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How to stop obsessing about new symptoms.


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#1 pwri

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Posted 13 August 2014 - 08:34 AM

Hello,

 

My 77 year old mom was recently diagnosed with "likely early stage Parkinson's." So far her only symptom is a right arm tremor at rest. I know everyone presents differently with PD and that the rate of progression is variable. I am home visiting my parents and I just can't stop looking for signs of PD progression. I listen for slight changes in her voice, changes in gait, etc. I'll just assume that most loved ones do this, especially in the early stages of PD. How have other people handled this? Thanks...Paul



#2 johnnys

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Posted 13 August 2014 - 08:59 AM

PD is usualy a very slow progression.Ive had it since 2008.Many people comment how well I manage it as they are often suprised I have it.

lately I got sick with a bug and the drugs stopped working for awhile.It can be a shocker but after talking to others it is a temporary worry.

Im slowly getting back tomy old self and hopefully don't get sick again.

Your mother was lucky she got it late. My aunt got it when she was 92 and she still works a part time job at her apartment cashiering a store.



#3 pwri

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Posted 13 August 2014 - 09:17 AM

Thanks Johnnys. Sometimes I think us newbies just need to be reminded that PD can be managed for a number of years...hopefully.



#4 old+slow

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Posted 13 August 2014 - 10:19 AM

For what it's worth, I just turned 60 last April and was dx'd in 2013. My doctors tell me that at my age, I should not obsess about the progression. I think this is a nice way of telling me that I prob wont live long enough to see the advanced stages of PD. My progression seems slow and my med's have my major symptoms under control.

 

Hopefully your mom is in the same boat and has many many years ahead before having the more advanced symptoms.

 

Hope this helps put you at ease some.

 

Vic


So what were we talking about?


#5 musicman

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Posted 13 August 2014 - 04:35 PM

It's a good question tho...especially for those of us who were JUST diagnosed. I currently have no real issues, other than a tremor, but I keep imagining all these horrible things happening to me in the next 6 months....like I'm gonna go from fine to a cripple in half a year!!!??? It's illogical I know, but the unknown is what really scares me.


Age 58. Diagnosed 7/14 by a DatScan. Currently only display a right hand/arm tremor. Beginning Azilect 8/6/2014


#6 pwri

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Posted 13 August 2014 - 05:23 PM

Thanks old+slow. It's only been two weeks since we were given the news so I guess I am still a little shocked. Musicman, I agree.  I have had visions of me coming back to visit for Christmas and my mom is in a wheelchair. I know that life itself is an unknown, but PD still plays games with my mind. I hope you guys both have many, many  more years of quality living.



#7 old+slow

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Posted 13 August 2014 - 05:43 PM

It's a good question tho...especially for those of us who were JUST diagnosed. I currently have no real issues, other than a tremor, but I keep imagining all these horrible things happening to me in the next 6 months....like I'm gonna go from fine to a cripple in half a year!!!??? It's illogical I know, but the unknown is what really scares me.

Trust me I know I had all those same emotions going through my mind when I was dx'd. For me, this faded some after learning more about the disease and talking with other pwp's. None of us know what tomorrow may bring, and I guess it's normal to think about the unknown but I try not to dwell on it.

 

I like to think of it as being in AA. One day at a time ;)  Today was a good day and who knows, tomorrow someone could find a cure for us? Or perhaps a new med to better control our symptoms ? Or maybe our progression will be so slow it wont matter.

 

As you can tell.... I'm a glass is half full kind of guy :D

 

Vic


So what were we talking about?


#8 christie

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Posted 13 August 2014 - 05:51 PM

Thanks old+slow. It's only been two weeks since we were given the news so I guess I am still a little shocked. Musicman, I agree.  I have had visions of me coming back to visit for Christmas and my mom is in a wheelchair. I know that life itself is an unknown, but PD still plays games with my mind. I hope you guys both have many, many  more years of quality living.

 

I'm sorry  if this sounds a bit "harsh"- this is far from my intention- but a diagnosis of PD at the age of 77 shouldn't come as a shock. truth is we would all get Parkinson's if we lived long enough. Be thankful she got this disease at this age and not earlier. Parkinson' is a slowly progressive disease. With proper treatment, your mom is likely to have many good years ahead of her.


Edited by christie, 13 August 2014 - 05:52 PM.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#9 pwri

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Posted 13 August 2014 - 05:55 PM

@Christie, I think a PD diagnosis is a shock at any age; as is cancer, MS, etc. People don't think about these things until it happens. Vic, I like they way you think, but you are from NH "live free or die" beautiful state btw.



#10 christie

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Posted 13 August 2014 - 06:13 PM

Pwri, when I start feeling sorry for himself,  for all the things I've already lost to PD and those I will lose in the years to come, I try to remind myself that there are people with much worse diseases than PD, like those you mentioned -cancer, MS (ALS is actually first on MY list). And my pity party is over in a minute. just like that. Seeing things from a different perspective may be difficult or unthinkable at first, maybe even annoying, but with time you will realize it's the strongest antidote to depression and the shortest path to acceptance of those things we cannot change.


Edited by christie, 13 August 2014 - 08:33 PM.

-English is not my first language !

-Aged 39. Diagnosed at 35. On levodopa monotherapy (500mg daily).


