Me and PD.

bilzmale

Super Moderator Emeritus
Jul 17, 2010
124
Perth, Western Australia
On a couple of occasions on this forum I've mentioned that I have Parkinson's Disease (PD). I was diagnosed in 2013 but have probably had it for at least 10 years.
I want to share some of the insights I now have by posting here once or twice a week. My intention is to keep it pretty light.

I'd like to start with two early symptoms/warning signs that I missed.
1. I began to lose my sense of smell. My wife, Rosemary, is a human bloodhound when it comes to odours and here was I confident that my f*rts didn't smell anymore.
2. I don't swing my arms when I walk. Once again Rosemary would tell me "Swing your arms, people are looking at you funny".

It may be useful to know this information for yourself or a friend.

Please feel free to react to this thread and comments would be welcome. That's it for now.
 
Jul 24, 2013
104
Memphis, TN
Appreciate you being transparent about this. I have loss of smell, tremors, and balance issues. I saw a neurologist about 18 months ago who was so convinced I had PD that he placed me on a clinical trial. Part of the trial was having a DAT scan which measures dopamine, which I'm sure you are aware. Came back that rather than having no dopamine transmission, I have a minimal amount. This placed me in a category labeled 'SWEDDS' which is an acronym for 'Subjects without evidence of dopamine deficit syndrome'. This Parkinson syndrome was discovered once Levodopa became a standard of care. Apparently about 20% of previously diagnosed PD patients had no response to the Levodopa. Clinical research eventually isolated the syndrome. So will I eventually have full PD? Stats reveal about 20% diagnosed with SWEDDS will go on to full PD usually between the ages of 65 and 67. I'm 65. The numbers are in my favor unless I move into the 20%. Time will tell.

The smell doesn't bother me too much. I have to be careful or I will drift, while walking, into a wall. I drop things so I now use a stand for my IPad when I'm doing a presentation, wedding, or speech. I wear a camera strap now to keep from dropping my camera. My biggest PITA is muscle stiffness and pain along my shoulders, down into my arms and fingers. I could pop NSAIDS like candy but avoid doing so to protect my stomach. Getting older and having medical issues isn't for sissies!
 

Briar

All-Pro
Oct 27, 2010
124
Scotland
As mostly blokes visit this forum I think it’s great that you are sharing your PD story here.

Blokes are notoriously bad for ignoring health changes and even worse at visiting a health professional to discuss them. Why is that?? Anyway, if you encourage them not to ignore signs and symptoms all is good.

As always your witty observations make me chuckle. Keep at it!
 

bilzmale

Super Moderator Emeritus
Jul 17, 2010
124
Perth, Western Australia
Today I want to talk a little about dopamine. It is a neuro-transmitter(chemical messenger) produced by our brain. It allows information to be passed from one neuron or brain cell to another and controls pretty much every aspect of life including movement, memory, pleasurable reward, behaviour, cognition and many others.
Elevated dopamine levels are present in pleasurable activities like eating and sex as well as addictive patterns (like GAS). They are also responsible for uncontrolled movement disorders like facial tics and Tourette's and found in many psychotic disorders.
Decreased dopamine levels are found in bored students. Teachers, you need to make new information relevant and interesting or it will not be learned. This reminds me of the definition of a uni lecture as a process where information from the lecturer's notes is transferred to the student's notes without going through the brain of either.
PD is a bit more problematic because the dopamine-producing cells actually die. I've heard that as much as 80% of these cells may have died by the time of diagnosis partly because of brain plasticity or the ability of our brains to relearn new coping strategies.
Next time I'll talk about treating PD.
 

bilzmale

Super Moderator Emeritus
Jul 17, 2010
124
Perth, Western Australia
The main medication administered for PD is levodopa or L-DOPA. It is converted to dopamine in the body and was first lab-tested on animals as far back as 1950. L-DOPA can cross the blood/brain barrier whereas dopamine itself cannot. To prevent dopamine being created in the peripheral nervous system (which would exacerbate motor problems) L-DOPA is combined with another drug to limit production to only the central nervous system.

Two Nobel prizes have been awarded for work in this area, Medicine in 2000 and Chemistry in 2001.
 

davect01

Hall of Famer
Having had a Grandfather and Father with P.D. I follow the news quite regularly. There are some great advances being made but there still is no proven cure. This one seems very promising though:
New Treatment May Have the Potential to Slow, Stop, or Reverse Parkinson Disease

I commend your commitment to continuing to stay active. So many just give up. Keep at it and keep sharing what you feel you want :)
 

bilzmale

Super Moderator Emeritus
Jul 17, 2010
124
Perth, Western Australia
Having had a Grandfather and Father with P.D. I follow the news quite regularly. There are some great advances being made but there still is no proven cure. This one seems very promising though:
New Treatment May Have the Potential to Slow, Stop, or Reverse Parkinson Disease

I commend your commitment to continuing to stay active. So many just give up. Keep at it and keep sharing what you feel you want :)
Thanks for that link Dave. It is a bit intrusive but it seems to be an effective treatment. As mentioned in my post the blood/brain barrier needs to be crossed hence direct infusion is a promising technique.
 

bilzmale

Super Moderator Emeritus
Jul 17, 2010
124
Perth, Western Australia
I've read a few articles here and there about marijuana use in PD, I do mean that from a medical treatment perspective. Is that something you might want to try?
Yes I'm aware of some of the claims - nothing credible that I've seen and I'm wary of 'snake-oil' salesmen. Given a medically supervised trial I'd be in.
 

davect01

Hall of Famer
Yes I'm aware of some of the claims - nothing credible that I've seen and I'm wary of 'snake-oil' salesmen. Given a medically supervised trial I'd be in.
I've read a few articles here and there about marijuana use in PD, I do mean that from a medical treatment perspective. Is that something you might want to try?
The use of Marijuana by P.D. patients is merely a symptom calmer. Some have used it and it seems to reduce the tremors. My father tried it for about a month and a half and it did a little bit of good but nothing major.
 

bilzmale

Super Moderator Emeritus
Jul 17, 2010
124
Perth, Western Australia
Time for the next post - if you haven't worked it out my plan is to post on Tuesday and Friday.

