How have you adapted since the diagnosis?

[Krukar]

Hi Mary Beth,
Your Dad is very lucky to have you as an advocate.

I have adapted  with a new set of friends. My diet has changed though it is far from perfect. I got an exercise bike and try to use it everyday. I also do a variety of on-line exercise. I am lucky because I can focus on my program. I have a very supportive wife and that makes it more doable.

We pray a lot and that makes it so much easier!

Blessings to you and your Dad,

Mike

 

 

 

 

 

 

 

 

 

 

 

 

[Stev]

I have been trying some nootropics like nicotine that seems to be working plus exercise, exercise, exercise.

[Marla Klein]

My husband is doing boxing for parkinson patients at his pt place. He likes it and he started loud speech therapy helping his voice which was becoming very soft fading and hoarse. It has helped alot. Got a dog first one ever for us my hubby is in the mid 70’s im in my late 60’s. Although first time owners to Oscar  a Shitzu  who has been a life saver for him and me . He walks him twice a day . We had some changes done in house got rid of some  carpeting as hard to walk on for him we put handels in shower and built in a stool plus added hand held shower-head.   he is trying to exercise more uses a stationary pedal thing while watching tv. He also got guardian life alert that he wears and that makes my going out for short periods of time so much easier too. He used it once when he fell snd it is worth everything having that security when he is alone. One day at a time.

[Tina]

I’ve changed over the years as the disease progresses. I had to retire 9 years ago and symptoms have been on their steady march. Two years ago my kids bought a house and I live in my own little “apartment” while my daughter lives in the rest of the house and manages it

I’ve found it necessary to develop new friendships for emotional  support. My adult kids can’t really handle the day to day stuff I deal with and my family is non-communicative. Doctors only have a few minutes and I don’t regularly want to pay for visits to the psychologists they’ve referred me to for someone to talk to about dealing with all the changes.

Since I have a more life threatening chronic disease than PD, it overwhelms me sometimes. My day to day plan is working in the yard and meeting with friends online on zoom and instagram etc.  I study and pray.

I still do all my finances and shop online for needs and manage my RXs. I run little business online for a few extra spending bucks.  I’ve had meals on wheels for years for dinner and manage my breakfast and lunches.

When I get upset or depressed I come to the forums to see what’s new and what others are going through. I can still manage my own contacts, the occasional shopping trip and my life overall so I’m grateful for that. It’s not easy but that’s life and there’s always someone worse off as we all know

I’m glad these forums exist to let us vent a little and know we’re not alone on this journey

 

[Rick Tabakin]

At first, I had a tough time accepting the diagnosis.  But, it was pretty clear that I had the symptoms.  Once that info was digested: 1. installed grab bars in the toilet and stall shower (we have a built-in seat in the shower), 2. tried my best to keep active, 3. started speech therapy, 4. started PT with emphasis on balance.  More recently, 5. we replaced our family room couch with one that is easier to stand up from (the old couch had me too far back and I often lost balance when trying to stand).  My wife and I 6. updated our wills, set up a trust, set up power of attorney and medical directives, and set up lists of important documents and directives on handling our valuables. 7.  I also started taking Master’s level college courses (I’m 72 and retired with no interest in returning to work) so as to keep my brain engaged.

[John Citron]

I have learned the hard way to do things in moderation because I can’t do the things like I used to. I was one that used to work a 60-hour job plus go to school at night and study piano too, then come the weekends I was off and bike riding 50 miles or more during the nice weather. This doesn’t mean I still don’t do things; I just don’t do a lot of them like crazy and pace myself a lot.

I’ve been on disability since 2012 which meant tightening the belt with no vacations and traveling like I used to. I found that was getting to be too much anyway with the stress of the trips making me feel worse than when I started. Being on disability is also a bit stigmatizing because people look at me like I’m lazy. I don’t always show outward symptoms and the tremors are not always present. For the majority of the normal ones, we only have the tremors.

As we go through the phases and stages of Parkinson’s we learn to compensate and have to do things differently. I now have to think about my feet to avoid falling, count out loud sometimes when I walk to keep from freezing, and fatigue easily. Speaking of fatigue, which is different from being worn out or tired, going food shopping is exhausting. Going to the doctor one day means the next day is toast physically. Naps are my friend now even though I never thought of them before.

More recently, we’ve renovated the downstairs bathroom and put in a handicap accessible tub with rails and a seat. This will help my 87-year-old dad right now, but that’s also future-proofing the house when I’m banned from climbing stairs because, I live a house designed by M C Escher, or it seems that way! 🙂

I also don’t drive as much. I am actually a bit concerned about myself on some days and I recently had a couple of near misses which scared me. This is something I need to talk to my neurologist about. Seriously!

I now leave the cooking to others. I have insisted on placing a metal pot with eggs and water in it in the microwave. I didn’t do this just once; I’ve now done it three times already!

I have a difficult time tying the garbage bags closed and end up using a twist tie. For some reason the coordination isn’t there to tie the ends properly.

I can no longer participate in jury duty. When the fatigue hits and the meds make me tired, I don’t think the judge would be too happy. I mentioned this to the clerk of courts at my last jury duty and I was dismissed immediately! She was very nice and agreed, that wouldn’t be a good thing. I then had to call my doctor for an exemption form that was faxed over.

So, yeah that rude awakening that happens albeit slowly over time is a rude awakening when we start thinking about it. I’ve adapted by not doing as much or some of the things I could do before.