Diagnosed @ 51 - Vision too?

In doing some of my reading on Spastic Diplegia, I saw that vision could also be involved in younger patients.  Now I'm wondering if my recent vision problems aren't part of this too.  I've called & spoken to Dr. H's nurse (neurologist) and told her that I failed to mention my vision changes during our meeting.  She's going to get back with me after he returns next week and see if they could be related.  I told her that if he thought they were related, I would like to go ahead and do the scan of brain/spinal.  I can do without my legs if I have too, but do not want to lose my eyesight.

I also called Dr. W (opthomologist) & he wants to see me on Tuesday.  I saw him in January and went from just reading glasses to tri-focals.  What really bothers me is that I can no longer thread a needle without my glasses & really need to use a threader too!  I've called my last doctor to have my previous vision results faxed.

I've done all that I can do for now & just have to leave it in the hands of God for now.  I think the "Serenity Prayer" will be my mantra until I see Dr. W and hear back from Dr. H.

Diagnosed @ 51 - Uncertainty Attack

I have never been one to pass up an opportunity for a massage.  I've used Massage Envy, had massages at our retreats, & used different therapists at the doctor's office regularly.  I have a standing appointments at Dr. B's for Wednesday & Saturday.  Massage has kept me functioning and Dr. H, my neurologist, agrees that they are a valid therapy for my condition.

I was told on Wednesday that there would be a new therapist at Dr. B's for my Saturday appointment.  He was recommended by another therapist & had been "tested" by the staff.  I had no problems with that on Wednesday.  That was before seeing Dr. H on Thursday and the DIAGNOSIS.

Yesterday morning, I woke up early (unusual!) and was a mess.  I doubted whether I should go for my massage - especially since it was a new therapist.  Ron (hubby) was very reassuring & comforting, so I got dressed to go.  Still uncertain but I got in the car & left.

On the drive a song came on the radio that spoke to me - "I Won't Give Up" by Jason Mraz http://www.youtube.com/watch?v=O1-4u9W-bns .  It lifted my mood and I walked into Dr. B's office feeling much more certain.

Ron had spoken to R at Dr. B's Friday night during his appointment, so he was already aware of my new diagnosis.  I was the first appointment, so he gathered the new therapist & the doctor filling in for Dr. B for a powwow with me before my massage.  We discussed how we should proceed & I felt better when I entered the therapy room.

It was not a mistake - I felt even better AFTER my massage.  S found several knots in my shoulders and my back and neck were in much better shape afterwards.  I gave S a "thumbs up" and have no problem with him being my new therapist on Saturdays.

I had also scheduled an appointment for yesterday afternoon with J, my former therapist, to work on my "steel cable" legs.  Now this appointment was anything but enjoyable.  In fact, it was down right painful. I cussed, threatened to break J's thumbs & various other threats during the session. Understand, that J would have let up at any time if I had told him too.  J spent over an hour working on just my legs and butt.  J was very worried about me when I went to leave & I called to let him know that I made it home and was able to move & walk.

I crashed shortly after eating dinner last night.  I woke up a few times but had no problem getting up and walking.  This morning, I have more flexibility in my legs than I've had in a while.  I have a few sore spots but nothing I can't deal with.  The session with J was definitely worth it.

Diagnosed @ 51 - A Blessing?

It's now been 24 hours since I was diagnosed with Spastic Diplegia or Little's Disease, a form of CP.


I found HealthBoards Health Message Board last night & was relieved to see I'm not the only one that has been diagnosed as an adult.


This morning I decided to start this blog. My first posts were quick summaries of what went through my head yesterday.


I failed to mention that my husband had gone to the first appointment with my neurologist & feels comfortable that I am in good hands. We discussed getting a 2nd opinion (other than those in my earlier post!) and don't feel it is necessary at this time. I will continue with Dr. H & trust his care.


Now for an attitude change! It's time to change the "Why Me?" attitude. I need to consider what I have been able to accomplish with a condition that I have had since birth.


I learned to walk. I had a very full & active childhood. I attended school & marched in band!


I've married a wonderful man & have 3 beautiful children. I even have a granddaughter!


I am able to get up every morning (some times with difficulties) and go to work.


I am BLESSED that I did not know I had CP until the age of 51. I have very competent doctors (primary-care, neurologist & chiropractor) who will work to keep me functioning the best I can for as long as I can.


I will continue to see massage therapists as often as insurance & time will allow. My husband & I are looking for a yoga class to improve flexibility. I'm also going to commit to working out at the gym to improve my flexibility and lose weight (that's an entirely different storyline!).

Diagnosed @ 51 - Second Opinions?

My brother-n-law, RDB, has a PhD in bio-chemistry & does medical research on cholesterol. I had to give him a call & see if he thought my new diagnosis was "medically feasible".


I talked about my visit with the neurologist. We also discussed my current visits to the chiropractor & massage therapists (now 2x weekly). Of course, he knows of my knee replacement. After a while he just kept saying " it makes sense".


He asked about the meds my doctor had prescribed and liked that the doctor was starting the baclofen slowly. My lyrica (100 mg) and cymbalta (60 mg) are also at very reasonable levels.


I understand that neurology is not his speciality but RDB left me feeling that I was getting very good treatment with my existing doctor.


I also sent a text to JC, one of the massage therapists I used at my former chiropractor. I saw him at least 2x month for about 2 yrs.


Now JC is very alternative medicine and I was afraid of what he would say even though he regularly commented that the "muscles in my legs were like steel cables" and "I don't know how you are able to walk".


To my surprise JC's comment was "Wow, that actually makes sense. Did he put you on meds?"

Diagnosed @ 51 - What Now?

Yesterday, I went for my 2nd follow-up with my neurologist for treatment of Chronic Pain Syndrome. We discussed the increased tightness of muscles in my legs and butt. We moved to an exam room & he re-tested my muscular reflexes and had me walk for him & then walk one foot in front of the other. Wow, I couldn't walk a straight line & kept reaching for the wall to my right.

We stepped back into his office where he proceeded to tell me that my reflexes had changed drastically since my original appointment August 2011. He then pulled information re spastic diplegia and started asking me questions about my childhood. Did I walk normal? Run normal? Was I clumsy?

We discussed my current medications (lyrica & cymbalta) and he added a Rx for baclofen. I'm starting on it slow - 5 mg. (up to 20 mg.) x4 daily. On the way out, his nurse handed me a printout on Spastic Diplegia.

On the way to work, I glanced at the printout. I was so surprised that the first sentence said "form of cerebral palsy". What? I'm 51!

After the shock, I continued to read and some things in my life began to make sense - especially my double knee replacement at 45. We could never come up with an injury in my past that would explain the damage to my knees. I was bone-on-bone on the inside of both knee joints.

It would also explain how quickly I was able to recover from the surgery. My muscles just tightened up & pulled everything together! I left my 4 week follow-up appointment with permission to walk without a walker or cane. The surgeon was amazed!

My mom insists I had a normal childhood. I was delivered after only 4 1/2 hours of labor. Walked at 12 months, talked at 13 months. Ran & played like all the other kids. And most importantly, she insisted, my pediatrician was very thorough. My only medical problem was a kidney that didn't function from birth & was removed at age 4.