.
This post is long over-due, but here goes:
1.) In December of last year (on New Years Eve, of all days!), I was diagnosed with a disease that goes by a few different names:
Hereditary Periphial Neuropathy (HPN), Motor/Sensory Neuropathy, or more specifically - Charcot-Marie-Tooth ( named for the 3 doctors that discovered it in the 1800's )
This disease is hereditary, and affects about 30 people out of 100,000.
It starts in the perephial nervous system (the out-lying, or longest nerve bundles, i.e. your feet and lower legs, the later, your hands and lower arms)
It is a neruopathy, so the nerves are affected, but it falls under the umbrella of Muscular Distrophy, because the muscles are affected too.
The nerves become damaged and slowly start dying. As the nerves die, the muscles atrophy, because there is no nerve action to stimulate them.
SO - patients (me!) develop "foot drop" because they have difficulties lifting their feet and legs high enough to clear the floor (I wear leg braces to keep me from falling)... blah blah blah, and yadda, yadda, yadda
There are a few other inconviences - fatigue, hand problems, nerve pain - but you get my drift...
There is no cure, and at this time, there is nothing to slow the progression. Physical therapy can help strengthen the remaining muscles, but over-use can cause further damage.
Change #2) You are all in this industry, so you know how physically demanding it can be! Throughout March, April, and May, I slowly reduced my hours... I couldn't do the work I used to do as a designer. In June, even the proms ended, so my days of sitting and doing wrist corsages for 4-5 hours a day ended. I stopped working.
Change #3) I am in the process of applying for SSDI ( Disability! who woulda thought?)
Change #4) I leave for Boston, and Symposium TOMORROW!! Yippee!
Last September, I started putting away $50 per week, to achieve a dream - to go to Symposium, and test for AIFD/(now CFD). AIFD even certified the design classes I was holding through our State Association, as one of their approved "Pathway Programs" - I was getting ready - brushing up on learning by teaching!
When I was diagnosed with this thing, I already had $1300 saved. (thank goodness!) I had about 10 neurologist and doctor appointments, and had to pay my co-pay for $1,200 leg braces... hmmm - I started dipping into my "Symposium savings"
Anyway, I made the decision to still go to Symposium (my "Education Only" registration was $585, plus, my wholesaler offered a $100 discount copupon - so my supersaver registration was less than $500)
Thats it in a nutshell!
My life has changed, but just with inconvieniences. I rest more often, am learning what is important to do, (and what can wait) and am enjoying the sunshine.
I still love this industry, and soon, hope to venture back on the path!
Valerie in NH
This post is long over-due, but here goes:
1.) In December of last year (on New Years Eve, of all days!), I was diagnosed with a disease that goes by a few different names:
Hereditary Periphial Neuropathy (HPN), Motor/Sensory Neuropathy, or more specifically - Charcot-Marie-Tooth ( named for the 3 doctors that discovered it in the 1800's )
This disease is hereditary, and affects about 30 people out of 100,000.
It starts in the perephial nervous system (the out-lying, or longest nerve bundles, i.e. your feet and lower legs, the later, your hands and lower arms)
It is a neruopathy, so the nerves are affected, but it falls under the umbrella of Muscular Distrophy, because the muscles are affected too.
The nerves become damaged and slowly start dying. As the nerves die, the muscles atrophy, because there is no nerve action to stimulate them.
SO - patients (me!) develop "foot drop" because they have difficulties lifting their feet and legs high enough to clear the floor (I wear leg braces to keep me from falling)... blah blah blah, and yadda, yadda, yadda
There are a few other inconviences - fatigue, hand problems, nerve pain - but you get my drift... There is no cure, and at this time, there is nothing to slow the progression. Physical therapy can help strengthen the remaining muscles, but over-use can cause further damage.
Change #2) You are all in this industry, so you know how physically demanding it can be! Throughout March, April, and May, I slowly reduced my hours... I couldn't do the work I used to do as a designer. In June, even the proms ended, so my days of sitting and doing wrist corsages for 4-5 hours a day ended. I stopped working.
Change #3) I am in the process of applying for SSDI ( Disability! who woulda thought?)
Change #4) I leave for Boston, and Symposium TOMORROW!! Yippee!
Last September, I started putting away $50 per week, to achieve a dream - to go to Symposium, and test for AIFD/(now CFD). AIFD even certified the design classes I was holding through our State Association, as one of their approved "Pathway Programs" - I was getting ready - brushing up on learning by teaching!
When I was diagnosed with this thing, I already had $1300 saved. (thank goodness!) I had about 10 neurologist and doctor appointments, and had to pay my co-pay for $1,200 leg braces... hmmm - I started dipping into my "Symposium savings"
Anyway, I made the decision to still go to Symposium (my "Education Only" registration was $585, plus, my wholesaler offered a $100 discount copupon - so my supersaver registration was less than $500)
Thats it in a nutshell!
My life has changed, but just with inconvieniences. I rest more often, am learning what is important to do, (and what can wait) and am enjoying the sunshine.
I still love this industry, and soon, hope to venture back on the path!
Valerie in NH
