My Life With PD - Pt 2

MY LIFE WITH PD PT 2 - The Diagnosis

My apologies for taking so long in posting part 2 only I've not been well as the pills do not seem to work anymore. But I'll explain more about that in a forth coming issue.

Before I continue I should point out that my hobbies are making models and computers (building and repairing of). I also like a bit of D.I.Y. Although I'm not 100% proficient in it I do know what I'm doing (most of the time).

Now then, where were we? Oh yes, 2004. I was working hard as a dispatch manager in a family run business near Canterbury, Kent. It was the most fantastic company to work for and by immediate boss was second to none. Yes the hours were long, but I loved my job and couldn't get enough of it. Makes me sound a like a bit of a work-a-holic, which I'm not. Although my tremors had gotten a bit worse by now I was still managing to cope with them. This wasn't what was bothering me though.

My problem was my right knee was beginning to get extremely painful after a few hours on my feet. This in turn was causing my hip to hurt as well. so a trip to the quacks (sorry, GP) was in order. The Gp referred me to two specialists. One for my hip and knee. The other for my tremors. The knee specialist informed me that my hip was fine but the cartilage in my right knee had, well, sort of gone completely. He said this was down to wear and tear over the years. I pointed out that mny left knee was the same age and I don't have any trouble with that. Total silence, not a glimmer of a titter. Why is it specialists have a total lack of sense of humor. The tremor specialist however booked my in for a 'DaTscan' (yes DaT not CAT).

The Knee specialist sent me to a physio therapist, who I can only describe as Dr Mengaler. He had me on a rack with a bag filled with water at the bottom of the bed attached to my bad leg, pulling it. Needless to say I only went once. I continued to work through to 2005 as best I could but had to face the possibility of giving up work. My tremors by now had begun to increase sill further. I went for my DaT SCAN. DaTscan stands for 'Dopamine Transporter'. It gives the specialist a picture of the brain (about the size of a marble in my case). The Dopamine area of the brain is pictured as a comar like shape on each side of the brain. In my case the left side one had completely gone and the one on the right was only half there. There was no doubt in his mind, I had Parkinson's. Well J and I just starred at each other for a moment, speechless. He prescribed me 'Mirapex' and 'Donperidone' and 'Resagoline'. The Donperidone was given because in his experience the Mirapex gave a nausia effect. The Resagoline working in conjunction with the Mirapecx. I was already on Tramadol for knee pain and Diclofenac for anti-inflammatory. The pills were mounting up. I was now beginning to rattle when I walked.

After a lot of soul searching and lots of tears with 'J' (my wife Jacqueline) we agreed it would be best for me to retire from work due to ill health. This was no easy task I can tell you. I'd worked all my life, enjoying every minute of it, and the prospect of giving it all up didn't appeal to me at all. So I reluctantly gave in my notice.

Now came the fun part of endless rounds of form filling for various benefits. The worst ones being, Housing benefit and DLA. The DLA took 12 weeks and the Housing benefit took 17 weeks. We had got to the point of eviction just a day or so before they paid. All this stress and worry was having it's effect on both J and I.

After a few weeks I began to notice, well actually J noticed, that my legs were getting fatter. Because my right leg bones were rubbing together, absent cartilage, my knee was bowing outwards very severely. Over the next weeks my legs got bigger and bigger. To the point where my skin was beginning to spilt and clear fluid was leaking out 24/7. Guess what now? Yep, another trip to the GP.

What else was I going to get. They say you suffer in this life for misdemeanors in your previous life. In that case then I must of been a mass murderer or serial killer. This time the GP said I had Lymphedema in both legs. So now it was off to the nurse for pressure bandages. I thought to myself that someone upstairs must be having fun trying to find out just how much pain and suffering one man can stand. To add insult to injury, I began to get pains in my left hand. Now what the hell was wrong I thought. Back again I went to my second home, the GP's office. It was the beginnings of Osteo Arthritis, which I already had in my right leg. Of all the things to have wrong with you, where any movement due to Parkinson's was agony, Arthritis was not my immediate choice.

So there I was in 2007, weight ballooning up to 26 stone, Parkinson's, Lymphedema in both legs, severe Osteo Athritis in my right leg and Osteo Arthritis in my left hand. I thought to myself, right now a cyanide pill would be handy.

This concludes part 2. In part 3 it's my wife's turn. I thought it would be good to have carers point of view of my life with PD.


Continued in Pt 3 - The Carers Point of View.
Thank you for writing these papasmurf.

For those who missed the first part, you can find it here:

Hello Papasmurf,

I found your history of your condition very interesting and as a carer for thirty years I will am looking forward to your next section,
I wonder if you were given the reasons for your legs swelling so much it sounds as though something else is going on here not just O/A it doesn't seem right somehow? Just a thought.
best wishes
Hi papasmurf We must share the same Gp The one with the blank face,and hard of hearing.Best wishes Angel4ux
Hi Papasmurf

Ive been reading your latest series of posts with interest, I too suffer the dreaded arthritis alongside my pd and sometimes it's hell.

Ive been going to physio and the exercises that she gives me make me laugh. Last one was lie on back legs in the air bent from the knees and roll knees from side to side. Don't know about anybody else but it's blooming impossible whilst legs and arms are frantically shaking, sure she thinks I'm a flipping contortionist!!! Do these people really have any level of understanding? I understand that they are trying to help but really, my pain isn't going to go away no matter how much I stretch my back, in fact it makes it worse cos the arthritis is in my neck and shoulders too. I've now bought myself a tens machine and am using that in the hope of some pain relief, hey ho here we go....trying anything to simply have a day without pain. Knowing my luck I'll probably live till I'm in my 90's and slowly rot away.

Sorry all for this moan but as you probably guessed I'm feeling pretty rotten at the moment. Take care all, I look forward to your next episode Pappa.


The frustration of
Thanks guys and gals, (God I sound like Jimmy Saville) for reading and I hope enjoying my life series. The Wife is busy composing her part as we speak. I going to make sure I go over it with a fine tooth comb. Goodness only knows what she's written already. Although I do go on the computer daily. For knowledge improvement of course. I'm not able to write much because of the tremors most of the time. If I tried writing a sentence with the tremors it would take about 3 days and still wouldn't make any sense. So bear with me folks, I'll get there in the end.

There could be one possible underlying reason for the legs swelling. But that is coming up in my next part. Part 4, as the wife is doing 3.

I sympathize with you whole heartedly. I know exactly how you feel. Some morning I just don't want to get out of bed and face another day of pain. The wife gets quite upset at times because she feels so useless at not being able to help. But as I tell her just her being there is such a comfort. I wonder if you've tried something my doctor prescribed for me for my knee. It helped a great deal.; It's called Ketoprofen gel 5%. I rubbed it in as often as I needed it. Let me know if this was of any help.