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Frank Smith

Franks journey with Dermatomyositis

Symptoms

It was at the end of August in 2010 that I noticed that my ability to whistle a tune was diminishing, I gave no thought to it at that time but as september passed  and we entered October I was starting to have difficulty swallowing harder food stuff such as Meat, Bread, etc. I was also starting to have bouts of “Wind” and feeling bloated, I made an appointment with the doctor who said it was nothing to worry about and sent me away with a prescription for “Gaviscon” however the Swallowing got progressively worse and in November the doctor decided to send me for an “Endoscopy”. The outcome of this was that they diagnosed a “Twisted stomach” cup and spill stomach and prescribed Omeprazole  for “Acid Reflux” however although this helped with the Indigestion which in fact was “Acid Reflux’ it did not improve the swallowing and in January 2011 I was diagnosed by my doctor as having “Dysphagia” and referred to the hospital for a “Barium Swallow”.  at this time I had lost a lot of weight. The appointment was towards the end of February and  that was what I was waiting for.

On the day of the Barium Swallow I attended the Hospital and the doctors started the test within 10 minutes she stopped the test and said she could see what the problem, she could see a problem with the second swallow in the Esophagus  and that I would be given an appointment to see a Neurologist, and I was told to go home and my GP would be in touch. Within 2 hours of arriving home my GP contacted me and I was given an appointment with a Neurologist within 4 weeks, during the following week I was staying at my sons house when I was admitted to hospital with Breathing problems.

Diagnosis

In the hospital in Portsmouth UK I was seen by a Neurologist who looked at the rash on the back of my hand,s and ordered an EMG test, and I was also put on a Nasal feed tube as my weight had dropped from 13.5 stone to 8.5 stone. after a week at the QA Hospital in Portsmouth I was transferred to the Southampton Hospital where I had a Muscle Biopsy along with a Cat Scan, Pet Scan, Deep Body Scan, Heart Echo Scan and Pulmonary function Test. The diagnosis at that time was Dermatomyositis with Chronic Dysphagia. I was started on 60 mg of Prednisolone per day and stayed at Southampton for two weeks and then transferred back to QA Hospital at portsmouth. I was discharged back home on the 25th May 2011 and had a care package in place as I live on my own.

Back home

once back home I was visited by the District nurse , and had a Hospital profile bed installed and my family arranged the house so that I could live on the ground floor, as I could not climb the stairs, I also had limited mobility in my arms and could not lift my hand above my shoulders so I have a carer come in every morning to wash my face and neck, and comb my hair. I see a Dietician and a Speech therapist on a regular basis and when I came home from Hospital I was on a puree diet until November 2011 and am now on a Soft lumps diet. My Medication now is 10 mg Prednisolone a day and 15 mg Methotrexate a week on a friday, also folic acid and Calcium tablets and vitamin D. I still have some difficulty walking for more than 20 min,s before my leg muscles get tired and my arm mobility is much better but still need the carer in the morning. I am lucky in that I have a good  friends to take me shopping with the wheelchair and my family visit me weekly and I go to my sons twice a week, one problem I do have is that they have detected irregular heartbeats due to the heart muscles being weakened by the Myositis so have a Reveal heart monitor fitted, and i still suffer from Acid Reflux and take Lansoprazole for that.

My thoughts

I feel that I am lucky in as much as I did not get this disease until I was 67 years old and is probably one of the reasons that my muscles are still very weak, It took a long time to come to terms with the fact that I have to rely on Family and Friends to help me but I have now accepted that as a part of my new life for the foreseeable future. I think my sense of humour has helped a lot and I write my weekly blog journal with humour also I have a Myositis website which I hope will help people, so although I did not Visualize this for my retirement, I have to accept that it has happened and get on and enjoy retirement.

 

One response to “Frank Smith

  1. Bob Beddow

    April 27, 2014 at 1:11 am

    I have inclusion body myositis and loved your poem. My wife found it a couple of weeks ago and I read it every day.

     

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