First Timer.. - Topic
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I really don't know where to start or how to begin expressing myself. To be honest, I think I'm in the stage of denial. Sometimes I think if I can block it out, then it's easier to cope.
My partner who is almost 32 years old has being diagnosed with KD. He is the love of my life and truly the most wonderful and caring man you will ever meet. There is no question about it, I will be by his side no matter what.
The only symptoms he has now is muscle cramps in the left of his leg and he is always tired. This is now effecting his preform at work. I dont know how much longer he can keep up full time work. He was always such a happy and positive person and this has really hit him hard. He is becoming more withdrawn from him and I'm scared this will lead to depression.
Can anyone please give me some advice in relation to easing his muscle pains and perhaps advice on treating his tiredness?
Thanks so much in advance and I'm blessed to come across this site.
There is a wealth of information on the KDA website and in my Living with Kennedy's Disease blog on the subject.
Several factors weight into his situation including age of onset, the CAG Repeat number, the type of work performed, if he exercises or not (and if so, the type of exercise and frequency), the support system available, etc.
Muscle cramps in the legs are normally an early onset symptom. They are painful, but will decline in severity and frequency or time. Many of us grew out of them.
The fatigue is an indication of over-doing something. Rest is what is needed to recover. Also needed is the awareness of what specific activity is causing the fatigue. With the knowledge, a person can reduce or minimize the activity.
At 32, he is a young man. And, since KD is a slowly progressing condition, your partner should have a long, fruitful life. Often, once a person goes beyond the initial awareness and shock, life settles back into something relatively normal as long as nothing else happens (physical injury, for example).
When a person first hears the news, it seems to be the end of the world. Initially. fear and uncertainty overwhelms a persons thoughts. Time and understanding, with acceptance leads to more normalcy in life. A support network is needed to help a person navigate through those days when life just doesn't seem fair ("Why me?"). And there will be many of them.
Knowledge is power when it comes to understanding and accepting this condition. The KDA Forum is one resource as well as the KDA chat rooms (for you and your partner) to help understand how others are dealing with 'living with this condition'.
If you have more specific questions, I or several others will try to answer them (or locate someone who hopefully can). We are here to help if we can.
You and your partner are not alone.
One of the most important things to bear in mind is to "Treat the Symptoms". While the blood test for KD is definitive, not everything that causes pain is KD. Only after everything else is ruled out should KD be blamed, and even then ask why. KD is a gain of function disease, nerves are overfiring and muscles are trying to compensate; help them out. Stay fit, eat well, wear proper foot wear with comfortable soles. Support socks can relieve a lot of stress in an active life. Find a physiotherapist who will treat you as a recovering athlete and not an old man w a debilitating disease. At sixty I was run down and could no longer cope in a very physical mill job, I was diagnosed with KD, put on disability and needed a forearm crutch in very short order, then a wheelchair at times to make it through the day. Two years later, I am back on my feet and putting in long physical days. It takes a long time to heal damaged muscle, especially if you are stressed and suffering from fatigue. Use all the labor saving devices you can and save the effort for things that matter. STAY SAFE, no falling off ladders, it hurts and takes too long to heal. Treat the symptoms (including depression)
Paul makes a good point. I have written about the topic of being cautious about relating every health issue with KD. The key is to have an open and honest relationship with your GP and neurologist.
A few blog articles I wrote on this subject are shown below.
- not-every-health-issue-is-related-to
- why-is-my-cpk-count-so-high
- there-is-nothing-uniform-about-this
- is-it-forest-or-trees
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