“ Please only write here of you have had a direct experience of this condition „
I'm 32 years old and four months ago i started suffering paralysis in my right hand, neck and right side of my face followed by tremors. The tremors are mostly at rest but sometimes they continue a movement, like if i shake my head. I had previously had tremors in the right side of my body for very brief periods during the past couple of years but it went away after a few weeks. In this time my balance has gotten worse and i have gotten dizzy a lot easier.
Over the past four months the tremors have spread first in the right side of my body but is starting to move over to the left side. They have got considerably worse to the point where the tremors and freezing are full blown episodes and now during the bad ones i can't walk. The stiffness that was only on my right side (like unable to relax and tenseness) four months ago has now spread to my left. It affects my speech, concentration and memory.
I've been off work sick for three months. In that time I've learnt what i don't have through blood tests, an MRI and consultation. It is now down to epilepsy (Which seems unlikely), Parkinson's or something with no name. Am awaiting the results of an ECG.
When it all started i did a lot of research, Parkinson's is not purely an old person's disease. One in 20 is under the age of 40.
I'll update this when i know more.
~ So why am I writing this? ~
Basically, I have not just one experience of a family member with Parkinson's, but three.
The first was my maternal grandmother, who I only ever remember as having Parkinsons.
Later, my father's brother was diagnosed with Parkinson's while in his late forties, and in late 2002, some 4 years after his brother - so was my father.
~ What is Parkinsons and the causes of it? ~
As yet there is no definitive cause for Parkinsons. But its effects are the same - A loss of nerve cells in the brain, which are responsible for producing a chemical known as Dopamine. Dopamine loss is the reason Parkinsons begins to show, once it reaches a level of about 80% deficit.
Currently the main causes for this loss are being examined, with Environmental factors playing a part, and more recently some agreement that Gene abnormality does feature.
Its believed around 1 in 500 people will experience Parkinsons and the risk increases with age.
~ Main symptoms ~
The main symptoms are as follows:
1. Tremors, which usually begin in an arm or foot. This is the first symptom most people have, before finding out they have the disease. This was the case with my family, with all of them experiencing tremors in their hands and arms.
2. Stiffness or rigidity of muscles. Not to be mistaken for slowness of movement, this is a separate issue that impacts on tasks such as standing up or moving to and from a bed.
3. Slowness of movement (bradykinesia). This means you find it takes longer to do something, so tasks are now harder to achieve.
Other problems can be as follows:
* Sleep disturbances
~ So just how is this diagnoised? ~
I admit I'm going to rant a little here. Basically when my father first started showing signs of the disease, as a family we recognized the problems almost immediately. Our GP also thought there was a strong reason to suspect Parkinsons, but trying to then get Hospital consultants to take notice was a completely different ball game! Because at that time, they just didn't believe there was any likelihood of my father and his brother both being inflicted with Parkinsons. Now it is very rare to have more than one family member with the disease like this - but not impossible!
It was nearly 3 years, despite continued attempts by our GP and us to get my father looked out by the Specialist, and immediately he agreed he had Parkinsons. Three years of no treatment, when it was most needed.
Unfortunately Parkinsons isn't the easiest disease to diagnose anyway, but tests and scans are important to rule out other diseases, as well as needing to see a specialist who will have a set criteria of working out if someone has the disease.
As mentioned, tremours in the hand or feet are the usual sign that give an indication to someone something is wrong.
So I would urge anyone, if you believe you might have someone in the family suffering from Parkinsons, please do keep badgering for a specialist appointment. It is vitally important you are given treatment as early as possible with this.
~ Disease Progression ~
Unfortunately this is a disease that progresses in different ways with different people. In our case, all three members of the family have progressed at considerably different rates. My Father is unfortunately the worst of the three, and as I've already mentioned, we know part of this is because he didn't receive the correct medication until 3 years too late! But there have been advances in treatment that have improved the situation vastly over the years, with medications for example that weren't around when my Grandmother was diagnosed.