#11 Trying hard

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Posted 13 August 2014 - 07:02 PM

From a caregiver I can tell  you that what you are going through is normal no matter what age the pwp is.  Just relax, your mom is the same today as yesterday, all that has changed is that she does have PD.  Try to relax and enjoy your mom, and as you get use to the diagnosis you will find yourself watching less and less.  Doesn't mean you are not paying attention, it just means you've accepted the diagnosis.  Remember too she is in the early stages, and no one can tell you how fast or slow it will progress, and it will do you no good to spend time worrying about  it.

Best of luck to you and your family.



#12 miracleseeker

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Posted 14 August 2014 - 06:21 AM

Hi Pwri,

 

I wish I knew how to tune these thoughts out of my brain too.  Sounds like you do not live with your mom so the unknown is scary.  I'm the caretaker of mine and for years I never really gave it any thought because since I see her daily she seemed normal to me until I finally took a good look at her recently and realized she is not the same person anymore.  Like Christie said you should at least be glad that it happened so late in life.  It usually takes a while before it advances to another level so just pray that symptoms do not go further than a few tremors.  I know exactly how you're feeling.  I live it daily.



#13 pwri

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Posted 14 August 2014 - 11:03 AM

I hear ya miracleseeker. Sometimes I wish I could go into a time machine and go back to being 10 years old again. However, I sometimes wished this even before the PD thing. Life when my biggest worry was breaking in my new baseball glove in time for summer :)



#14 miracleseeker

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Posted 14 August 2014 - 12:06 PM

Oh my gosh were we separated at birth because that's how I always feel.   Parents are suppose to be the protectors... for LIFE.   They worry about us and not the other way around.  Yeah I wish I was a kid again and everything was about me.  Never in a million years did I ever think I would be responsible for my mom's well being.  When you are young you just don't think that ahead. 

 



#15 Drummergirl

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Posted 14 August 2014 - 08:04 PM

Not to down play any illness, but I think I would have preffered MS over PD....just sayin. Yes MS varies in symptoms as PD, but for most it can be a come and go since it is an autoimmune disease and doesn't have the progression as with PD....

I think I had better call it a day as my brain and heart are both full or emplty....

Karen
Karen

Dx in 95' at 35- Normal MRI, Abnormal Da t Scan- Resting tremor- right foot, leg tremors. RX- 25/100 Carb/ l =600 mg,
0.5 Azilect 1 daily Comtan 200mg 2 day, 0.5 mg Clonazepam 1 daily.

#16 pwri

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Posted 15 August 2014 - 05:37 PM

Drummergirl...unless you have aggressive MS like a 38 year old friend of mine. MS, like PD, is very unpredictable.



#17 graflexmaster

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Posted 16 August 2014 - 08:44 AM

Hi pwri:

 

Let me put it to you this way, I'm 54, I've been dealing with Parkinson's for 23 years, and I don't worry too much over what I've lost, rather I savor what I still have. The symptoms for the most part can be controlled. Even though I have bad days, freezes, tremors, and some non-motor symptoms that the meds don't control, I still have plenty of good days, that allow me to enjoy life.


Michael

Current age= 54

Symptom Onset- 1991 (31)

 

Current meds

Sinemet 6X/day (700mg L-Dopa) 

Azilect 1mg 1X/day

 

 

To quote Cowboy, (a former regular forum member)..........Parkinson's brings us all together. With our many differences and emotions. We have something in common here. It is progressive, dangerous and has adversely affected our lives. We come together here looking for knowledge and comfort from one another.

-- Thank you Cowboy-- wherever you may be......................

 

<Remember, Reality is still optional>

 

<Love shared, Is Love increased........ Pain shared, is Pain decreased.>


#18 Drummergirl

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Posted 16 August 2014 - 11:23 AM

Pwr,
True, both are difficult and SUCK... My sister and my raquetball partner both have a come and go type, so far, but another friend has a more aggressive type.... whish we could give these diseases to the criminals....
Karen

Dx in 95' at 35- Normal MRI, Abnormal Da t Scan- Resting tremor- right foot, leg tremors. RX- 25/100 Carb/ l =600 mg,
0.5 Azilect 1 daily Comtan 200mg 2 day, 0.5 mg Clonazepam 1 daily.

#19 Drummergirl

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Posted 16 August 2014 - 11:27 AM

Sorry, Meant to type, pwri.
Karen

Dx in 95' at 35- Normal MRI, Abnormal Da t Scan- Resting tremor- right foot, leg tremors. RX- 25/100 Carb/ l =600 mg,
0.5 Azilect 1 daily Comtan 200mg 2 day, 0.5 mg Clonazepam 1 daily.

#20 Annikin

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Posted 16 August 2014 - 08:36 PM

It is natural to obsess about the new and unknown at first, but when it becomes all you think about and you stop living then the disease really starts taking everything. I stopped  dwelling on it and got back to actually living when realized I was voluntarily handing the illness everything by dwelling on it so much.  I found staying active, engaged and busy just like I always have been helped take my mind off it. The daily reality of it has just become part of my life. I refuse to let it take hold- I take my meds, exercise, rest when I need to and basically ignore the crap out of it. When you love someone who is ill, don't stop seeing them as someone you just love as opposed to someone you love who is ill. Offer support but maintain as much normalcy as you can otherwise life becomes about the illness.  And remember, not everything that happens to us has to be the PD- we all age and with it experience physical and mental challenges that just come with natural aging. 






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