[Beth T Browne]

At 83 I found out I have Parkinson’s.  Learning symptoms, I think I had it a year sooner.  I discovered at 80, my father was not really my father.  I never saw him much as my parents divorced when I was 2.  When I did a DNA with Ancesory, and later with My Heritage, I discovered I was 49% Jewish.  I thought I was 1/4 Cherokee, since the man I thought was my father was 50%.  I have tried to find out things about my real father, but everyone is dead.  I did find a 2nd cousin, but she did not know anything about him.  So, now I wonder if PD ran in the Jewish side of the family.  I considered doing a 23& Me, which might tell me something.  No one on my mother’s side that I knew of has had this disease.  I have always been a vitamin taker, and never showed any problems when I had blood tests, until last year, when my potassium was very low.  Now I wonder about environment.

[Beth T Browne]

I did experience a sudden drop in my blood pressure, twice, before I was diagnoised.  It was mid-morn, and I had had breakfast both times, and was standing at my Ipad when I knew I was going to faint.  I immediately laid down.  It took me about 20-25 minutes, to feel good again.

I did not know anything about PD, except the shaking part.  As I have a leaky heart valve, I thought that was what it was and immediately sent a note to my doctor.  When it happened again, five days later, he wanted me to come in for my second electrocardiograph.  It came out better then my first, so he did not know what I had those sudden drops.  He never mentioned I might possible have PD.  So, I had know idea why that happened, at that time.

Now that I know, it is a bit scary  that I might be somewhere, like grocery shopping, and it could happen.  My hand shaking has been my big problem, but I now know I lack Dopamine.

 

 

[Beth T Browne]

I am 83, and was diagnosed in July of 2020.  My right hand had been shaking for a year.  I had been on thyroid for years, and suddenly, it appeared I got a bad dose, and ended up at the hospital.  Once I changed brands, the shaking got better, but never stopped.  My thyroid doctor suggested I see a movement doctor.  I was very shocked to learn I had Parkinson.  Sleep has been a problem since 2019, and I could not figure that out.  I have mild sleep apnea and use a mouth piece.  I could not handle the other.   I now take 1/2 of Benadryl and it gives me 5 hours.  I am small, and weighed 97/98 up until recently.  I was put on Carbidopa/Levodopa.  It made me so nauseous I could not eat much, so I got down to 90 lbs.  Then I had symptoms of Pancreatitis but it wasn’t that.  I had a CT scan and they found a mass on my left lung.  I am eating again, waiting for a report on the new CT scan I had this week, this time on my chest, as I am a 27 yr breast cancer survivor.  I have a new doctor, pulmonary.  He thinks it may be a mass from Bronchiectasis.  So, today I started taking Dopa Mucuna, not a prescription, at the advice of my movement doctor.  She said it is not as strong.  I am a month behind on starting something for my shaking.  I am praying this does not make me nauseous.  I think I may have had Parkinson’s since 2019.  My movement doctor said my brain was alright, but my short term memory is not good this year.  I know I am old, and memory due to old age is common, but how do you know if that is your problem.  I see my movement doctor Oct 1, so I will discuss that more with her again.

[Beth T Browne]

Thank you Karen for taking the time to let me know your life as it is.  I admire you greatly, as I know taking care of someone who has a disease is extremely challenging for both.

I will talk to my doctor about a support group.  Since writing you, they have discovered a mass on my left lung, but the new primary doesn’t think it is cancer, however, he has prescribed more CT’s and blood draws, and breathing tests.  So time will tell.  In the meantime, I need to find a way to get back on the PD meds, as my hand shaking has gotten worse with this new challenge.  I am sure stress is causing it.

You will be in my prayers, for we all deserve God’s attention.

Beth

 

 

 

[Beth T Browne]

I am 83 and was just diagnoised in July of this year.  My MRI showed my problem was lack of dopamine.  I have had shaking in my hand, and a slight balance problem, but my walking is not a big problem right now.  I had a lot of nausea on the dopamine meds, and the doctor took me off.  I think I may have had this disease a year ago.  I am concerned in that I can’t do well on the meds for Dopemine.  Is this mannitol something that I might try?  Do I need to ask the doctor?  I would have no idea how much to take or how often.

[Beth T Browne]

Hi Mary Beth.

I was reading all the letters here, and must admit, it scares me.

I was diagnosed last month, July, but am pretty sure I had PD last year after reading the symptoms.  I am 83, and never thought of getting this disease.  I am also a 27 yr breast cancer survivor.  I do have a leaky heart valve, as of about 3 yrs ago, but it is doing fine.  And I have lung issues from time to time due to bad allergies which if I can’t stop, go into more serious illness, but I have a way to treat that, if I catch it early.  And, it usually works.

I moved here two years ago to be closer to my daughter, who is not that close to me, but will respond if I ask for help.  She was with me for the diagnosis, and never said anything all the way home.  She has not talked about it since, nor called to see how I am doing.  I hear from her through Facebook.  She is married.  Was retired from teaching, but has gone back now, and will only have Friday’s off, which doesn’t leave for much time to care for me, as she has a husband, and a daughter, living with someone, about 45 min away.  So, I try not to call.  I have no idea how long before I can’t drive or do somethings I need help with, and I guess everybody reacts differently.  The dopamine drugs have cause terrible nausea, and I am not eating right.  So after only being on them 2 weeks, the doctor has taken then off.  I usually weigh around 100, but got down to 97, and now, down to 95.  I don’t sleep well, so I am concerned about both of these.  I lost my appetite after the drugs, and now 5 days later, I am finally eating better.

I need to plan for down the road.  I am concerned about care, the cost, etc.  I want to do all I can now to help keep things under control, but not sure how to do that.  I did read the importance of exercise.

At 83, I may not have a lot of years left, however, my grandmother lived to 99.  Ha!  I won’t make that at this rate.  I have a son in WA who I am closer too, but he is married, and I don’t want to ever be a burden to either of my kids.  I need to get some idea where to research for this kind of care, and what cost I am looking at, so I can figure something out.

Any ideas are appreciated.

Thanks.

 

 

 

 

 

 

[Beth T Browne]

Hi Jan,

Thanks so much for responding to my question.  I so appreciate it.  I see my doctor this week, so I am going to discuss some things you mentioned.  I do take 3mg of Melatonin daily.  Been doing this regularly since July, but don’t see it helping.  My doctor says it takes a while to build up.  I am not familiar with Rytary, so will talk to her about that.  Mirtazapine I am not familiar with.  If it would help with sleep and my tremor, that would be great.  Thanks again for your time.

Beth

 

 

[Beth T Browne]

Ben,

Thanks so much for taking the time to respond to my question.  I will discuss some of your things and see if we can reach some solution.  I do appreciate your time.