Nor does having Parkinsons mean it will kill you, but unfortunately it does lead to other problems that can make a sufferer more susceptible or exacerbate a condition that can kill.
~ Getting around and general living. ~
Yes, this is a disease that does impact on your daily living. It is vitally important that someone with Parkinsons gets help in many different areas. This should include:
Occupational Therapy, who will be able to equip the house with aids to help around the house.
Physiotherapy - Another vital component for someone with Parkinsons. Its essential that someone with Parkinsons exercises as much as possible to help stop the muscle and joint stiffness associated with the condition, and a Physiotherapist will be able to show different exercises that will help with this.
Counselling - Depression is often a major problem for people with Parkinsons, and something all of our family with it had or has a problem with and your GP should be able to help you. Alternatively see if you have a local Parkinsons group nearby, since they often have great help and advice for those suffering with depression, and often people with Parkinsons find it helpful just talking to others who have the same disease.
Speech Therapy - Again often another important factor in someone's treatment, and not just because they can help with speech patterns which can be disrupted. Another aspect of Parkinsons is people can have problems swallowing, and a speech therapist is also trained to watch for and help if this is a problem.
You should be seen by the Specialist (or the Parkinsons Nurse) at least every 6 months, and certainly every 12 months with the Specialist. Another problem with my father has been, while he has seen the Parkinsons nurse ever 6 months, its now over 2 years since he saw the actual specialist. Again, our GP is angry, as we are, that the specialist hasn't seen him at least once every 12 months - but unfortunately it is also testament to the lack of specialists out there. In some districts, they don't even have a dedicated specialist and rely on someone coming in periodically from a different NHS sector to help out.
So again, my advice is keep pushing to get seen by the specialist as needed. We've been told my father should be seen in the coming months.
~ And so..... ~
With my grandmother, admittedly it was pretty mild when I first recall knowing she had something wrong with her, so it didn't really intrude much into her life. But then, as time went on it did become more of an issue. I was a teenager when she was widowed, and because of her Parkinson's we, as a family, all took time to spend the night with her as carers. So, split between my mother, her sister, my sister and my cousins, we all took turns to try and help out.
Unfortunately it eventually became too much, and she did eventually go into a local nursing home.
With my Uncle, he is doing well at the moment. He lives in a completely different area compared to my Father, and his provision of care is considerably higher, and I don't believe its any coincidence he is also the one showing less deterioration. Unfortunately it does seem to be another one of those cases of what is becoming known - post code lottery. If you're fortunate enough to live in an area that has good Specialist care, you'll gain far more from it.
My father doesn't have this. Even getting a speech therapist took 2 years, and then it was the GP who realized it wasn't listed and he should have been seen far sooner.
An initial assessment took place a few months ago - but even then its come with more frustration. Because he lives close to England, that is where the Speech Therapist is coming from. But, because they are in Wales, the English NHS has his treatment right down the priority list, and aren't governed by the same requirement for provision of care, so it doesn't matter that he has now been told it will be another 18 months before someone can see him again, even though it should be every 6 months.
My father and mother now have to consider a move to a house better suited to his condition. They currently live in a 3 bed roomed cottage in the middle of the Welsh Mountains, but its location alone is now too isolated for my father, so they are looking for something a little better suited, and slightly smaller. At the moment they still want to remain in Wales, but because of the problems with some of his treatment, it might mean just moving back over the border into Shropshire, where they are originally from.
It is a nasty, insidious disease - and I know much of what I've written sounds pretty downbeat, but in many respects it isn't. My father and Uncle both insist on trying to do as much as they can, and this is where I think it makes such a difference to this disease. My grandmother gave up quite early on, and she couldn't be bothered all too often. Whereas my father and Uncle both take the view that it will only beat them if they let it, and so take each day as it comes and try to enjoy it as much as possible.
My siblings and I have been told, that we are at a slightly higher than usual risk of genetic Parkinsons because of my Father and Uncle. Unfortunately it was only in more recent years it was discovered a very small percentage of people have a direct genetic link with immediate family (less than 5%), and so they simply don't know enough at this stage to tell us how likely it is one of us will also be affected.
