How I hate FA

Here's a tip: If you want to feel really miserable and you have Friedreich's ataxia, try filling out an FA Medical History as I did yesterday.

Of the 20 or so issues listed with this question, "Which of the following FA-related health concerns do you/the patient have currently? (Select all that apply)," I checked 16 and added a 17th that wasn't there (cold feet).

I checked:

• Issues with balance/walking/regular falls;
• Coordination in hands and arms and manual dexterity – e.g. difficulty grasping/gripping/holding objects, or fine motor skills; 
• Vision impairment/vision loss; 
• Nystagmus/eye movements; 
• Hearing impairment/hearing loss; 
• Speech impairment/dysarthria; 
• Choking/swallowing difficulty; 
• Sleep apnea; Incontinence and/or other urinary issues and/or any bowel issues; 
• Depression; 
• Spasticity/rigid muscles; 
• Fatigue.

Trying to make me feel better, Mom pointed out that many people with all those problems would be stuck in bed. Didn't help.

Equally frustrating was the list of stuff I have done to help my body:

• Physical therapy, including aqua or hippo therapy; 
• Medications or supplements; 
• Stretching; 
• Exercise (cardio or strength training); 
• Bracing (back brace for scoliosis, leg or foot braces, AFOs); 
• Massage therapy; 
• Occupational therapy; 
• Speech therapy; 
• Modifications/accommodations at work/in school/at home; 
• Mental health services; 
• Use of adaptive devices; 
• Diet/nutrition changes.

I also applied for a Phase 1 trial that my neurologist had called a cure.

Sounds great. Of course, I probably don't qualify.