[Joyce]

There is a new alternative to DBS. It is done by focuses ultra sound-no cutting.See info at University of Maryland

[Joyce]

Midodrine is a prescription medication which the doctor can prescribe to tighten blood vessels but the person cannot lay in bed all day as it will cause high blood pressure,.Thermotabs is a buffered salt supplement I get from Amazon which will not irritate the stomach, 5-10 times a day. A wrist blood pressure unit does not function properly when taking bp of a PD person. Compression socks are a must! Again-Amazon. I did not tell the doctor but I cut the feet off in the summer because sometimes I like to wear them all night in the event I have to go to the bathroom and they make my feet to warm. A waist compression band is also a must-Tommie Copper is excellent. I purchase -Amazon- powdered Gatorade, mix it, and drink it all day. I first had this happen when I started oh PD medication.Found out what it was, treated it as described and it went away. In July I could not get out of bed and was rushed to my neurologist – it was back again after 3.5 years but with out the dizziness so I did not know what was happening.Saw him this week and he said I did very well only dropped 4 pt! My problem now is I have absolutely no stamina and do not leave the bedroom. He said it is not PD but the fact that I have isolated myself. I was also having trouble with extreme fatigue and had a sleep study done which took six months as a result of COVID backlog=38% sleep efficiency, now have CPAP machine. Still no stamina! Hope some thing here helps.

[Joyce]

I am on their email list and have been receiving posts. I was exited in the beginning but have come to believe we should not be excited. They are conducting research out of the US on what basically appears to be given to one person at a time. The person has to pay all expenses-travel, lodging, etc. I do not think it is a hoax but it seems like an unorthodox research approach. The emails are promising and exciting but I have talked to a representative and it is not what I thought it was. I was asked to spend two weeks in the Virgin Islands or Mexico and I had to pay.

Hope this helps.

[Joyce]

Hi Paolo,

I had severe fatigue-still do, working on it. However, I asked for a sleep apnea test from my primary care doctor. I was functioning at 38% sleep efficiency with extreme exhaustion. It took six months to get this all done. Received a CPAP machine-no longer exhausted but I have no energy at all! Been house bound/ bed bound since July 1. Neurologist appointment next week.

Originally doctor said to drink coffee, which I do not, so he said caffeine pills. See if that helps you.

[Joyce]

Hi Gale,

I was very happy to read your response. I would like to know if you take any medications for your stomach issues that may help-either prescription or over the counter. I too have tried the blender routine and the avoidance of spicy foods, some days are better than others.How was your H.Pylori found-did you have an endoscope? This stomach issue is draining me of all my energy, constantly having daily problems. Did your neurologist offer any suggestions/comments that were of value? What liquids have you removed that have helped.I so look forward to hearing what you have learned because  you are the only one I know of you is experiencing symptoms similar to mine.

Than you so much!

Joyce

[Joyce]

I am convinced there is a connection even before PD presents itself. Twenty years ago I  had an upheaval in my personal life which resulted in the loss of 30 pounds and IBS-D.  This eventually resolved as the emotional impact of the situation resolved. I was diagnosed in 2015 with PD. In 22021 my sister was diagnosed in July with a heart condition after going too the hospital with covid. She died six months later Christmas weekend at the age of 85. As soon as the funeral was over my stomach began to hurt and I couldn’t keep food down.I ending up gaining 25 pounds due to the fact all I could keep down was bread of potatoes.

After testing for gastroporesis,which was negative, I had an endoscope after six months of vomiting and visits to both my gp and neurologist (who said the levodopa was causing the nausea so he gave me  additional carbo which made me sicker. I now have what is called antral gastric metaplasia, which is a condition in which the lining of the stomach has metamorphosed into the wrong tissue lining. I continue to suffer and my gastro doctor has indicated the lining will not change back. I am using antacids, probiotics, and a prescription drug. No alcohol, spicy foods, and carbohydrate such as bread and potatoes. However, I am physically drained because I either cannot fall asleep or wake up with GERD in my throat in the middle of the night.  This condition is usually  caused by a H.pyloric bacterial infection which I did not have.