~ The Future with Parkinsons ~
Unfortunately it's a disease that just doesn't get the same level of funding as many others out there. Its also unlikely a single cure will be found, but there is hope that more will be found out about the disease that will not only improve medication techniques but ultimately will lead to cures for specific aspects of the disease.
Already, in the time between my grandmother having Parkinsons and my Father and Uncle both having it, there have been improvements in drug therapy.
New treatments currently being invested in, and research is also focused on investigating the causes of the condition. All of these can only help future generations of those who might end up with Parkinsons disease - The future isn't completely bright but we are certainly seeing strides made in the right direction.
Edited - July 2009 - My parents have now moved, and were fortunate enough to find a bungalow that not only suits my father perfectly, but also still gives them the living in the middle of nowhere both my parents still desperately wanted to keep.
Coincidently, once they had moved they then discovered that within the catchment area of where they are living, is a specialist Parkinsons Doctor. Not just a neurologist (who many only get to see, including my father previously) but someone who does only treat Parkinsons patients. Even more amazing, this is in Mid Wales still.
He has now been seen every month for the past 5 months, and with some changes (some very subtle) to his medication while he has still deteriorated from a year ago, there are now very obvious and needed improvements in his health.
So my advice to someone facing these problems - don't give up.
I don't know whether it's just me but when I hear people taking the p*ss out of people that shake, I always hear them refer to Parkinson's Disease. I'm an extremely jolly person always happy, however when I hear these cruel remarks, I snap into something that I didn't know I had inside me and give people a piece of my mind. I quite surprise myself sometimes but I can't bear it because I lost the closest person to me, the person that meant the most to me and I thought would be around forever and when he wasn't it broke my heart, 12 years later it still does when I think about it.
I can see this turning into a long review to be honest but at the end of the day its my experience with Parkinson Disease.
29 years ago's in January, i was born and on the day I was born my grandad nicknamed me bright eyes. Still calling it me for years, I was the first grandchild of two, my grandad's favourite, the apple of his eye. He was the best thing in the world to me, and always would be. I used to spend a huge amount of time at my grandparents house when I was young and when I when I think back to my childhood, the fondest memories that I have always involve him.
My grandad was a great man, liked by all in the community, a bit of ladies man but an all round good man. He was very generous, kind hearted and a funny man that could put a smile on anyones face without fail. He loved music and had an obsession with new technology, I found myself visiting Santa at least 8 times one year, as my grandad wanted to buy something new that had come out and it was an excuse to my nan that he was going to take me to see Santa. It makes me laugh now, I just thought I had been a very good girl and he thought I deserved that treat every weekend on the run up to CHristmas.
I remember the first signs of my grandad developing Parkinson Disease, as I mentioned earlier, he was a great lover of music and would often sit there tapping to the beat in his chair, not old fashioned music mind, I can remember in his later years buying cassette singles of EMF, so quite a modern man back then. Sat in his chair one day my nan noticed him tapping to the music, kind of uncontrollably which wasn't what he did as a rule. Being taken to the doctors and having tests on him, he was diagnosed with Parkinson's disease when I was around 8 years old.
Not quite sure what was wrong with my grandad when I was that age, I was a kid and to be honest he didn't look ill and at that time he was physically the same as he had always been to me so I never thought anything of it straight away.
I realised he was ill when he taken into hospital, I can't remember exactly what for and what I can remember he didn't seem too bad but he was in for two weeks and during that time my mum and I had come to stay with my nan. At that age you don't understand too much of what going on and it seems to go over your head.
The first time I physically noticed a difference in my grandad was one year when he was taking me to the local carnival. It was only down the road, however I remember him being unstable on his feet and not walking as quick as he used to take me. Over the next three years from then saw my grandad deteriorate a lot quick, the shaking in his hands had started to be more vigorous and his legs would also shake when he sitting down which is obviously why he became unstable on his feet. My nan and granded lived in a town house at the time, and it was getting a struggle to get my grandad upstairs to bed, so my nan applied to the local housing association who where regenerating the area and had built a new section of flats for older people. My nan was offered a ground floor flat and they moved there in January 1991, i remember as I was in my 2nd year at high school and spent a lot of time there.
