There are so many stories here and mine is about the same; the shock, the emotional and physical pain of PD. I was 40 when the first symptoms began. I was newly re-married. My children were ages 16, 10, 9 and 2. I denied the presence of a tremor, slower movement, depression, and fatigue. After two years of going it alone, I finally gave in and saw a doctor at the patient, insistence of my husband. I am a pianist and dancer. I could do neither any longer and I was dumbfounded, desolate, and drowning in unbelief at what was happening to me. I had to quit cooking because I burned and cut myself every time I tried to fix a meal. I could no longer tie my shoes or button a blouse. I was having a hard time swallowing. I was extremely depressed, could not sleep when I needed to, and had no ambition or ability to reason anything in my mind. I was dreaming, dreaming, dreaming goofy, scary things! I retreated into myself, did only the bare minimum to keep my kids going to school. None of us understood it. After a diagnosis and medication I improved somewhat although briefly. After my first neurologist told me that I would never get better and that I should get used to the idea that I would become disabled down the road about 10 years. I didn't take these words very easily.
In the last 6 years, I have studied, searched and tried many, many things to help me function. Holistic this and that, cell and brain supplements, emotional healing techniques, faith in God, anything that felt right. They have all, indeed helped. I can play the piano most of the time, go dancing once a week with my husband, teach dance once a week, keep my house up so so, stay in touch with my adult kids, my one grandaughter, but most of all, I love life, even with PD. It's precious. I still have down times; even nosedives complete with crash and burn but they do not last. Eventually I come back up, find my body and go on. PD is 'a friend who has come to teach me great truths!' It's not the preferred method of learning life's truths but I don't have a choice. I have such love and empathy for all and any who have suffered similar experiences. It's good to share; very good for me anyway. I appreciate all who have offered their feelings, opinions, and experience with PD in their life.
Tracy Anne
Friday, 19 June 2009
Tuesday, 2 June 2009
PD and me
I am now 43 years old and was officially diagnosed with Young onset Parkinson’s Disease on 21/10/2003, not a day i can easily forget. Looking back now i can see there were signs of PD many years before the diagnosis, a shaking hand and arm and a severe bout of depression all evident at least 8 years before the diagnosis. The shaking hand and arm were only noticeable whilst i was playing online games and at the time i just put this down to bad posture at the keyboard. The depression lasted 4 years and cost me my job at the time but i will go into this at a later date when i feel i can share this.
Around about 1998 i started a new job working for a local computer company, things were going great for 4 years until a customer noticed that all the time i was working on their server my left hand was constantly shaking. This came as a bit of a shock, i knew it shook whilst gaming but never noticed that it now shook at other times, i think this is more to do with it happening gradually and because its gradual its not noticed by you but is blatant to anyone that does not see you that often. After a discussion with the wife a doctors appointment was made to find out what was going on.
My GP told me after looking at the shaking and getting me to perform a few hand movements that it was definitely not PD and nothing to worry about but she would make an appointment to see a specialist, in the mean time i was prescribed some tablets to try and control the shakes. Taking the tablets for the first time it became apparent within an hour that something was wrong, when the floor starts to look like its rolling like a wave and things going on around you seem in slow motion its a sure bet something aint right…. After a quick couple phone calls to the doctors surgery it became clear that i was prescribed a dose far higher than i should have been and i just had to sleep it off and then start at the correct dose.
The visit to the first specialist was a barrage of physical tests in front of him and then a repeat of the same tests for his superior after he was asked to have a look too. The outcome of the tests was that we were told i had EBT (essential benign tremors) and not to worry as a lot of people had this condition and could i visit him again in 6 months.
Two 6 monthly visits later we finally plucked up the courage to corner the specialist and ask him what he actually thought was going on as it had become obvious it wasn’t EBT. He said his personal opinion was that it was Young onset Parkinson’s Disease and that i really needed to see someone specialising in that field, he agreed to make an appointment to see a good PD specialist in London.
On the date of the meeting we duly travelled to London via train and visited a few sights while we waited for the 4:15pm appointment. My wife even managed to get me on the London Eye which is a feat in itself as I’m scared of heights LOL. We made our way to The Cromwell Hospital, a walk along a long stretch of road, a right turn down a street and we were looking at the entrance to the hospital. Now you can call us country folk but I’ve never seen so many Rolls Royces, Mercedes etc in one place, I’ve also never seen so many chauffeurs hanging around outside having a smoke. We walked through the entrance and i thought we were in the wrong place, not a nurse or doctor in sight, the place looked like a hotel with a large reception desk and plush seating everywhere (our local hospital has those horrid plastic chairs) we approached the reception desk and while waiting to be served (LOL) i overheard the receptionist tell the gentleman in front that his blood test came to £397, my chin must have connected with the floor on hearing the price we knew we would have to pay to see this specialist but now my mind was whirling with thoughts of just how much this was going to cost us. The receptionist confirmed our booking and asked us to take a seat and the specialist would come and get us when it was time, a specialist would come and get us LOL we were used to a buzzer going off and our number being displayed telling us we could now see a doctor at our local.
At 3pm Dr Bains duly greeted us and took us into a consultation room, he listened to my story making notes all the while, he asked me to draw some shapes on a sheet of paper, to write a couple of sentences then got me to stand up and proceeded to get me to perform loads of physical tests, index finger to nose to straight in front and then the other hand etc etc. After performing these tests he sat me back down and wrote on his notes for nearly 5 minutes all the while i kept glancing at my wife and we both wondered when he would speak. He eventually put down his pen, looked straight at me and said “I`m afraid i have to tell you that you have PD” talk about the carpet being pulled from beneath you..we had done some research on the internet and knew it was a possibility the diagnosis could be PD but to actually be told it was PD was devastating! He said he would arrange some scans and that we need not worry about paying just yet as they would send a bill.
