Some Advance Questions – Motor Symptoms
* Treatment for rigidity?
* Spasticity – treatment? pain relief?
* Are joint or muscle contractures the same thing as dystonia? Are there any preventative steps?
Rigidity (stiffness) includes spasticity and dystonia (artane). Medical treatments are Baclofen, for dystonia. Botox is most effective but there are medications. You don’t want to let the condition get to the point of contractures, because then it cannot be treated with Botox. There are orthotic devices (braces, etc.) that can aggravate rigidity.
* Can cerebellar ataxia (in MSA-C) be treated?
* CBD is one-sided. Are there any robotic devices that can be used to strengthen the affected side?
Currently, no. There is not weakness involved in these disorders, it is slowness and stiffness, best treated with Botox.
* What can be done about mutism? How can we communicate?
Try using a keyboard to communicate.
* Is there a treatment for the eye tracking problem?
There is specialized physical therapy to help overall coordination that can improve symptoms.
* How can we help someone clear his/her throat? Person is choking on phlegm and has a hard time coughing it up.
This is a risk for aspiration. Suction devices are available through your Dr. or physical/speech therapist.
Some Advance Questions – Non-Motor Symptoms
* Pain management? (lots of questions on this topic)
CBD and MSA have more pain issues. Get a pain specialist involved. Opiates may be required, but should be avoided due to side effects. Botox is still his go-to if cause of pain is dystonia.
* What about urinary incontinence? Botox for this?
It oftentimes does not work. Overflow incontinence is usually the issue. Undergarments and bedside commode is the best way to address this.
* Dealing with severe leg cramps at night
Tonic water has quinine in it that can relieve cramps. Everything you take has side effects so discuss with your Dr.
* Any suggestions for dental care as my brother’s mouth won’t always open?
The problem is probably a mandibular dystonia. Try Botox to relieve the jaw joint so you can provide dental care.
* How do we deal with stridor during the day?
Discuss with your doctor or pulmonologist. It can be due to thin liquid aspiration so treat drooling. Suction devices can help as well.
* How can cognitive problems be treated?
There are many areas of cognition. For Alzheimers they use Aricept, for parkinsonisms we use Exelon. To stay alert, try keeping goals for the day and keep track of what you’re doing, stay focused, use mindfulness.
* Do patients with these disorders hallucinate?
Not usually, that is usually LBD.
Some Advance Questions – Specific Treatments
* Does cannabidiol (medical marijuana) help these disorders? (lots of questions on this topic)
There are two parts of marijuana. CBD is the medicinal part which is probably most useful for relaxation.
* Stem cell therapy? (lots of questions on this topic)
Problem is getting stem cells into the right part of the brain. There are some ongoing studies into how to do this.
* Hyperbaric oxygen therapy?
Be careful! Always be sure what you are getting benefits you and not the therapy provider. You can use those financial resources to useful treatments. There is not benefit of Hyperbaric O2 therapy.
* Can vitamins slow the progression of disease?
* What about the Duopa Pump?
This is not indicated for MSA, CBD, PSP because they are not affected by levodopa.
Some Advance Questions – Resources
* What is the process and value of brain donations for research into these disorders?
Sharon tells us that Brain Support Network helps families to accomplish brain donation to benefit research into neurodegenerative disorders. About 50% of donating families found out through neuropathological analysis that their family member’s clinical diagnosis was incorrect. See brainsupportnetwork.org/brain-donation
* Is autopsy the only way to confirm a diagnosis? Can PSP, CBD, and MSA co-occur?
Yes, but with PSP the diagnostic accuracy is 80-90%, CBD and MSA also are about the same. Problem is part of the diagnostic criteria is urinary incontinence and in older men urinary issues of aging can confuse symptoms.
* How to find: movement disorder specialist or neurologist; PT, OT, or exercise instructor trained in LSVT BIG or POWER; speech therapist; social worker
LSVT Find a Clinician. LSVT focuses on amplitude of vocal sounds and gross motor movements. Also the APDA Information and Referral Center at Stanford.
* What is a DO? How is that different from an MD?
DO is doctor of osteopathic medicine. It is an MD with more of a holistic approach to medicine. They are very similar, overall.
Some Advance Questions – Specific Problems
* Can bladder training work if there is dementia?
Yes, it is more difficult. If there is dementia there is impulsivity. The frontal lobe communicates with your spinal cord, communicates with your bladder. In dementia the frontal lobe is impaired. Use absorbent undergarments.
* Can breath support be improved? (using the expiratory muscle strength trainer, for example)
Definitely, also consult a pulmonary specialist.
* Can mindfulness or meditation help with anxiety or depression? Even if there is dementia?
If there is dementia it will be difficult to get the person to cooperate. Dr. Bluett’s motto is to start with things that are less invasive with the fewest side effects, so try it!
* Is it possible to recover from impaired mobility via PT?
Yes, but it depends on the level of severity. If there is impaired mobility, augment PT with Botox. Botox weakens muscles because it can cause weakness and falls.
* If opiates affect cognition and cause hallucinations, what kind of treatment can be offered for pain relief?
Pain in these disorders is usually due to dystonia so Botox is first treatment, then other agents besides opiates.
* What are some common and easy exercises that the patient can do without fear of falling?
Here’s a simple one. Stand with your arms crossed. Someone should spot you so you don’t fall. Ask physical therapy.
* Which of these therapies are appropriate in the late stages? (Or, which of these therapies are not appropriate for late stages?)
Every treatment plan should be custom designed to accommodate their individual abilities. Speak with a physical therapist about this.
* Do all of these treatments apply to advanced Parkinson’s Disease? Lewy body dementia?
No. Parkinson’s and LBD show more response to levodopa.
* Are there any new drugs for non-motor symptoms in the pipeline?
Yes, there are lots of things – for REM sleep behavior disorder. There is not as much research into these, but there are some.
Some Advance Questions – Insurance
* Hospice and palliative care do not want to approve speech therapy or physical therapy. Should I argue with them about this?
Once you go into hospice they don’t want other interventions. It may be futile to argue with them. Let your doctor argue with them about it. We’re used to it.
* What can we do if the insurance company denies eye therapy?
We/your doctor can write a letter of appeal, PT can help as well.
* How to optimize therapy (OT/PT/ST) if we only get a certain number of sessions approved? What are the most important goals?
Prioritize falls and choking. Everything else is troublesome, but not life threatening.
Some Advance Questions – Other
* When should my family member stop driving?
With these diseases, early. There is concern about slowness of movement/reaction time, cognitive issues. There are driving evaluations at occupation therapy centers.
* Can medications affect cognition?
All of them.
* What matters more–my precise diagnosis or how I treat my condition?
Treating your condition. The precise diagnosis is academic.
* What can a caregiver do to help?
Caregivers should not put too much on yourself. He sees people literally breaking themselves. Talk to your care recipient’s doctor and a social worker to find resources to help.
* Is there hope?
Yes. Huntington’s disease is an excellent example where there may be a cure involving gene-modifying therapy. Research into all of these neurodegenerative disorders impacts all of them.
* What about vital-stem for swallowing?
It really does help!
* How is Pisa syndrome treated?
Try Botox into the extensor muscles of the back. It is very difficult to treat. Posture is hard to maintain, but caregivers should understand it is part of the disease.
* Are there assistive devises for speech?
Yes, going back to the keyboard. Speech therapists have great tips up their sleeves and great recommendations for this.