Moving to the flat I feel made my grandad deteriorate even more. He was regularly taken into hospital for respite, in order to give my nan a little rest and then eventually she had to have full time home help. Parkinson's Disease not only took away from my grandad the ability to walk, it took away his speech, his life, his pride and his dignity. For the next 5 years my grandad spent everday with someone doing everything for him. The drugs he was on did work sometimes and I remember one day going my nan's to find him hoovering up when the day before he couldn't even get out of his speech.
He didn't like people visiting, he didn't like people seeing him like that, he couldn't say so but I remember seeing it in his eyes. He was embarrassed. I spnt as much time with him as I could, weekends, after school, after all he was the best thing in my life and I loved him dearly.
Before he was diagnosed with this terrible disease he was a 16st healthy man, this left him as a 6st frail old man that sometimes I don't care to remember because i don't want to remember him like that but it didn;t stop me loving him no less, just more because I wanted to be there for him.
He was eventally taken into hospital, which we all knew I think that that was it and he would never come home again. Fed by a drip, because his mouth and gag had gone completely we all sat with him as much as we could.
It was June 2006 and I was working at my first job when I was told there was a call for me. It was my mum and she told me that my grandad had died. Its the worst feeling I have ever had, a lump in my throat, i went into a state of shock and passed out. I couldn't get it into my head that I was never going to see my precious grandad again. It was bronchal Pneumonia that got into him and killed him but if it wasn't he that ghastly disease he would have had many years left. He was 69 when he died and not a day goed by that I don't think of him.
Today, i support the Parkinson Disease Society with a passion and try to get as many people involved that I can. There is currently no cure for it however they have developed new drugs over time but these where never available when we needed them.
I feel for anyone that has someone close to them that has this.
This opinion is sans spellcheck, in fact it's straight from the depths of me because my Mam has Parkinson's (PD). If only the disease was as amiable as the talkshow host. But sadly it isn't. It all started about two years ago. Being a psychology graduate (yes, I am mentioning that again!) I always thought a little knowledge was a dangerous thing and tried to keep what I learnt from textbooks far from the family home. But something wasn't right with my Mam, her handwriting was different, almost spidery and she seemed to have slowed down. So I read and read and urged her to press her GP for tests. First he diagnosed depression, now this may sound arrogant, but I just knew it wasn't that. So I argued with her to demand more tests. Thankfully she did. Then at the age of 46 she was diagnosed with PD. Things were quite optimistic at the begining, but looking back I can see that it was because my Mam was shellshocked. I however didn't take it well and found myself in floods of tears almost all the time. Having been born with cerebral palsy, I know how frustrating it can be when your body takes ages to listen to what your brain is saying. It must be doubly scary when you know that it can but get worse. My Mam was always a very lively woman, but suddenly she had to give up her job. Her one social outlet was gone and she would cry on the phone about how lonely it was. Things went for bad to worse when my parents split up. At the moment, my Mam is living in a semi detatched house with my 18 year old sister and three Jack Russell dogs. Living a good distance away, I go back only when I can't avoid it. I admit it, I am selfish, just to be in that house makes me climb new heights of stress. My sister is living in some kind of illusion that if she hoovers every so often and keeps on getting her supply of beer and cigarettes that things will be alright. That may sound harsh, but I genuinely think
