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CMD Outcome Measures
I was invited to talk about my life with CMD at a conference in London last week. It was a workshop discussing how motor function can be measured for the purpose of a future clinical trial and they wanted a patient perspective. One question that was asked regarded how patients can measure their fatigue each day. Measuring things like strength are easier but fatigue seems more complex.
I have been doing a lot of thinking about how I might explain my fatigue levels each day. I have come up with the following thoughts:
The quantity and quality of sleep.
How long it takes me to get off the bi-pap in the morning.
How much I use the bi-pap in the day or how long I am without it.
Length of time standing in full length KAFOs (knee/ankle/feet orthotics) – if I am tired I do not hold myself up as well and this puts added pressure on my back, knees and feet so have to sit sooner.
Do I choke or have problems swallowing? I have started to notice this occurs when I am tired, more so at the end of the day.
Is speaking off bi-pap an effort?
Is it more difficult than usual to hold my head up, sit without support?
I would be interested to know other peoples’ ideas and thoughts on this subject. It was a very interesting day and I got an insight into what how clinical trials develop through the planning stage. If anyone would like to know more, please let me know. I have looked for a link but because it was only last Friday/Saturday it is no longer listed as an event and is too soon for a report.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: CMD Outcome MeasuresIt is so difficult to measure fatigue, it can be so individual. I know for me, the level, quality and quantity of sleep have a direct effect. Whether the day before was a busy exhaustive one.
Standing regardless of the condition of my back brace is minimal, it increases the discomfort level rather causing one of its own.
When moving around or reaching, lifting something I so often spend that time holding my breath as that stabilizes the strength of my rib cage.
Interesting point of view you were able to get Sarah
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: CMD Outcome MeasuresGetting people to understand about muscl fatigue is such a problem. They just cannot and do not understand.
At the recent Neuromuscular conference in Taunton, the speaker suddenly put me “on the spot” asking what is the worst thing about your condition”. I blurted out “Living in a single person household – things just do not get done”. On balance that is it. When people turn up you pull everything together, get a burst of adrenaline and do your best to appear normal. I know that if I told them that today I was shocked to find three days washing up in the kichen and then a minute later work out I had not taken my pills for three days, then only one word would come to their minds, LAZY !!! I can quantify fatigue by how many mugs of tea or plates of food I drop. This happened in front of the relative who I have told th most of my condition. “Oh you are so Clumsy”. This is what we face.
Postcript. I was then asked what was the best thing about my condition. “Living in a single person houseold” I said and that is no doubt. The two similar people I now have turned their spouse into an indentured slave. They just sit on the couch and are very quickly vegetating. I am pleased to keeo “tilting at the windmills”, it is what keeps me going.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: CMD Outcome MeasuresGetting back to the points that Sarah asked.
Sleep and swallowing.
Sleep, quality and quantity is a problem. You would think people with lots of fatigue would have no problem sleeping. I find that it is impossible to get the right balance. At times you lie awake for hours at night feeling every small muscle ache, yet conversely in the daytime when watching my lifetime interest of cricket I am suddeny asleep. It is not that you sleep in the daytime because you had a bad night or you cannot sleep at night because you slept in the day. These things happen when all things are equal.
Swallowing is a misunderstood problem. Till three weeks ago I thought all people had food “go down the wrong way”. Then the speech and language therapist came and asked to see me eat a meal ??? It seems in response to muscle issues, I have developed a two stage swallow compensating for slow muscle release. Still though food gets down into the lungs and can cause infections. The term for this is Aspiration Pnemonia. Imagine my surprise a week later when I found my mothers death certificate – Aspiration Pneumonia. I had missed this completely just thinking elderly smoker – reading it as pneumonia. I respectfully suggest other people on this forum might not even realise their swallowing might be affected.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: CMD Outcome Measures@taungfox wrote:
Swallowing is a misunderstood problem. Till three weeks ago I thought all people had food “go down the wrong way”. Then the speech and language therapist came and asked to see me eat a meal ??? It seems in response to muscle issues, I have developed a two stage swallow compensating for slow muscle release. Still though food gets down into the lungs and can cause infections. The term for this is Aspiration Pnemonia. Imagine my surprise a week later when I found my mothers death certificate – Aspiration Pneumonia. I had missed this completely just thinking elderly smoker – reading it as pneumonia. I respectfully suggest other people on this forum might not even realise their swallowing might be affected.
You are so right. It wasn’t until I saw a Speech Therapist at my annual check-up that I realised I had issues with swallowing. I then had a bad aspirating episode and got more advice and like you had someone watching me eat. I didn’t know that I do a funny mouth movement each time I swallow for a start! It also made me aware that it takes two or three swallows to clear my throat and so when I am tired, I try to remember to concentrate more on the way I eat and stop the chatter (although I have still not mastered that one
). If I aspirate it can take a good hour sometimes to get rid of the food, often done by tilting my head back and putting a bit of pressure on my throat.Thank you both for your contributions to this discussion, keep them coming people
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: CMD Outcome MeasuresThat is right. Forgot to say the upshot of the swallowing issues was that I have to have strategies for eating. Just as you say full concentration and no talking and the correct posture and angles. For drinking do not tip your head back, when that happens you open the airways.
This was the final catalyst for me. No eating out ever. Once you make the decision all seem calm and good an sensible. nothing to worry about.
Weird how, unitll specialist tells us we all assume we are completely normal.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: CMD Outcome MeasuresI measure my fatigue by how well I do everyday things. My driving can suffer even picking up a pen can be difficult. For instance today I’ve been using my new power chair and because its not right for me which I’ve just found sitting back in my old chair I’m now having problems cause the new one has tired me out!
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