Me and PD.

Jan 31, 2011
Newcastle, Australia
Sue
But I'm back.
What I think is really good is that you felt able to expound in this forum as much as you did. PD is a bastard of a thing, and I'm glad you are able to tell us how you're feeling. Depression is also a bastard of a thing, and I'm so sorry you have that too, on top of everything else. Its a bit hard to avoid though. If you're able to concentrate on reading, theres a really good book called "Beating the Blues" by Jillian Ball and Susan Tanner. Its easy to read, and you can do it in bits and pieces. Beating the Blues: A Self-help Approach to Overcoming Depression
 

bilzmale

Hall of Famer
Jul 17, 2010
Perth, Western Australia
Bill Shinnick
Now for some good news. My eldest son, Peter, is an ultra-marathon runner. He has completed the 80km Busselton Ultra in the last two years and over Easter did a 12-hour run covering 82km.

He has decided to run from Kalgoorlie to Mundaring (suburb of Perth) next April - a distance of 650km or 400 miles in 10 days to raise awareness of PD and hopefully raise some money in the process. For most of the run he will follow the Goldfields Pipeline and the project is called "pipeline4parkinsons".

Kalgoorlie is my birth-place and Peter managed the Target store there for 2 years so it is significant to us both.

Read more at the links below.


 

bilzmale

Hall of Famer
Jul 17, 2010
Perth, Western Australia
Bill Shinnick

bilzmale

Hall of Famer
Jul 17, 2010
Perth, Western Australia
Bill Shinnick
This thread is still active but I have been involved in arranging my brother-in-law's funeral this week. I am the second youngest of my six siblings and at 73 am the most mobile and the only one driving. It was a tiring week but very satisfying to realise I still have all my planning and organising skills and am still useful. The funeral went very well.
 
This thread is still active but I have been involved in arranging my brother-in-law's funeral this week. I am the second youngest of my six siblings and at 73 am the most mobile and the only one driving. It was a tiring week but very satisfying to realise I still have all my planning and organising skills and am still useful. The funeral went very well.

Bless you. Gotts deal with a funeral myself at the end of the month
 

bilzmale

Hall of Famer
Jul 17, 2010
Perth, Western Australia
Bill Shinnick
Is it because of the PD that is the cause of the depression?
Depression can be a side effect/symptom of PD but not always present.

I've had full-blown major depression for over 20 years. As a result I was forced into early retirement at 54. I was convinced I'd failed and was a source of embarrassment to the school/church community I worked in. I deliberately became socially isolated to cope with my shame. I was hospitalised on 3 occasions, had two courses of ECT (aka shock therapy) and tried just about every anti-depressant and anti-psychotic available.

As recently as last year I finally began to accept that I had not failed, my successful career was still relevant and I needed to 'forgive' myself. It took 5 months to wean off the anti-psychotics and am on a low 'maintenance' dose of Anafranil which also treats my OCD tendency.

Not sure if that's too much information but in some ways having PD has helped me to analyse myself more realistically.
Btw photography has helped, except for the GAS. :frown:
 

TraamisVOS

Hall of Famer
Nov 29, 2010
Melbourne, Australia
That answered my question to the T. I was wondering whether you'd been dealing with it since before PD or because of it.

People didn't understand depression back then. The community at large still don't understand it today but at least they don't put people through what they put you through anymore. It's not standard practice these days anyway.

You know, if photography helps, I would totally encourage you to indulge in the GAS.

I have been at extremely low points in life, had it diagnosed by a psychiatrist. However, him and I knew the exact cause of it. Anyway, during those dark, dark periods, photography gave me something to focus on and it got me through the deep dark days.
 
Depression can be a side effect/symptom of PD but not always present.

I've had full-blown major depression for over 20 years. As a result I was forced into early retirement at 54. I was convinced I'd failed and was a source of embarrassment to the school/church community I worked in. I deliberately became socially isolated to cope with my shame. I was hospitalised on 3 occasions, had two courses of ECT (aka shock therapy) and tried just about every anti-depressant and anti-psychotic available.

As recently as last year I finally began to accept that I had not failed, my successful career was still relevant and I needed to 'forgive' myself. It took 5 months to wean off the anti-psychotics and am on a low 'maintenance' dose of Anafranil which also treats my OCD tendency.

Not sure if that's too much information but in some ways having PD has helped me to analyse myself more realistically.
Btw photography has helped, except for the GAS. :frown:
P.D. can for sure be a cause for depression, especially after that initial diagnosis. And P.D. can cause chemical changes in the brain, many patients experience quite dramatic changes.

But as with any challenge, it can be a source of reflection and reexamination or spiral someone further into a depressive state.

As for my father with his 10 years diagnosed with P.D., he for sure had days or even weeks that were really rough and depression would hit him hard. He ran a construction company and the day he had to close up shop was really tough.

But he had a great support system in place and was able to keep moving on. Overall he handled having P.D. well and probably better than I would.
 

bilzmale

Hall of Famer
Jul 17, 2010
Perth, Western Australia
Bill Shinnick
Had my 4-monthly review at Fremantle Parkinson's clinic yesterday. It was a new Dr (they rotate every 6 months) and she asked the same sort of questions although she was up to speed with my notes. I really like the holistic, multi-disciplinary approach and I thought I'd share some specific insights I gained.

