I am really impressed with how well Todd is doing. He really has made such a dramatic recovery. It really gives us hope that if you have CPM, you can make great strides. So, Todd developed CPM in December of 2007/Jan of 2008.
Please see his story regarding the progression of his injury.
The following is a series of questions and answer regarding his symptoms:
I think your “addiction” to cycling is fantastic.
I am trying to do everything in moderation.
I hope you are doing well. If you can, if you can give a detailed account of your experiences to date. It seems like you’ve made a great recovery. Do you attribute that to anything? Any certain treatment? Any medications?
Deep down inside of me, I really believe it was God’s way of telling me “You have had enough scotch and Copenhagen”, although I have relapsed once one scotch and twice on beer, never on Copenhagen. I once asked a X-Camel Straight smoker (may he RIP) after 17 years nicotine free if he ever missed it? His verbal response was kind but his nonverbal wanted to rip my head off for asking such a stupid question.
The only medication that may have made a difference was the Carb-levadopa. I was on that until I saw Dr. Bajwa, the local Parkinson’s expert, we weaned me off. (Jan 2008-Sept 2008). He also diagnosed me with the Parkinsonism. I have a functional left hand that has issues with a now overextended thumb. I do not know if it was because of the CPM or the nasty restraints that I had to wear in the hospital. At the time, I could not communicate, but I was extremely worried I was going to lose function in my hands because of the restraints.
Do you have any ongoing issues with movements? like cramping, spasms, jerks, etc. Do you have any ongoing issues with memory, concentration or learning? How about issues with vision, heart rate, hearing? Do your symptoms remain constant or do they come and go?
Cramping from my spinning. Early on I had slight issues with memory. While in the hospital, I always saw a yellow hew. I have a constant ringing in my ears, which I do not think is CPM related. I do experience thoratic pain some nights. My bum left hand also experiences a dull pain and stiffness. My facial expression is always straining and I have a constant primitive noise that I make and I stutter when excited.
Do you do any therapy or did you do so after being released from the hospital?
I did Occupational, Physical, speech and recreational while at Bethesda. I continued with speech for an additional 3-6 months going through 3 therapists. Last summer I spent $ to get a 4 year/40,000 mile tune up with the last and best of the 3 speech therapists. Everyone tells me my speech is fine, but that is B as in B, S as in S.
Have you met any doctors that have helped with your condition, neurologists/ GP?
I haven’t seen a neurologist since Bajwa, to get off the Carb-Levadopa. I take the mini aspirin, B-complex, Multi-Vitamin, chondroitin and glucosamine.
Have you experienced new symptoms or have you had continuous improvements?
I only thing that may be new is the pain in my left hand. I started doing what I call “old folkies” yoga in 2008.
“Old Folkies” because at 52, I am the youngest there. Recently I am trying to do “Real” yoga, “real” because I am the oldest there. Also am trying to do core and muscle classes at last 2 times a week striving to reach 3-4X a week. I DEFINITELY do feel better exercising (just do not tell my Life Partner).
Have you met any new people with CPM/EPM?
I have personally met M, which was fabulous. It was like a first date: seemed like less than a minute in over 2 hours. I have wanted to go and meet D (about 20 minutes from my Mom) but didn’t pursue that.
Did you have any treatments immediately following the injury? Like, hyperbariatric treatments, plasmaphoresis, anti inflammatory meds?
The only thing I can remember is the Carb-levadopa and Multivitamins.
Conversation continued (Sorry about some repeats, I didn’t remember asking the questions before):
Do you have issues with understanding with verbal directions or written directions compared to what might have happened prior to the injury?
No, I always had and still do have a great sense of direction.
Do you forget stories or movies or articles or recognize faces but forget the plot?
No, if I did, it would be more age related.
Do you have jerks and twitches?
Do you have issues sleeping?