that she is too young to have this 24 hours a day, 7 days a week, so she copes by rebelling and generally being bolshy. My Mam sleeps on the sofa downstairs, only changes her clothes if you offer to help or try to reason with her until you're hoarse. She won't bathe, because she says she can't manage it. She relies on my sister to wash her hair , so that it is washed bi annually. She cannot use a can opener and eats tiny portions of food that make Kate Moss look like a fat bloater. I am not telling you this to get the sympathy vote, but merely to share and to see if I am not the only person in this sad and desparate situation. My Mam's dogs deficate and urinate around the house. While I was there last week the pulled up the kitchen lino and peed underneath it. I found a pile of washing with weeks worth of excrement on it. It was then I knew I had to take drastic action. I returned home and accepted that I must do all I can to improve the quality of life for both my Mam and sister. That may sound a little obnoxious of me, but basically things had gotten out of hand and I had to do it because no one else will. I am hardly Saint Jo of Liverpool, I just set about making a few phone calls. 1. I doublechecked whether my Mam had a social worker. She didn't. I found this out by phoning the local hospital and the regional social work department. 2. I phoned her GP and asked him to visit my Mam at home and assess her situation. (The fact that I had to do this riled me somewhat as I had sent him a letter two months earlier expressing my concerns). I also chased up a physiotherapy assessment that my Mam had failed to follow up. 3. With a heavy heart I called the RSPCA National Helpline on (0870)5555999. I informed the representative of the situation and she informed me that the dogs could not be taken unless my Mam agreed to sign them over. There is more chance of me giving bir
th to Jarvis Cocker's child. But I agreed that a local officer could go round and have a word to my Mam about the conditions in which she was living. 4. I contacted The Parkinson Disease Association Helpline on (0808) 8000303 and asked whether there were any association to help people with PD to keep their pets. She gave me the number of an association that places people's pets in homes while their owner were in hospital Tel: (01280) 894000 These kind people then put me in touch with The Cinnamon Trust, a volunteer scheme that walks pets for those with mobility problems. A compromise for the time being as my Mam will not give up the dogs without a fight. In fact, if I can find a solution, I hope she can keep them as she loves them so. The Association also gave me numbers of support groups in her area. I thought this might be particularly useful as some of the people are around her age and it might show her that she isn't the only one who has to go through this, as she has never met anyone with PD before. Maybe, she won't use all the devices I have helped her gain access to, but at least now she has the option. I think as a daughter, you can get a little bit gun ho about the situation and forget that it is still your Mam's life and the disease is part of her, not you. I have researched the disease a lot and collected various leaflets for my Mam to look at when she feels ready. I can but be patient and wait for her to get there. But in the meantime, I have set in motion the things she will rely upon in the future. She gave me life, without her I wouldn't be here, it is the least I can do. All I have done is out of love. ----------------------------------- The Cinamon Trust only help people over the age of sixty five, so it is worth asking your own vet if he knows of anyone willing to help out.
*UPDATE AT BOTTOM* In the early 1990’s (I can’t remember exactly when) my mother was diagnosed with Parkinson’s Disease. At the time she was diagnosed she was in her early 40’s although we believe that she may have had it for several years before anyone realised. At the time I was in my early teens and didn’t really have a clue what was wrong with her, I couldn’t see anything except for a very slight tremor in her right hand. This tremor (or shaking as we now call it) would happen at any time and with no warning and the only way for my mother to stop it was to actually use the arm to do something. I was at boarding school and as time went on I started to notice a deterioration in my mothers handwriting in the letters she wrote to me (admittedly her handwriting was never that good to start off with). By the time I had left school my mother had to resort to typing her letters on the computer to make sure that they were readable. During the school holidays as I got slightly older I started to notice that my mum was starting to have difficulty doing previously easy tasks. One incident I remember very clearly was when the fluorescent light bulb in the kitchen needed changing. My dad was working away from home at the time so my mum had to do it – not that this was unusual, she’d always been the one doing the ‘physical’ stuff around the house (decorating, building patios, wall papering, carpet laying etc). What should have been a very simple task turned into a very hard one. Despite me standing on the washing machine holding the bulb in position my mother was unable to fit it into place – she couldn’t manage the small ‘fiddly’ fitting at the end and after much trying we had to resort to calling a friend to do it for us. I still remember to this day how upset my mum was that she couldn’t do what to her was an easy task. It was also the day that I realised
