Having Parkinson's and Sex

Sexual Relations Can Change with Parkinson's Disease Symptoms

I never thought when I was younger and stronger that as I grew older I would be writing about sexual issues. Writing about sex maybe but not because of problems relating to sexual intimacy. However, I never thought that I would have Parkinson's disease either but I do.

The issues are unexpected because they relate to muscle strength, nerve endings, hand stiffness, coordination, inability to move easily while prone. In a limited way they relate to loss of my senses of smell and hearing. The changes in my voice affected her because she loved the sound of my voice. I am lucky that meds and exercise have salvaged some of the old tones and the ability to not speak in that PD monotone. The issues relate to what I understood about a sexual relationship.

Parkinson's patients have a much lower level of the neurotransmitter dopamine than they had before they developed the disease. Dopamine affects the whole body physically and emotionally. It especially affects communication since most communication is non-verbal and Parkinson's often brings change in speech, hearing, and facial expression. These changes can creates lack of effective communication between the PWP and his/her carer which can create many misunderstandings and frustrations. This can lead to an avoidance of talking and a possible failure of the relationship.

For many PD patients and their caregivers there is confusion about roles. Many caregivers are spouses or most significant others, who probably got that role without asking for it or wanting it. The woman who was my lover is now my carer; she is very smart and feels she needs to learn everything there is to know about Parkinson's. I would rather forget about PD cuddled against her . Feeling sexual makes me feel younger and alive. I can forget PD for a while. Since PD is a chronic condition, my PD isn't going to get better baring a cure. It becomes that "use it or loose it" thing and I panic then and forget about the kind of communication we need to be having.

Because I feel a sense of urgency about time and the need to communicate to work this out, I think, "first I must put my hearing-aid in. So much for that spontaneity." But then I hear her invite me to her room to watch TV...with the dogs and sometimes the cats. And she turns up the volume so that I don't need my hearing aid. And lights a few candles.

And I realize that letting go of the fears about what we will be able to do and accepting what we can do is a step I have been reluctant to take. What works best for us might not work for you but that's okay. If it is talking about limitations and then what is possible, then that works for you. If it is something else, you may need to find your meeting place.

The good young days may have passed but the good old days are yet to come.

Let's Do the Parkinson's Swing

Arm Swing Exercise for Parkinson's Disease

Since PD patients are often stiffer and weaker on one side in the earlier stages of PD, one of the things that suffers is gait which is somewhat dependent upon the arms for balance. If the arms don't swing, the stride usually shortens to compensate for the lack of shoulder and arm movement as well as the leg stiffness on the "bad" side. And of course, balance also becomes problematic.

Just telling yourself to swing your arms is not going to do it. You have to practice through exercise...regularly!

Sit in a chair - preferably a chair without arms - or one narrow enough that your arms can hang over the sides

Can you swing both arms? Together? In opposition?
If you can't, here's the exercise. You might need an assistant.
This is pretty simple but not necessarily easy.

If you have trouble, your assistant should hold the stronger arm in place while you work the weaker side.
Don't let the stronger side arm move. Just hold while the weaker-stiffer side performs the exercise once.
After the shoulder raises - the Shrug - is completed and the Forward and Back is also performed - release the arm

Get the shoulders moving first - we've done this before - the shoulders will help to propel you as well as provide balance.

Sit tall - head up - eyes forward
Raise the shoulders - let fall - raise both shoulders and let fall
Now alternate: raise the right shoulder only - let fall
Then the left shoulder: rise and fall
Together up and down - up and down
Shake it out

Sitting erect in your chair - head up - eyes forward
Swing your right arm front to back - reach back - swing forward
The shoulder will assist as it rises and falls with the swing.
Now repeat with the left arm

Next you will try alternate arm swing using both arms
Get the weaker side going first: forward-back-forward
Now the stronger side: forward-back
Keep the shoulders involved with the swing.

Now we're going to march in place with the arms swinging.
Sit erect - knees and feet comfortable apart for your march
(March them out now to that place)

Just as your assistant held your strong arm in place, if you have a problem raising the leg from the hip,
the strong leg should be held in place while you raise the weaker leg a few times. Release the leg

Lets March in Place.
Get the march going by raising first one leg from the hip, stepping down (heel first) and repeating with the other leg
Add the arm swing.

