(1) Thank you for seeing my father this coming Tuesday, 16th February 2010, for consultation on potential pharmacological intervention for my fathers Parkinsonian symptoms.
(2) Please be advised that through the assistance of Ms <---->, you will also be seeing my father the following day, on Wednesday 17th February, 2010, for botox injections for my father's body rigidity.
My name is <----> and my father suffers from a broad range of Parkinson's like symptoms. He in fact has all the cardinal symptoms of PD, but has been unresponsive to Levodopa.
I have had a very frustrating time finding help for my father, apart from Dr <---->, my father's Rehabilitation specialists, who has also tried in vain to find a Parkinson's Syndrome specialist willing to try and treat my father. The neurologists I have so far seen have only suggested Sinimet and nothing else.
I am asking for your assistance as a Neurologist specialising in movement disorders for (i) assistance in trialling other pharmacological medications that may provide some minor to moderate relief of my father's most troublesome symptoms, and assistance and guidance on botox and its potential application to assist in my father's rigidity, body pain, tremors and/or freezing.
I do understand from the out-set that my father's condition is atypical Parkinsons, and his circumstances may rule many potential treatments out. This is not an ideal case because my father does not suffer from idiopathic Parkinson's disease , but I beg you to please help us to sequentially trial some treatments that may modestly alleviate some of my fathers most inhibiting symptoms. A modest response would make a huge impact to my father's quality of life, and this is all we are expecting.
Some important history regarding my father's condition
Overview of History
- Road Accident: April 2002 - prior to this perfect health
- Traumatic impact to top-side of head (right-side). Mid-line shift, bleeding in brain observed, fracture at base of skull. No surgical intervention.
- Induced coma for 6 days
- 6 weeks in hospital. Had to re-learn to swallow, talk and walk again.
- 2 weeks after accident started to experience Sundowner Syndrome. Significant sleeping problems.
- Improvement generally observed over next 3 years, although ongoing mobility and balance issues.
- From 2005 onwards condition started to slowly deteriorate.
- From about 2006, Parkinson's like symptoms became visible. These were noted by medical specialist as far back as 2005, although they were quite subtle back then.
- Over past 6 months, rapid increase in severity of symptoms.
The two most problematic symptoms are;
(1) Mobility problems, comprising:
1. General weakness in leg muscles
2. Rigidity in muscles, most noticeably calf muscles, neck muscles and trunk of body.
3. Stiffness and pain in calf muscles. Experiences ongoing pain in calf and waist/abdomen/lower back
4. Slowness in movement
5. Freezing, especially in left leg when attempting to take first step
6. Festinated pace of walking
7. Shuffling of feet (small dragging steps)
8. Gait - pronounced leaning forward and head down
9. Impaired balance - cannot gauge back and forth movement
10. No arm movement when walking
(2) Cognitive issues
1. Increasing loss of mental alertness
2. Increasing forgetfulness
3. Increasing paranoia
4. General confusion
5. Orientation , gets lost within house
6. Frequently losing track of a word or thought
(2) Faecal Inconsistence
1. Lately can happen up to 3 times a day.
2. Is not aware of urge until just before it happens.
(3) Other symptoms which are problematic, but not as disruptive as above two
1. Left hand resting tremor (has been steadily increasing over past few years)
2. Loss of strength, nimbleness and dexterity in hands
3. Very low speaking voice- strangulation episodes at night
4. Urinary incontinence
6. Drooling - Saliva drooping from lip
8. Toned down facial expressions
9. Frequent nightmares involving body movements. Believes that he stops breathing during night.
July-2008 - Levodopa - duration: about 7 days - dosage from 400mg to 600mg per day. Stopped due to worsening of symptoms and hallucintions.
April-2009 - Artane 2 mg- 7 days duration - half tab per day. Stopped due to worsening of symptoms and cognitive issues.
Dec-2009 - Sinimet 100/25 - half a tab to one tab - duration only 3 days. Stopped due to worsening symptoms
Oct-2009 to Current - Two by 5 minutes of whole body vibration - no detected improvement in symptoms.
Jan-2010 - Nicotine Therapy (patches) - from 7mg to 21 mg over 24 hrs. Initial 7mg had immediate improvement for 5 days. No response since then despite increase in dosage, but 21mg seems to have created sleep disturbance.
Trial of cardilopa-levodopa never reaches some recommended therapeutic doses because of issue of tolerability
Thank you for agreeing to see my father on the 10th December, 2009. We look forward to seeing you then.
I hereby supply some further information to you prior to the appointment (along with a few suggestions and questions).
I hope you can take my suggestions as my effort at providing further information, rather than my trying to make medical decisions or pre-empt your expert advise. I hope you understand.
- You should by now have received a referral letter from Dr xxxxxxn (Rehabilitation Specialist, xxxxxx Hospital) with a clinical background of my father's situation. This letter was originally sent to Dr xxxt who was not available to see my father this year.
If you have not received this letter please advise me. If you have, could you please advise if this letter is sufficient as a referral letter?
- Although my father had previously tried Sinimet, due to a number of factors I do not believe that we tested this drug thoroughly.
With your agreement and support, I was hopeful that another attempt with Sinimet would be worth a try, at least as a first attempt, maybe for a longer duration, higher ultimate dosage, and/or in combination with other newly developed agonists or other ldopa enhancers.
- Four days after the appointment with you, we will be seeing Dr xxxxx for botox injections. One area that I am not certain about (although I have yet to discuss with Dr xxxxx), is whether botox may be appropriate to alleviate the stiffness in the trunk of my father's body.
I have already discussed with Dr xxxx the (i) stiffness in my father's calfs, the (ii) lower back pain my father has, and possibly the (iii) pain my father feels in the soles of his feet.
I however do not know whether botox can help with the generalised dystonia my father experiences in the trunk of his body and neck.
If it is possible, I would value any suggestions that you may have on the sites of administration of botox to assist in my father's tense muscles across his body.
- Please note that we are realistic about the progressiveness of my father's condition, and we are merely seeking some improvement in my father's Parkinson's like symptoms. Even a small improvement would make a big difference in my father's quality of life.
PS. I will bring with me the various brain scans that were taken subsequent to my father's head injury, and any other reports I may have. Please feel free to ask me for these if they will help in your assessment on the day.
##refer to surgical intervention for urinary tract scarring
##At the very least, my father's case would be a remarkable case study highlighting an indisputable link between direct and catastrophic head trauma and the development of of post-traumatic parkinsonism.
I am writing to you after having read about you on the web, and after having heard about your well received speeches for a Parkinson's xxx support group on the pharmacological treatment of PD.
I would also add that if there is any possibility, my father would probably greatly benefit from a multi-disciplinary approach, given what looks like the onset of (i) depression, (ii) modest cognitive decline and the contra-indications of treating these conditions along with my father's advancing age.