We walked out of the hospital, neither of us speaking, i felt my wife’s hand grasp mine in a steel like grip and we made our way along the main road. We were walking along a main road in London and i can honestly say there wasn’t a person on the pavement and only the odd car go past us which is just as well as i could feel the tears rolling down my cheeks and if it wasn’t for the vice like grip on my hand i think i would have sat down on the spot and just blubbed away. How women are so strong in exceptional circumstances i will never know but i thank my lucky stars i married such a strong person.
We made our way back to the station and finally in a packed station we discussed how we both felt, why do women always know the right things to say?
Our train was late arriving (someone had a heart attack on the train) we sat on the train discussing various things, whether to tell the children straight away etc, we were due to swap trains 22 miles from our home but due to the delay the train was cancelled so we sat in silence the last 22 miles in a taxi eventually arriving home at midnight.
A long day that will not be forgotten in a hurry!.
Ripley
Around about 1998 i started a new job working for a local computer company, things were going great for 4 years until a customer noticed that all the time i was working on their server my left hand was constantly shaking. This came as a bit of a shock, i knew it shook whilst gaming but never noticed that it now shook at other times, i think this is more to do with it happening gradually and because its gradual its not noticed by you but is blatant to anyone that does not see you that often. After a discussion with the wife a doctors appointment was made to find out what was going on.
My GP told me after looking at the shaking and getting me to perform a few hand movements that it was definitely not PD and nothing to worry about but she would make an appointment to see a specialist, in the mean time i was prescribed some tablets to try and control the shakes. Taking the tablets for the first time it became apparent within an hour that something was wrong, when the floor starts to look like its rolling like a wave and things going on around you seem in slow motion its a sure bet something aint right…. After a quick couple phone calls to the doctors surgery it became clear that i was prescribed a dose far higher than i should have been and i just had to sleep it off and then start at the correct dose.
The visit to the first specialist was a barrage of physical tests in front of him and then a repeat of the same tests for his superior after he was asked to have a look too. The outcome of the tests was that we were told i had EBT (essential benign tremors) and not to worry as a lot of people had this condition and could i visit him again in 6 months.
Two 6 monthly visits later we finally plucked up the courage to corner the specialist and ask him what he actually thought was going on as it had become obvious it wasn’t EBT. He said his personal opinion was that it was Young onset Parkinson’s Disease and that i really needed to see someone specialising in that field, he agreed to make an appointment to see a good PD specialist in London.
On the date of the meeting we duly travelled to London via train and visited a few sights while we waited for the 4:15pm appointment. My wife even managed to get me on the London Eye which is a feat in itself as I’m scared of heights LOL. We made our way to The Cromwell Hospital, a walk along a long stretch of road, a right turn down a street and we were looking at the entrance to the hospital. Now you can call us country folk but I’ve never seen so many Rolls Royces, Mercedes etc in one place, I’ve also never seen so many chauffeurs hanging around outside having a smoke. We walked through the entrance and i thought we were in the wrong place, not a nurse or doctor in sight, the place looked like a hotel with a large reception desk and plush seating everywhere (our local hospital has those horrid plastic chairs) we approached the reception desk and while waiting to be served (LOL) i overheard the receptionist tell the gentleman in front that his blood test came to £397, my chin must have connected with the floor on hearing the price we knew we would have to pay to see this specialist but now my mind was whirling with thoughts of just how much this was going to cost us. The receptionist confirmed our booking and asked us to take a seat and the specialist would come and get us when it was time, a specialist would come and get us LOL we were used to a buzzer going off and our number being displayed telling us we could now see a doctor at our local.
At 3pm Dr Bains duly greeted us and took us into a consultation room, he listened to my story making notes all the while, he asked me to draw some shapes on a sheet of paper, to write a couple of sentences then got me to stand up and proceeded to get me to perform loads of physical tests, index finger to nose to straight in front and then the other hand etc etc. After performing these tests he sat me back down and wrote on his notes for nearly 5 minutes all the while i kept glancing at my wife and we both wondered when he would speak. He eventually put down his pen, looked straight at me and said “I`m afraid i have to tell you that you have PD” talk about the carpet being pulled from beneath you..we had done some research on the internet and knew it was a possibility the diagnosis could be PD but to actually be told it was PD was devastating! He said he would arrange some scans and that we need not worry about paying just yet as they would send a bill.
We walked out of the hospital, neither of us speaking, i felt my wife’s hand grasp mine in a steel like grip and we made our way along the main road. We were walking along a main road in London and i can honestly say there wasn’t a person on the pavement and only the odd car go past us which is just as well as i could feel the tears rolling down my cheeks and if it wasn’t for the vice like grip on my hand i think i would have sat down on the spot and just blubbed away. How women are so strong in exceptional circumstances i will never know but i thank my lucky stars i married such a strong person.
We made our way back to the station and finally in a packed station we discussed how we both felt, why do women always know the right things to say?
Our train was late arriving (someone had a heart attack on the train) we sat on the train discussing various things, whether to tell the children straight away etc, we were due to swap trains 22 miles from our home but due to the delay the train was cancelled so we sat in silence the last 22 miles in a taxi eventually arriving home at midnight.
A long day that will not be forgotten in a hurry!.
Ripley
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