I do have sleeping issues that I am trying to figure out without seeing a Doctor. In a perfect world, I need 6-7 hours of sleep. I use to wake up to my life partner coming to bed—I sleep through that now. I have been going to bed at 10:30 and waking at 4:00. I have finally decided I am going to get up at 4:00 and try not to nap. I have a clean conscious—If tired, I can fall asleep anytime anywhere in an instant.
Do you find yourself easily distracted?
Have you had issues with managing your finances, forgetting to pay bills or paying them more than once?
The only issue that I have had: We took some money out of an IRA to pay for college tuition. Forgot to tell my accountant.
Do you need help doing any daily activities, like grocery shopping?
No. Although everything is more difficult to do: Dressing, tying shoes, cooking.
Have you had irregular heart rates?
Have you had hallucinations?
Have you had any blackout periods?
Have you had any weight gain?
Have you had any issues with visual problems with blurriness?
(Ringing of the ears does happen with CPM/EPM. It’s a form of tinnuitis. I have it in my left ear. It’s not daily. It comes and goes, but it can be rather painful when it does happen).
Mine is not painful.
Have you had issues with smelling?
Any hormonal changes, like low thyroid?
Issues with making impulsive decisions?
Issues with writing (typing or handwritten) such as cramping in hands, tremors, etc?
I cannot write legibly anymore although only one check has been returned. A bill comes; I immediately make out a check—old school.
Any issues with swallowing?
No. more so with chewing.
Any issues with understanding what someone is saying to you?
I am a recovering alhocolic.
Numbness and tingling?
In my left hand—I swear it is because of the hospital restraints.
Balance or coordination issues?
Have you noticed any new symptoms developing or anything that got better but is now getting worse?
It sounds like overall, except for a few minor speech issues and movement issues, you have completely recovered. Do you feel that is a correct summary? Oh, and in regards to directions, I wanted to clarify the question….do you have issues if someone tells you something verbally, like a new procedure at work, would you have difficulty remembering the task or understanding the directions? Oh, and how long overall do you feel it took for you to make the recovery to this point? Was it a matter of weeks, months? Oh, and what area of the brain was impacted? Was it the pontine area or the basal ganglia area? And how long has it been since the injury again?
I have the drooling and grunting issues along with my bum left thumb, also. I am graciously, graciously, graciously……..thankful for my recovery, but I would not use the term “completely”. I have no issues following directions. I think it was the pontine, honey, is that right? My life partner has to do the timeline? I have no clue–we did 2 days of Tour de Kota on 2010 and in 2012 we did all six. I was diagnosed with CPM in December 2007/January 2008?
Thank you, Todd!!! I hope that I can get more information regarding real life experiences with CPM/EPM. I think it might be an important reference for doctors who want to know what a person lives with after they leave the hospital. With Todd’s help, I’ll keep you posted of any changes and improvements that he experiences, but regarding this injury, he has had the best recovery, and he didn’t have any treatments except cognitive and speech therapy.
Please feel free to contact me with any questions or comments, and I will get them to Todd or try to find an answer for you.
Update: Some information provided about how life has changed for Todd since his injury according to his significant other:
Well, to elaborate just a little more, the event happened right before Christmas of 2007 and the way it was explained to me was that the demyelination of the myelin sheath doesn’t allow the nerve signals to properly transmit, therefore causing the symptoms of speech he has described. Believe that would be the basal ganglia. I would say those issues are considerably more difficult to deal with than “minor”. Sometimes speaking is quite labored and will often cause him to speak very little because of the strain. You can visually see the strain on his neck muscles when speaking. The grunting is mostly in the am upon waking before his body becomes accustomed to regular movement. That is why vigorous exercise demonstrably improves the situation and remains a vital component to his continued recovery and/or keeping him where he is at in the recovery process.
I believe that the recovery has been slow and steady ever since the event occurred.
Thank You for input, Linda. I think that is really good to know. I think an outside, yet personal, description of the experience is very helpful.