that my mum really WAS suffering from an illness. After I left school, as many of you already know, I went to Zimbabwe for 2 1/2yrs, during this time only saw my mother once – at my wedding 2yrs after leaving England. I noticed the difference in her as soon as she stepped off the plane. She was walking slowly (partly due to osteoarthritis) and looked slightly unbalanced. Once we had been reunited and arrived back my house I started to notice other things that seemed different about her. She seemed very tired (not just after the flight, but all throughout her stay), she seemed to have slightly fewer facial expressions – at times she just had a blank look on her face, she seemed to need a drink quite frequently (not alcoholic) and both of her hands shook much more than they had before I left for Zimbabwe. Just under six months later I returned to the UK and found that all of the above symptoms were still present, some even more pronounced than before – especially the shaking and tiredness. Now here I am another year later and things are pretty much the same. So what is Parkinson’s Disease? Parkinson’s Disease is the most common form of Parkinsonism – a collective group of conditions all occurring when nerve cells do not work properly in a particular area of the brain, the substantia nigra. Dopamine, the chemical messenger which co-ordinates the body’s movements, is produced in these nerve cells and Parkinson’s Disease occurs when 80% of these cells are lost. It is a progressive, neurological disorder and at the moment it is not known why these cells die, and as such there is currently no known cure. Who is affected? At the moment there are currently at least 120,000 (1 in 500) people in the UK who have been diagnosed with this condition and the figure is rising, every year around 10,000 people are diagnosed. In the over 65’s one person in 100 is affected and thi
s figure rises to one in 50 over the age of 80. However, this is NOT a ‘old persons disease’. It can, and does affect younger people too. At the moment it is estimated that one in 20 is under 40yrs old when diagnosed, and one in seven is under 50. (All figures taken from ‘Facing the Future’, Parkinson’s Disease Society). What are the symptoms and possible treatments? There are three MAIN symptoms of Parkinson’s Disease 1) Shaking (tremor). Approximately 70% of people diagnosed have a tremor. Most usually being in one hand or arm (like my mum), and it happens most often when resting or walking. In my mums experience this symptom can become worse when she is excited, anxious or ‘stressed’. 2) Stiffness (rigidity). Muscle stiffness is a very common early sign – we suspect that my mothers ‘arthritis’ (diagnosed before the Parkinson’s) may actually have been a combination of Parkinson’s Disease and her Arthritis – hence the fact it was picked up earlier. Problems that can occur with this symptom include – turning round, getting out of a chair, or fastening a button. It is a symptom that can affect lots of everyday tasks and can be quite painful (as my mum quite often indicates with language which I shall not repeat on here) 3) Slowness of movement (bradykinesia). This is another very common symptom, it means that walking can become more difficult, especially ‘getting going’ (again indicated by my mum with unrepeatable words) and starting again after stopping for a moment. These three symptoms can affect sufferers in many different ways for the simple reason that no two individuals are the same. It is this very same variation that applies to other symptoms often seen in sufferers. These can include a lack of facial expression (my mums often ‘blank’ look), a changed posture, tiredness (my mum often doses off to sleep
with no warning – and sometime in slightly embarrassing places), and difficulties with balance, speech, and writing. While my mums balance is still relatively ok, I have noticed that sometimes she has difficulties speaking, especially whilst reading out loud, and she also finds that her writing simply gets smaller and smaller the more she writes. Some people, although not many have a difficulty in swallowing, this is partly due to one of the paradoxes of Parkinson’s that can either lead to a shortage, or and excess, of saliva. My mum, I believe, has a shortage of saliva as she often has to either have a drink regularly (usually her faithful cup of tea) or suck a sweet – to encourage the production of more saliva. Another somewhat distressing symptom of the disease is depression, something that my mum had already previously suffered from. All of the above mentioned symptoms develop gradually and never in any particular order. Some of them take years to become a major problem and most of them can often be treated and improved with medicines. There are several drugs prescribed to treat