the test it would 4-6 weeks to come back,Mom's took 6 months!!
Any advise would be greatly appreciated
Wow, what a saga. I've no relevant experience or knowledge I'm afraid, but I'm sure there must be someone on here who can help. Let's keep this on the back burner for a while and keep our fingers crossed.
i have never heard of anyone with both diseases how many consultants has your mum seen , is she on meds for the hd because if so then they might be working against the pd meds, which is she on, it might be worth a try to see another neurologist to get another opinion i live in cumbria but asked for a refferal to see a neurologist in newcastle which is a 2hr trip once a year but its worth it, his name is proffesor david burns he is the nicest man you could wish to meet he listens and thats aquality not many of the consultants have, its just a thought, when was your mum diagnosed with hd, and how was the diagnosis made are there blood tests and brain scans, for pd there is no blood test just physical examination and a scan,hope you can get some answers good luck sue.
Hi Gill, Pleased to meet you.
I have heard of Parkinsons and huntingdons because that is exactly what my mum has.
Her own mother had HD although very little was known about it when she died in 1977. My mums sister has since been diagnosed and is in residential care. My mum a very spritely and fit 67 year old began to show signs of internal tremor, frozen shoulder, back ache and general malaise. She is under the care of the neurological hospital London. An initial diagnosis of Parkinsonism was made. She was monitored for a year, after which she agreed to have the HD screening. She came back with a low count (48 i think) which although this means she has the Huntingtons gene, she will only develop mild symptoms later in life. This diagnosis obviously leaves myself and my brother wondering our future...but neither of us wish to have the HD test as we both have our families so we can make no positive changes. What will be will be. The consultant says that as her symptoms developed he was sure she had Parkinsons (a real cruel blow of nature). She resisted medication for 3 years but her mobility and hand tremor were beginning to affect her ability to carry out normal daily activities so reluctantly she gave in. She has been on medication for 2 years. a very low dose which is increased 6 monthly. Whilst her mobility and tremor seems to have improved dramatically her mood is in a steady decline. She has a mask like expression and seems to have lost her sense of humour.I can no longer share a joke, she seems to see the bad in everything. She has lost all enthusiasm for life and lacks self motivation. It is so sad to see. I see her twice weekly and evey 4 weeks we have a proper day out....but often as soon as we are out she wants to go home, and yet when she is home she wants to be out! When we go shopping she gets very disorientated and rarely buys anything as she cant make a decision. My mum is 72.
Does your mum share any of the same symptoms? I will check back to this link. :)