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Doctors cannot be expected to know about every disease. I know that, and the great majority of my patients know that. But that didn’t make me feel any better when my father’s health began to deteriorate, and I hadn’t even heard of the name of his condition.
He was living in France when his health began to go downhill about five years ago. Looking back he was suffering many different conditions but it took several years to piece it together. He had fainting episodes and hypotension, bladder problems and sleep disturbance. I was particularly aware of changes in his gait and that he had become very unsteady on his feet.
I know now that all these problems are features of MSA (multiple system atrophy) but this condition was simply not part of my vocabulary back then. MSA is a rare neurological disease with no known cause or cure that causes problems with balance, movement and functions such as bladder control.
My father finally got his diagnosis in 2010. I didn’t find out on a particular day, it was more a case of information trickling through. The initial radiological finding of cerebellar atrophy got expanded to MSA. I honestly thought he’d got it wrong, that something had got lost in translation, especially given my father and step-mother didn’t speak French very well. I turned to the internet and found out that it was a bona fide condition.
It’s difficult to talk about my father’s expectations of me – on the one hand he says 'you’re my daughter, not my doctor' but I also felt he was looking to me for answers and that I should have known more and been better able to advise him.
What I found particularly difficult was talking to my father about end-of-life issues, something he wanted to do. I feel confident to do this with my patients but I found it incredibly difficult to do with dad.
It is also very hard to witness what MSA has done to my father. He was a university academic, he’s an incredibly intelligent man but now he suffers from extreme fatigue and communication is very difficult. He is bed bound and my step-mother provides around the clock care. She uses a hoist to help him with personal care, his bladder is completely dysfunctional.
I spoke to my colleagues and no-one had heard of MSA. This makes me worried, for my father and for other MSA patients. As a GP I know that good care is often the result of a recognised care pathway that involves multi-disciplinary teams. What happens to the patients who have rare diseases?
Since my dad was diagnosed with MSA I certainly have far more of an open mind about rare disease and I’m certainly more proactive in finding out about support groups for my patients.
So my advice to colleagues is to keep an open mind. While we’re not expected to know everything, we should know where to look and where to direct our patients.
Aysha Kemp is a GP in west Yorkshire
The Multiple System Atrophy Trust
Very interesting to read of a daughter coming to terms and dealing with her father's MSA. My dad also has MSA and its been very hard for us all to watch him decline. My dad was always a young, active man but now at 74 years old he struggles with his balance, speech, tiredness and emotions. My dad is able to get out on his mobility scooter and a walking frame. The MSA trust have been an absolute life line to me, their leaflets and nurses have answered many questions I have had over the past few years. It truly is a wicked condition.
ny husband was diagnosed with msa multi systems atrophy about 18 months ago. although he had symtoms long before that. he was a very very healthy man really fit. he is 79 years old.like you say there is not many people out there who can help with finding out things about this terrible disease, only seaching on the web have helped us we have 5 children who have been brilliant, my husband suffered heart failure in november.but has recovered slowly.has real difficulty walking but still tries too,he now has lot of medication not sure it works,as my family say wish we had magic wand to make alan well again . mrs christine spratt,
My husband was finally diagnosed in July 2006, after having a prostate condition,which was the first onset of MSA, he was referred to a heart specialist due to the dizziness. It was this consultant that referred John to the Brain hospital in London,he had seen this condition during his training.Unfortunately John died very suddenly whilst we were on holiday in September 2008.During those years of illness only one other local doctor had heard of the terrible illness.Whilst it has been a tragic loss for me,at the end a blessing for John at 62 trapped in his own body,he too was a very hard working active man,loving husband and a brilliant dad,our two boys were devastated,not helped by the loss of their beloved grandmother six months previous.The more medical and care staff to learn about this illness the better.My thoughts are with you at this awful time
Very interesting article. I am currently in the same situation. My father was diagnosed with Cotico-basal degeneration, which is another form of Parkinson's Plus, and somehow I felt this immense amount of pressure to know everything and anything about the disease and the latest updates on treatment. It wasn't easy, as my family are in Kuala Lumpur whilst I am here in the UK, and therefore you could imagine how much pressure, guilt and grief I was in thinking about my father. However, I soon realised it wasn't about them (my family) wanting me to know it all. Instead they wanted my help in terms of finding out more regarding CBD. Eventually, my father is now under the care of a wonderful neurologist who would go out all the way for my father, and within the limits of confidentiality, would discuss with me regarding my father's condition. I think your advice on 'keeping an open mind' is spot on for anyone in a similar situation
My dad had MND and I made the diagnosis . He never wanted to know the name of the disease . I had to be his doctor and daughter as I no help from doctors in. London . They refused to do terminal care at home !! I wrote it upin BMJ 2005 My Memorisable Patient .
He died in the car as we we're bring him to my home so doctors I knew could look after him
www.ncbi.nlm.nih.gov › Journal List › BMJ › v.331(7512); Aug 6, 2005
Aysha describes honestly and vividly the experience of seeing her father 's gradual deterioration with this progressive and rare condition. Her account highlights the challenges of caring for patients with rare conditions,providing proactive palliative care and carer support.
Aysha also raises the very difficult challenge of discussing end of life care wishes with her father. How difficult it is to get the timing of such discussions right for the patient , and how much more difficult when the patient is your beloved father.
