Jump to content
helplinedonate
NickP1225

Dad newly diagnosed

Recommended Posts

Hello everyone! Happy New Year! My dad, 64, was diagnosed with PD a year ago this February. I have to be honest, after reading some of the posts in other Parksinson FB groups, I'm scared to death. I'm hoping that some of you can share your own personal PD experiences by commenting below. My dad's primary symptom, thus far, is a significant tremor in his left hand which sometimes extends down his left leg. My parents are divorced and my dad lives in an apartment (with a lot of stairs) all alone. He also lives an hour away from me. As you can imagine, this whole scenario is very nerve wracking for me. He currently does not take Parkinson medication as he says he does not feel he needs it yet. He has joined a support group, completed a PD exercise program, but now has not been doing his exercises due to a bone fracture he has in his foot. If anyone has any thoughts, comments, stories to share, etc., I would greatly appreciate it. I'm worried that his condition could decline rapidly and I don't know what I would do. My reason for this worry is from what I've read in other groups. Also, speaking of my dad's foot fracture, he said he was in the mall Christmas shopping and "couldn't raise his foot because of the bone fracture pain which caused him to hit his foot again into a clothes display". I questioned this because it didn't sound right to me. Maybe it could be just because of the bone fracture, but does this sound more like PD? He denies that it is. Thanks for your help!

Share this post


Link to post
Share on other sites

Welcome, NickP1225.

What type of doctor diagnosed your dad? Was it a general neurologist or a Parkinson's specialist (Movement Disorders Specialist, MDS)? Did the doctor prescribe medication that your dad is unwilling to take? PD diagnosed past the age of 60 progresses more quickly than Young Onset PD. From your description of his feet, he may be experiencing freezing, which can lead to falls and more severe fractures. He needs the medication. If you can get him to see an MDS, that would be best.

Dianne 

 

Share this post


Link to post
Share on other sites

Hello NickP,

I was Diagnosed at 34 years old. Attitude is %90 of the battle. If you and your father can maintain a positive realistic attitude he will do much better. The good news is he dose not feel he need meds so don't start unless you feel you need them. Also Exercise is the best medicine for PD. Once he heals from the fracture, help him to discover an exercise he enjoys, Walking, running, swimming, boxing, biking, ect. It can be anything that he like and gives him benefit.

The worst thing a person with PD can do is sit around and do nothing. Get him up and keep him moving. Even puttering around the house is beneficial.

I have found that as long as I get up and keep moving, stay active with friends and family, and keep going to work, I feel much better. When I let the apathy part of PD take over and sit around all day I feel my worse.

Good luck

Blessings

Share this post


Link to post
Share on other sites

I help with a PD exercise class & I am a PWP (young onset). There's exercises that can be done completely in a chair plus do brain exercises. The program is www.pwr4life.org ...

And a good MDS is important. You might want to post some of your questions to the ask the dr forum...

PEACE-

LAD

Share this post


Link to post
Share on other sites

Thank you all for your thoughts and comments! My dad sees an MDS in Boston so I know his care is in good hands. I was wondering if what he experienced was freezing, but I can't be sure and he says no. I will keep working on him regarding medicine and exercise. The doctor said he could either take the medicine or not, it was entirely up to him. They offered him mirapex which when they went over the compulsive behavior side effects my dad declined. At his last visit they mentioned sinemet, but my dad decided to wait on meds.

Does anyone have any stories to share that have been diagnosed over age 60 and have had the disease for several years? My dad lives alone, an hour away from me, so I worry about him even though he is very independent at this point.

Edited by NickP1225

Share this post


Link to post
Share on other sites

My mom has always lived with me.  She used to drive and do everything by herself and then she couldn't.  She needs assistance in everything 24/7 for years now.   She also has dementia which added on the misery.

 

 

Share this post


Link to post
Share on other sites

I would recommend that he start taking brain healthy foods, music, family time, de stress, exercise to delay taking PD meds for long as possible. Ashwaghnda,and mucuna are great herbs that mimic natural dopamine which might help him delaying PD meds. Also recommend thripala which is also helps constipation.Delaying meds may help him avoid dyskinesia induced by meds which happens after taking Pd meds for several years. 

Edited by waruna01

Share this post


Link to post
Share on other sites

IMHO taking PD meds is Not a death sentence. Regardless what some people say dyskenisia is not necessarily a result of carbidopa/levodopa. Not everyone gets it. Also the path of Parkinson's is different for everyone regardless of age. Take every thing here with a grain of salt. I am 72 and had Parkinson's for about 3 years now and doing very well on C/L only.

Advice here is simply someone's personal experiences and does not necessarily represent the absolute definition of PD. Everyone is different and PD meds react differently in each person.

Best regards - this is something your father has to come to terms with. Thbank yo I for helping him.

Share this post


Link to post
Share on other sites

Very true Pdmanaz.  I hope you will stay at the level you are at for years to come.  My mom was still driving and gossiping with girlfriends  at year 3.   Ah.. the good old days.

 

 

Share this post


Link to post
Share on other sites
14 hours ago, pdmanaz said:

IMHO taking PD meds is Not a death sentence. Regardless what some people say dyskenisia is not necessarily a result of carbidopa/levodopa. Not everyone gets it. Also the path of Parkinson's is different for everyone regardless of age. Take every thing here with a grain of salt. I am 72 and had Parkinson's for about 3 years now and doing very well on C/L only.

Advice here is simply someone's personal experiences and does not necessarily represent the absolute definition of PD. Everyone is different and PD meds react differently in each person.

Best regards - this is something your father has to come to terms with. Thbank yo I for helping him.

I agree that taking Meds is not a death sentence. My husband only takes C/L and is doing very well. Few tremors, fatigue is his biggest issue. He has multiple illnesses so that complicates things, all in all I am so grateful he is responding so well to C/L. He will have PD in March for two years, he is 78.

Share this post


Link to post
Share on other sites
On 1/1/2018 at 5:37 PM, miracleseeker said:

Hi NickP1225,

My mom was diagnosed at 59 and is now 78.  She was independent for about 5 years.

 

5 hours ago, NickP1225 said:

Thank you both for your comments! I really appreciate them. Miracleseeker-how long has your mom had PD and what is her age now?

 

Share this post


Link to post
Share on other sites

Hi Nick,

My dad died last February of complications related to PD (choked on food due to swallowing issues). He was just shy of 83, had been diagnosed for more than 15 years, and prob. had symptoms similar to your dad's starting about the same age. He lived alone in his own place (a two-story condo) for at least 10 years post-dx, then lived in his own apartment in an assisted-living place until his death. He prob. should have transitioned to assisted living a year or two earlier than he did, as the reason he went to assisted living was a bad fall that left him unconscious on his kitchen floor for three days. If a neighbor hadn't noticed he wasn't coming out in the morning to get the newspaper, that would have been that.

By the end of his life, my dad was using a walker most of the time. He tired easily, but was still as mentally sharp as ever (he spent his career as a research scientist). He was not unhappy with his situation, or his quality of life. If he'd made a few different choices toward the end, (disclosing the swallowing issue, switching to a diet of soft foods), he'd likely still be alive, but he had quality-of-life preferences that were more important to him than living forever. I respect that--there comes a point when I think we all get to make our own choices regardless of what others might think we should do.

My point: PD affects everyone differently, with different rates of progression and different prognoses. Fortunately,  'declining rapidly' doesn't really happen. My dad had PD, and my sister and I have PD. It's different for all of us. The choices your dad is making sound very reasonable.

Edited by ShopGuy
  • Like 1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×