Parkinson’s and these include: Levodopa (under the trade names of Sinemet and Madopar) – the latter being one of the ones my mum takes. Selegilline (Eldepryl and Zelapar) Dopamine Agonists – Bromocriptine (Parlodel), Cabergoline (Cabaser), and Lisuride (Revanil) to name just a few Anticholingergics – Benzhexol, Benztropine (Cogentin, Biperiden (Akineton), Oprhenadrine (Disipal) and Procyclidine (Kemadrin, Arpicolin) Amatadine (Symmetrel) COMT Inhibitors – Entacapone (Comtess) (see - http://www.parkinsonsdisease.com/lwp/lwp.htm for more information on some of the above drugs) There are also several other drugs, which are prescribed, and new ones are often becoming available. As well as taking medicines for Parkinson’s symptoms there are also Phy
sical Therapies available, which a GP can advise on. These are Physiotherapy, Speech and Language Therapy and Occupational Therapy. In addition to using these professional physical therapists it is also possible for sufferers to help themselves. It is very important to stay active and sufferers will find that the more they try to do, the more they will be able to do. What can sufferers do to help themselves? - Don’t get upset or discouraged if you find yourself doing routine tasks at a slower pace – keep active and work at your own pace - Try and keep as many of your recreational activities as possible – my mum can still be found digging either her own, or the vicar’s garden, at every moment when the sun is up. - Although many people continue driving for years after being diagnosed it is essential to inform the Drivers Vehicle Licensing Centre (DVLC) as soon as you are diagnosed , or you car insurance will no longer be valid - Make sure you talk you your GP, hospital doctor and other health workers – they will help you to live a long and happy life. - Try and keep yourself as healthy and active as is possible. Get plenty of fresh air, exercise, and a sensible diet. The healthier you are the easier you will find coping with Parkinson’s - Plan your entire activities well in advance to make sure that you have no pressure to hurry things. - Make sure you keep up your social contacts to stop yourself becoming isolated and lonely – you could find out if there is a local branch of the PDS (Parkinson’s Disease Society) in your area and join that. - Try to acknowledge and accept your feelings and make sure you talk to someone if you think it could help – don’t bottle it up inside, you’ll only feel worse. - If you have difficulty fastening your clothes front zips and Velcro strips make dressing quicker and easier. What about carers, family and friends?
It is not only the person with the condition that is affected but also the people who ‘live with Parkinson’s’. Although these people (including myself) may be tempted to plough all of their energy into looking after the sufferer, it is very important to look after yourself as well. If it is your partner that has the condition sit down with them and set realistic goals for yourself and your partner (don’t expect great things – but just take pride in what you DO achieve). Don’t be too over protective of them, try and encourage them to do as much as possible for themselves, even if it takes longer. Make sure that you leave yourself time for hobbies, visiting friends, or any other pastime that you enjoy. Most importantly though, make sure that you accept your feelings and talk about them with someone else. I know that writing this has helped me to take a better control of my feelings and thoughts about my mothers illness, and I must confess that despite her having being diagnosed for almost 10yrs now – I have learnt a lot whilst researching some of the points for this opinion. And just remember that Parkinson’s will only stop you doing things if you let it. My parents will be visiting Scotland in September and are going to be climbing Ben Hope – the mountain they climbed on their honeymoon. Although my mum accepts it will take her much longer she has enough belief in herself to complete the climb – even if it takes 3 times as long as it did the first time. *UPDATE* - They have been on holiday but neither of them managed to make it ALL the way up the mountain, however my mother did make it 2/3 of the way and is very pleased with that. For more information you can visit the following web sites: www.parkinsonsdisease.com – a very comprehensive site dedicated to all aspects of Parkinson’s Disease www.parkinsons.org.uk – the official w
eb site of the Parkinson’s Disease Society (PDS) http://glaxocentre.merseyside.org/yapp/index.html – information about YAPPERS – a group for young people with Parkinson’s Disease <br>Information can also be received from: Parkinson’s Disease Society of the United Kingdom, 215 Vauxhall Bridge Road, London, SW1V 1EJ Tel: 020 7931 8080 Fax: 020 7233 9908 Helpline: 0808 800 0303