[Joyce]

It definitely sounds like orthostatic hypotension, Use a blood pressure machine. Take your pressure sitting, then standing, remain standing and take bp again after 3 minutes. Typically bp will drop 10-20 units, mine dropped 50! Talk to your neurologist or heart doctor.

The reason fainting occurs is to overcome gravity so blood flow can return to normal.

1.Important to stay hydrated.

2.Dr. can prescribe midodrine, this did not work for me because I experienced side effects.

3.You can instead use salt tablets-3x a day (I took it more times).

Eventually you will be able to feel your bp  is dropping, I would feel light headed so I know I had to immediately at minimum hydrate.

Thankfully, I no longer have a problem!

[Joyce]

I met a woman at Parkinson’s class who had lost a daughter, I am reading about the woman who had problems after delivering her third child, I remember being doubled up on the floor in stomach pain, later diagnosed as IBS  and losing 40 pounds, after finding out my husband had been unfaithful after 30 years together.  How many of us have experienced situations which caused severe emotional stress which in turn set off our digestive system and 15-20 years after the event developed Parkinson’s. I had no toxic exposure that I know off-just extreme emotional distress.

[Joyce]

Hi Beth,

Sorry I missspelled it:

orthostatic hypotension

Try to cut, copy, paste, theses links:

https://www.multiplesystematrophy.org/about-msa/neurogenic-orthostatic-hypotension/?gclid=Cj0KCQiAqdP9BRDVARIsAGSZ8AkP26q4XlIHf1JwURNWdOP7z7HRbdiz5aXd6TD_VlpB-wN-hhZs9nMaAnt_EALw_wcB

THE MIDODRINE MEDICATION ALSO MADE ME SICK ITSELF-HAD TO STOP THAT ONE TOO>

https://www.mayoclinic.org/diseases-conditions/orthostatic-hypotension/symptoms-causes/syc-20352548

https://www.ninds.nih.gov/Disorders/All-Disorders/Orthostatic-Hypotension-Information-Page

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2888469/

https://www.accesshealth.tv/category/episodes/                                                        SECOND ROW LEFT BOX

Also, the medications/Parkinson’s may  cause:

Supine Headaches which I kept blowing off as my normal migrains.

 

[Joyce]

I was diagnosed in 2015. Started Levo/Carbo as did you Beth in January 2020. Long story short, after 3 months of “dizzziness” , the loss of 25 pounds, 2 trips to ER, 2 to GP and finally 1 trip to my neurologist, whom I had been unable to see due to the fact that during that time he suffered at heart attack at the ER, died,  and was brought back to life, he diagnosed me just by looking at me from across the room. I had severe orthostatic hypotension. Normally a 10 point drop causes the dizziness, he gets very worried at 20 points. I was dropping 50 points every time I stood up. Did your doctor check you? I could write a book in this box. I also have always had problems with medications my entire life.

As far as sleep goes, also had  sleep apnea which I no longer have. I take 10 mg of melatoin. I am presently using Nature’s Bounty Sleep 3 which 1. has a calming effect  from L-THEANINE 200mg, quick and slow release melatonine and a 50 mg herbal blend.Stay away from the Ambien-it was orginally prescribed by doctors at to high a dosage and caused many problems. The dose has been lowered but it is not for long term use.

[Joyce]

Sorry it took me so long to get this going but there is a real connection to the salt and staying hydrated. The salt is why she is swollen. Keep feet elevated when possible and the doctor can prescribe compression socks but they are about 30.00 a pair,difficult to  put on an I usually poke me thumb threw them.  I have not tried them yet but  go to www,CollecctionsEtc.com. and look up diabetic crew socks 2-pairs for 9.99.They are loose, short socks and may help.  Real comprehension socks come up to the knee and come in different pressures. Also try Tommy Copper. HSN and /or QVC also sells some. Look on You Tube for a video on how to put the long ones on.

Joyce