Music Maestro:
http://www.dws.org/sousa/works.htm
We're going to suggest the slower Wedding March for this exercise.
You might also like Riders for the Flag, Washington Post or the familiar Stars and Stripes Forever.

When you have completed your march with your arms swinging it is time to stand by leaning forward, rise from the chair
and march or walk down the hall or around the room.
Your stride goal is the one foot steps down a full foot length or more in front of the other.
If you have a freeze issue, your assistant must be ready with your key words to break the freeze and prevent a fall.

What we are doing with this exercise is similar to both the nautilus work favoring the weak side and the swim therapy marching with knees up and arms swinging except no equipment and no water.

The thing about Parkinson's is that unlike recovering from an injury or surgery, the body will stiffen again. These exercises must be done at least 3 times a week.

Did you know that 5-6 hours of vigorous exercise a week will raise the endorphin and dopamine levels? That should help ease some of your Parkinson's disease symptoms, however briefly.

Note: This is another in the series of exercises I designed to help Steve with his short stride. You will find that they are more strenuous than they might appear at first glance.
Marge

Parkinson's Disease: Cure or Treatment?

ProSavin - Will it break our hearts or Parkinsons?

I've had PD long enough to get caught up in the hoopla for several treatments that were susposed to be The Cure. Then something or other always happened to break our hearts. Either it just didn't work, or the company ran out of money, or it worked and the company went crazy -you know which one I'm talking about.

So here's another one that may or may not be the one but it sure sounds good so far. I've read about the potential for this gene delivery vector but just hadn't gotten around to writing about ProSavin. So thanks for the nudge, Ken, it's time to talk about ProSavin.

ProSavin is a novel gene therapy for Parkinson's disease. It was developed by Oxford Bio Medica in the UK. It is currently in Phase I/II trials in France. Phase III has been targeted to begin during 2009.

ProSavin makes use of Oxford Bio Medica's LentiVector(R), a benign virus modified to transduct specific genetic material into a cell. ProSavin is carrying three enzymes needed for dopamine synthesis: tyrosine hydroxylase, GTP-cyclohydrolase 1 and aromatic amino acid dopa decarboxylase. It is being tested with humans, for safety and efficacy with low dose and high dose trials.

Previously pre-clinical testing has show an almost complete recovery of movement function as well as metabolic and behavioral functions. The treatment has lasted for over 27 months without diminishing.

ProSavin was determined to be safe during the preclinical testing and caused no side effects even at doses hundreds of times higher than will be tested on patients.

Parkinson's is caused by the death of dopamime neurons (followed by the lowered production of norepinephrine neurons and serotonin depletion) leading to movement impairments and other symptoms. ProSavin restores dopamine production in the brain. Unlike other surgical procedures for PD which necessitate destruction of some brain tissue, ProSavin is administered locally to the striatum converting the nerve cells there into a replacement dopamine factory within the brain thus replacing the patient's own deteriorating source of neurotransmitters.

Patients in the trial must be failing on L-DOPA treatments, but will not have progressed to drug-induced dyskinesias. They are usually in the middle to late stages of PD.

The surgical procedure for administration of ProSavin is stereotactic bilateral injection into the striatum under general anesthesia, using MRI imaging and mapping.

The principal investagator is Stephane Palfi, MD, PhD, a neuroscientist and neurosurgeon at Henri Mondor Hospital and the Centre National de la Recherche Scientifique in Paris, who remarked, " Current standard theraphy for Parkinson's is only partially effective in the mid to late stages of the disease and can induce debiltating side-effects after long term use. ProSavin has the potential to address this unmet medical need, offering a long-lasting benefit from a single administration."

Those of us who currently meet the testing standards are hoping that Phase III will be initiated soon. It is good to have hope.

Sources: Parkinson's Disease Society, Dec 2, 2008
Oxford Biomedica: Press Release
11/04/2008. Novel New Gene Theraphy

Additional Information:
Dr Stephane Palfi
Hôpitaux de Paris, Groupe Henri-Mondor Albert-Chenevier, Service de Neurochirurgie
Créteil, F-94010, France