CILLA’S PSP BLOG Part 2

This is the second post in Cilla’s series, compiled and written by Cilla’s husband.

Cilla in 2002 on Christmas Day. At this stage, Cilla had no idea what was looming ahead.

So, how did this all come about? What were the first signs? How did the Medical profession deal with me?

Let’s start with the early signs!

Like everybody, we sometimes rely on lists. In this instance I remember going to a supermarket and wondering what the scrawl was I had written down as a shopping list. This particular list was as difficult for me to read as it was for others. Over the coming months, trying to decipher what I had written became more of a problem. Eventually, my husband Steve had to take over writing cards etc on my behalf. In truth, it was first deemed a bit of a joke, but as time went on it became worrying since other signs started to become to the fore.

Take my eyesight as an example; here, I became more prone to bright light than ever. By this I mean, even in the dullest of days I felt the need to wear sunglasses when I went out. Apart from the occasional odd look from strangers, I felt comfortable wearing the glasses and wore them every time I left the house.

Overriding all of the first few symptoms was my lethargy and tiredness. I felt tired for no apparent reason and felt comfortable in bed. Here I could sleep, however, even after a good sleep I felt just as tired. This affected my daily life and things became less important around me. I didn’t neglect housework or anything like that; no, I just found everything harder to do. Things took longer to do! Sometimes, just getting out of bed was an effort, so it seemed easier to stay!

After a while, I felt that the situation was becoming ridiculous, so I made an appointment with a Doctor. The Doctor examined me and came to the conclusion that I had ME. Commonly known as Yuppie Flu, it is in fact Chronic Fatigue Syndrome or Myalgic Encephalomyelitis. I suppose I cannot really blame the medical profession for that diagnosis since these are the symptoms of ME:

1. Debilitating low energy levels

2. Painful muscles and joints

3. Disordered sleep

4. Gastric disturbances

5. Poor memory and concentration

6. Neuropsychological complaints

7. Painful lymph nodes

8. Prolonged fatigue after exercise

Having, what I thought was ME, somewhat helped my state of mind since my condition had been going on for far too long. Giving the ailment a name was rather comforting, since it meant I was not making it all up. I am still convinced there were a few people who could not understand the predicament I found myself in. Anyhow, I had some form of respite due to this revelation.

As the years progressed two things happened, both of them at the behest of my Doctor. Firstly, I was assigned a psychologist since the events over the years had taken its toll and I felt depressed. Secondly, I had an appointment to be examined by a professional within the ME Association. The important of the two, in my mind, was the visits to the ME Associations Centre based close to where I live. What made these visits important was that I saw other ‘patients’ and somewhat came to a separate conclusion myself. Seeing them arrive, pick up a magazine, read for a while then freely move into their appointment made me wonder. I wondered if they were the success stories and were there for ‘follow up’ appointments. As it happens, I found out that they were, in some cases, like me, first time visitors. My final supposition was that there were several levels and I must have been at the top of the tree!

Then something happened to make me look at everything again!

I was suffering from hot flushes and wanted to speak to a Doctor about my medication for HRT. Hormone Replacement Therapy is something I saw as separate from my ‘condition’ and wanted to seek out better medication. Since my Doctor was not available I accepted an alternative appointment with a different Doctor.

Aided, I dutifully attended the practice and was able to tell the Doctor everything that had happened over the last four years. She listened, showed concern and compassion before referring me to see a specialist.

The specialist in question was an expert in Parkinson’s. It took three appointments for him to recognise the possibility that I might have PSP… My husband asked, “PSP, what the hell is PSP?”

The subsequent referral confirmed my predicament!

That was just over a year and a half ago and I have now been catapulted into another dimension…

Read the third part of Cilla’s blog, like our Facebook page to keep updated: http://www.facebook.com/PSPAssociation

By December 2008 there was already a marked difference, which manifested itself in many ways. Here Cilla is pictured with our son Joe and grandson Jorge who came to stay for a few days before Christmas. Cilla was unable, at that time, to travel too far although this special visit to view some local Christmas lights was an exception. It is noticeable that Cilla was unable to apply her makeup despite this previously being a main feature in her life. It would have once been unheard of for her to leave the house so unadorned

CILLA’S PSP BLOG Part 1

This blog is about me, Cilla, and my relationship with the progressive disease PSP. Although compiled and written by my husband I have given a nod of approval for its distribution. Ironically, a nod is almost all I am capable of these days!

PSP is the understandably shortened version for Progressive Supranuclear Palsy.

The abridged version of the medical term is outlined directly below.

Progressive supranuclear palsy (PSP) is a rare degenerative disease of the brain. The disease impairs movements and balance. Many people with PSP also experience changes in mood, behaviour, and personality. A decline in cognitive mental processes, such as thinking, memory, attention, and speech, is not uncommon. When these mental changes are severe enough to interfere with everyday activities, they are called dementia. 

The name progressive supranuclear palsy seems like a mouthful, but it accurately describes the disease. PSP is progressive; meaning that it gets worse over time. The disease affects the part of the brain above the nuclei (“supranuclear”), which are pea-sized structures in the part of the nervous system that controls eye movements. Palsy means weakness, and it is this characteristic weakness in eye movements for which the disease is named. PSP is sometimes called Steele-Richardson-Olszewski syndrome, after the 3 scientists who first described it in 1963.

About 20,000 people in the United States have PSP. The disease usually develops in people aged 60 years or older. Symptoms typically become noticeable in the early 60s, although the disease sometimes affects people in their 40s or 50s. PSP is slightly more common in men than in women.

Because PSP mainly affects older people and has somewhat similar symptoms, it is often mistaken for Parkinson disease, a much more common movement disorder. The distinction is important, because treatments that help many people with Parkinson disease do not help those with PSP. Unfortunately, we do not yet have an effective treatment for PSP.

Firstly, I would like to explain how it now affects me:

1. I now lack writing skills

2. My speech is soft, stuttered and repetitive

3. I have lost the ability to balance unaided

4. Because of point 3, I often fall if unaided

5. Something I do not really wish to admit to, is urinary incontinence

6. Extreme tiredness

7. Loss of normal sight and vision

8. Indifference/Apathy

9. Bouts of Anger and Frustration

10. Occasional Forgetfulness

Well, I think that is enough to be getting on with for now!

By the way, this is me:

This photo was taken in a pub garden with our son Adrian. Although not obvious, I’m in my wheelchair and on the way to one of the many hospital visits in Winchester. We stopped off to meet up with Adrian who was in the area. Lunch is an experience in itself and eating with conventional cutlery is a problem. Being adverse to light means that the sunglasses are a must when out!

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