PD is a movement disorder and is not a mental illness. That said anxiety and depression may develop as PD progresses. It is movement issues that provide visual clues of PD that others may recognise. Not all of the following list are present in an individual with PD nor is the 'severity' of these symptoms the same.

Muscular rigidity or stiffness including the face which might lack expression.
Tremor particularly in the hands which persists at rest and may lessen when doing a task.
Flexed or stooped posture.
Shuffling walk, often with reduced arm swing.
Slowness of movement and 'clumsiness' with routine tasks like dressing etc.
Falls are more likely.

As obvious as these observable, external symptoms are they are really the 'tip of the iceberg'. More about non-motor symptoms next time.
 

davect01

Hall of Famer
Time for the next post - if you haven't worked it out my plan is to post on Tuesday and Friday.

PD is a movement disorder and is not a mental illness. That said anxiety and depression may develop as PD progresses. It is movement issues that provide visual clues of PD that others may recognize. Not all of the following list are present in an individual with PD nor is the 'severity' of these symptoms the same.

Muscular rigidity or stiffness including the face which might lack expression.
Tremor particularly in the hands which persists at rest and may lessen when doing a task.
Flexed or stooped posture.
Shuffling walk, often with reduced arm swing.
Slowness of movement and 'clumsiness' with routine tasks like dressing etc.
Falls are more likely.

As obvious as these observable, external symptoms are they are really the 'tip of the iceberg'. More about non-motor symptoms next time.
The mental condition can radically change though throughout P.D. but with much of this, patients respond very differently.

Obviously, depression can be a major part of P.D. as patients are dealing with a long process of deteriorating physical abilities. Facing P.D. is hard, especially if you do not have a strong support system.

Two mental changes that can occur is that 1- Many P.D. patients start to have a hard time making rational choices and 2- Many P.D. patients lose some of their ability to feel emotions. Both of these are caused by the Dopamine system not working properly and adds much additional strain to an already difficult situation.

Why do Parkinson's Disease Patients Sometimes Make Wrong Decisions? - PubMed - NCBI

I highly recommend that the entire family attend some counseling with a counselor who understands this condition so that they can be prepared (as much as you can be) for the changes coming. When my Grandpa had P.D. I was not directly involved with his care and would see him a few times a year, shocked with the changes. With my father, I was still living at home and was for that first year after diagnosis. We, (my two parents, myself and my two brothers), attended several group counseling sessions and we were able to get some more detail and support about what to expect. This was a wonderful few sessions as the counselor was able to discuss the future and our concerns in a much better setting than in a doctors office.

Keep going, my friend.
 
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bilzmale

Super Moderator Emeritus
Jul 17, 2010
124
Perth, Western Australia
Dave, you are absolutely right. I will discuss some of these issues in my next post. I was referred by my GP to the 'top' neurologist here in Perth. All of his 'treatment' was based on medication and I was referred to a local support groups website if I wanted more info. In January I was "fortunate enough" to have my first fall and a visit to Emergency for some stitches.

I say fortunate because the Government hospital I was at has a protocol for over 65s who present after a fall. This included a chat with an Occupational Therapist who asked if I'd like to be referred to the Parkinson's Clinic at Fremantle Hospital. In the last 2 months, I've had a range of free support as part of this holistic support service. This included sessions with a Nurse Specialist, Neurology Registrar and the Neurologist, Dietician, Physiotherapist (twice), Speech Pathologist (3 sessions), Psychologist (2 sessions), Occupational Therapist (2 sessions) and a Social Worker. I also start a 10 week, twice weekly community-based gym/physio program next week.

I and my family are now well informed - something very lacking in the private, expensive 'treatment' I was getting. I have switched my treatment fully to this public and free system.

It's also why I have embarked on this little project here.
 

davect01

Hall of Famer
Dave, you are absolutely right. I will discuss some of these issues in my next post. I was referred by my GP to the 'top' neurologist here in Perth. All of his 'treatment' was based on medication and I was referred to a local support groups website if I wanted more info. In January I was "fortunate enough" to have my first fall and a visit to Emergency for some stitches.

I say fortunate because the Government hospital I was at has a protocol for over 65s who present after a fall. This included a chat with an Occupational Therapist who asked if I'd like to be referred to the Parkinson's Clinic at Fremantle Hospital. In the last 2 months, I've had a range of free support as part of this holistic support service. This included sessions with a Nurse Specialist, Neurology Registrar and the Neurologist, Dietician, Physiotherapist (twice), Speech Pathologist (3 sessions), Psychologist (2 sessions), Occupational Therapist (2 sessions) and a Social Worker. I also start a 10 week, twice weekly community-based gym/physio program next week.

I and my family are now well informed - something very lacking in the private, expensive 'treatment' I was getting. I have switched my treatment fully to this public and free system.

It's also why I have embarked on this little project here.
The mental and emotional toll on the family is part that is not well discussed.
 

bilzmale

Super Moderator Emeritus
Jul 17, 2010
124
Perth, Western Australia

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