I feel sure there must be several rare neurological conditions we cannot put a name to. Caring for these unfortunate patients requires the best that palliative care can offer, holistic,responsive and compassionate. It seems more important than ever that patients should be given the opportunity to express their advanced care wishes to their families and carers before their illness robs them of the ability to do so.
The MSA Trust is keen to connect with doctors to raise awareness about MSA. When an individual with MSA contacts the Trust, we always send their GP a factsheet about their condition, with the person's consent of course. And health professionals can become members of the Trust free of charge which means they will get up-to-date information about MSA. Please register on our website - www.msatrust.org.uk.
I also worked as a GP when my father was diagnosed with MSA sometime in the late 1990's.Prior to diagnosis his symptoms had been ascribed to all sorts of conditions including, of course, depression. SSRI's made him feel terrible. I remember reading up about the condition and being so sad at what lay ahead for my Dad. Fortunately my mother was introduced to the MSA trust early on and Daddy had wonderful support from a specialist nurse. One of the funniest things was his being advised to put salt on his food and take fludrocortisone to try and stop his blood pressure dropping as he stood up. Dad had always loved salty food and I'd always told him it was bad for him. With lots of support we were able to keep Daddy at home and he died peacefully on December 23rd 2003 - all the family gathered for Christmas and celebrated his life as he would have wanted. I remember being very upset when a colleague said of MSA: " that's just old age isn't it" - it certainly isn't and one day we may understand it better. Meanwhile the MSA Trust is fantastic and deserves our support. I hope things aren't too hard for your father and step-mother. Thank you for sharing and for bringing MSA to other doctors' attention.
Thank you all. After several years of struggling with my husbands difficulties working, and refusal to see a doctor ( ? because I was one, or because his GP was my partner) I Googled and diagnosed Huntington's Disease....another difficult one for any GP or consultant to piece together without a family history ( often hidden). Its not that rare, yet no pathways, much denial from professionals and little proactive, integrated care across physical, mental and social care providers. Our kids( at risk ) have watched me battle angily for help to manage symptoms and give up a job I loved as a GP. These terrible illnesses are not lifestyle choices, our profession could offer more. Again our charity pays for Specialist Advisors not the NHS. www.HDA.org.uk
I am also a GP and likewise had never heard of my father's diease - it is a very rare neurological disorder called Progressive Ataxia with Palatal Tremor (PAPT). It is so rare, that it is referred to by its symptom picture only and not by a specified name. It is far, far, far rarer than MSA and only a few cases exist worldwide. There is no cure, there is certainly no support group, Dad's GP knows nothing about it and his Neurologist has never seen a case in his life. Seemingly it is the stuff of text books and medical exams. Not great news for the suffering patient and family. It is a progressive neurological disorder, probably not unlike what has been described above, and the journey is certainly a difficult one. If anyone knows anything about it, please get in contact. Aside from that, I agree - let's all keep an open mind. Best wishes.
I have the greatest sympathy for Aysha and her father and mother and am moved by the previous comments.However the 'end of life' issue that was not discussed is well illustrated by the Julie Walters film "A Short Stay in Switzerland' based on a true story of a GP with one of the neurological degenerative diseases. Surely those facing inevitable decline should be able to choose to end their lives in their own country? Why does the BMA ARM insist on opposing assisted dying for people with incurable disease like this?
My wife devloped this condition in the early 1990s and felt she was labelled as a "neurotic lady doctor". Hypotensive episodes were investigated and a cardiologist stopped her on an exercise ECG test as she became hypotensive. Angiography revealed normal coronary arteries so she was told there was nothing wrong. Fortunately another cardiologist interested in hypertension recognised the Autonomic failure (Post prandial, orthostatic and exercise induced hypotension) which was confirmed by another consultant (a geriatrician) with tilting tables, and finally a neurologist referring her to Professor Mathias at Queen Square. As it became increasingly difficult for her to walk, turn in bed, write and even feed herself the disease progessed. Speech and swallowing are becoming more serious problems to cope with, but she has remained remarkably cheerful.
And so.after many years of uncertainty the diagnosis was made..still a bit tentative because there is such a wide spectrum of Parkinsons Plus illnesses, but we have had very good support from District and Specialist nurses, and now professional carers. The MSA trust is a great organisation which gives advice and reassurance, as well as funding research and providing information to doctors and nurses who are interested., It too needs all the help it can get!.
I Really Understand And feel For You and your Father And Others. Reading Your Post Reminded Me Of My Own Father Who Has now Sadly Passed Away With MSA 8 Years Ago He Was Just 65. It Is So Heart Breaking To see A Love One Suffering With This Dreadful Disease And To Watch Them Deteriorating Fast And There Is Nothing We Or Drs Can Do About It, Like You I Had Never Heard Of Multiple System Atrophy. My Father Saw So Many Consultants They Said He Could Have Parkinson's It Took so Long For Drs To Diagnose My Fathers Condition. My Father Was Deteriorating Fast He Had No Bladder Control/ No Balance/movement/. I Was Speaking To A Close Friend About My Fathers Condition And she Put Me In Touch With a Mr Silver A Neurosurgeon And That's How My Father Was Diagnosed With This Terrible Disease. I Started Research MSA And Found The Multiple System Atrophy Trust They Helped Me A Great Deal There Website Is www.msatrust.org.uk. Thinking Of You And You Father.