[rick-m]

Yes, I’ve read about it.  There’s some great YouTube videos posted.

It has promise for PD but PD is not their initial focus and they are years away from FDA approval on anything.

Maybe a push from MJF foundation might help them focus more on PD?

[rick-m]

I won the lottery.

I was diagnosed with PD in 2017.
After the last two years wrestling with Idiopathic Neutropenia (low neutrophils with unknown cause) I was six months ago diagnosed with MDS which is a form of bone marrow cancer.
Two months ago was diagnosed with breast cancer which is unrelated to my other cancer.

Presently in chemo for MDS and in recovery from a Mastectomy on Monday while continuing with my Parkinson’s medications. Exploring getting a bone marrow transplant for my MDS.

Sleeping much better this week with the pain meds combined with Clonazipam.:>)

[rick-m]

I live in Phoenix, Az and as my PD progresses it seems that I get more and more fatigued by the heat.  I get tired just walking outside and it’s getting worse.

I have air conditioning and I go inside to cool off.  (or jump in the pool)

[rick-m]

No, but always have lots of liquids available to help with swallowing.   Take a bite, have a drink….

 

[rick-m]

Yes, I was experiencing tinnitus before being diagnosed with PD.

Lost my sense of smell first.  Ears started feeling plugged and then after several years the ringing started.

Was diagnosed with Meniere’s disease at one point.  Then was diagnosed with hearing loss which they said caused the tinnitus.

Was diagnosed with Parkinson’s several years later because of trembling and walking issues.  No one has ever associated the tinnitus or hearing problems to Parkinson’s.

Note that I also have chronic B12 deficiency and chronic neutropenia which they think is caused by an autoimmune disorder and they say is not related to my PD.

[rick-m]

Hi Andrew,

So you feel that the benzodiazepines makes you more groggy the next day than vaping THC at 2 A.M.?

My biggest concern with THC is grogginess/being spacy  the next day

Thanks

[rick-m]

My major challenges are chronic fatigue and restless sleep; sometimes waking up in the middle of the night and waking up early in the morning and not being able to go back to sleep.

My experience with recreational use of marijuana when I was younger was fatigue and foggy head the next day so I would be reticent to start using for sleep as I fear it would aggravate my chronic fatigue.

For my restless sleep, I do take .25mg of Clonazepam ( a benzodiazepine) nightly for sleep which seems to help.  My doctor prescribed .5mg. but I only take half of that.  I am surprised I only saw one other reference to  benzodiazepine in this thread.

There has been some articles about the risks of benzodiazepine but my neurologist who specializes in PD highly recommended for restless sleep.

 

[rick-m]

I was diagnosed with PD in 5/2017.  No B12 testing was done.  But later was found to be 207 which is below the low range of 232.

As part of a normal physical in 7/2018 my blood tests showed low white blood cell count and low neutrophils. ANC 1.05, WBC 2.5.  Went to a hematologist who did a B12 test and B12 was very low: 207.

Over the following year I have been diagnosed with Asymptotic Neutropenia and am on weekly B12 shots.  My B12 is now regularly >800 but my low ANC continues to swing between 400 (danger zone) and 1.7 (almost in acceptable range?

All my doctors — hematologist, Parkinson’s doctor, and primary care physician —  have told me this has nothing to do with the Parkinson’s but have no other clinical causes to attribute it to.  Interesting that there is indications that it is correlated to my PD.