One of the first I saw was the Dietician. Turns out I was not getting enough protein to combat loss of muscle mass. I now add protein powder to my morning cereal and snack on tuna, boiled eggs or cheese instead of carbs (ok; cake and biscuits :frown:). I was also encouraged to drink my coffee made with all milk which is my habit anyway. Lastly, she pointed out that my main medication was more effective taken on an empty stomach which was news to me. It seems the second ingredient that transports the L-Dopa across the blood-brain barrier also transports protein to the muscles which is potentially ineffective on a stomach filled with protein.
 
Had my 4-monthly review at Fremantle Parkinson's clinic yesterday. It was a new Dr (they rotate every 6 months) and she asked the same sort of questions although she was up to speed with my notes. I really like the holistic, multi-disciplinary approach and I thought I'd share some specific insights I gained.

One of the first I saw was the Dietician. Turns out I was not getting enough protein to combat loss of muscle mass. I now add protein powder to my morning cereal and snack on tuna, boiled eggs or cheese instead of carbs (ok; cake and biscuits :frown:). I was also encouraged to drink my coffee made with all milk which is my habit anyway. Lastly, she pointed out that my main medication was more effective taken on an empty stomach which was news to me. It seems the second ingredient that transports the L-Dopa across the blood-brain barrier also transports protein to the muscles which is potentially ineffective on a stomach filled with protein.
For sure. I am all about a whole-body approach to any issue you are having
 

bilzmale

Hall of Famer
Jul 17, 2010
Perth, Western Australia
Bill Shinnick
It is over 3 months since I posted here. My depression got bad again and my apathy said 'give up'. So I did.

I am actually OK at the moment and have been for several weeks now (as far as depression goes). While depressed I felt I should not continue this thread and believed I was being self-indulgent. In my current state I know that was not true. Today I received a PM from one of the several readers enquiring as to how I was (he/she will remain anonymous) and it felt good.

So I apologise for leaving so abruptly and having re-read this thread I am truly grateful for the support so many of you gave me. No promises but I may start posting here again. Not photographing much but I still visit daily and follow the chatter. Cameraderie is a 'warm place' for me.
 
Just posting in a good place is enough. The photography - only if you want to - it might provide some moments of laughter and silliness - which might be helpful.
You might start a thread or album with a daily report on mental/physical state using photos of Eoyore and Tigger. Who is more "in focus" today? Who is enlarged by perspective? Who is in color and who is b&w? Etc.
 

bilzmale

Hall of Famer
Jul 17, 2010
Perth, Western Australia
Bill Shinnick
The next topic I wanted to raise (back before I faded out) was what I learned from my 3 visits with the speech pathologist at the Fremantle Hospital Clinic. All muscle systems can be affected in PD but swallowing and speaking difficulty are one of the earlier signs.

I had to become aware of monitoring my actions in this area. I have problems swallowing food, water, and medication. I dribble from time to time and also spill when drinking from a glass as I guess the 'seal' is not quite right. As I said you have to consciously do these normally automatic processes.

The breathing muscles and vocal cords are also affected. I run out of breath and speak in a monotone at low volume and pitch. Again this has to be managed consciously by speaking in an exaggerated, enthusiastic style or the listener, especially grandkids, may interpret this as disinterest. My strategy is to speak like my married daughters who are both animated, involved and excited conversationalists.

A real danger as the PD progresses is the inhalation of food or drink resulting in aspiration pneumonia which often is fatal. Ironically I learned a few hours ago that my younger brother, Bernie, is in the hospital with just this. He suffered a massive stroke in Feb 2018 and has been in high-level care ever since. He was admitted on the weekend but not responding to treatment and the hospital is sending him back for palliative care this time so he has run his race.
It is a glimpse of my likely future in years to come. I choose to share this in the interest of honest discussion now that I'm 'back'. For Bernie and his family it will be sad but a blessed release as well.
 
The next topic I wanted to raise (back before I faded out) was what I learned from my 3 visits with the speech pathologist at the Fremantle Hospital Clinic. All muscle systems can be affected in PD but swallowing and speaking difficulty are one of the earlier signs.

I had to become aware of monitoring my actions in this area. I have problems swallowing food, water, and medication. I dribble from time to time and also spill when drinking from a glass as I guess the 'seal' is not quite right. As I said you have to consciously do these normally automatic processes.

The breathing muscles and vocal cords are also affected. I run out of breath and speak in a monotone at low volume and pitch. Again this has to be managed consciously by speaking in an exaggerated, enthusiastic style or the listener, especially grandkids, may interpret this as disinterest. My strategy is to speak like my married daughters who are both animated, involved and excited conversationalists.

A real danger as the PD progresses is the inhalation of food or drink resulting in aspiration pneumonia which often is fatal. Ironically I learned a few hours ago that my younger brother, Bernie, is in the hospital with just this. He suffered a massive stroke in Feb 2018 and has been in high-level care ever since. He was admitted on the weekend but not responding to treatment and the hospital is sending him back for palliative care this time so he has run his race.
It is a glimpse of my likely future in years to come. I choose to share this in the interest of honest discussion now that I'm 'back'. For Bernie and his family it will be sad but a blessed release as well.
Unfortunately if not monitored chocking can be a real hazard.
 

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