Father (84) - just diagnosed. What to expect.

[vm133]

My father is pretty fit for his age (still plays golf a couple of times a week). He has had hand tremors for several years, but has developed more symptoms over the last year. He has had several falls, he has developed a stoop and bends to one side, some co-ordination difficulties, occasional word finding difficulties, difficulty processing information if people speak quickly, knows what he wants to say but words come out differently.

He saw a neurologist on Friday who gave him the diagnosis and a prescription for Madopar but no other information.

I would like to know what to expect, so I can help him and my mother make a plan.

[Hidden]

My neurologist answered me, expect each succeeding year to be worse.

May I suggest a search on my Posts for further information

[Hikoi]

Vm

You are well researched and probably realise your father has probably had pd for a number of years but now it seems to be accelerating. Personally I wouldnt delay on any plans that you or he has because things wont get better, there will just be good days and bad days as there are for us all. The research seems to point to quicker progression as we age. Best wishes to you all.

[vm133 in reply to Hikoi]

Thanks Hikoi - that's what I feared. I don't think he really knows the full implications of his diagnosis- I don't know whether that's good or bad.

[Hikoi in reply to vm133]

I hope I was not too blunt but I reread your post and thought; you want confirmation of what you already suspect. I have lived with pd for 9 years now and all I know is from reading (dr google is amazing, espec google scholar for research) and questioning.

About his meds, he may find they make him feel unwell for a while. Domperidone is the anti nausea treatment. They can also affect him in other ways and I have just taken less until my body gets used to them.

I hope he doesnt break a limb from falling, that and pneumonia from swallowing problems are things to look out for. Again best wishes.

[ddmagee1 in reply to vm133]

Probably a good thing. As my progression gets worse, and as an older person, it is a good thing. I find that it's better if I don't delve into reading about stage 4 etc.! I try to remain positive and do some exercise to lessen stiffness, and enjoy life as much as I can when I have good days. If I worry about the future too much, then it cuts into my enjoyment of trying to make each day count and live each day to the fullest.

[AmyLindy in reply to ddmagee1]

The Struggle is REAL. DITTO. Fine line between "research" and "horror" reading...my husband suggests I put it down and WALK AWAY. INFO Overload and Depression ensues. I find myself "sinking" a lot, instead of being "enlightened or encouraged" (although there is a very fair share of that here, thanks to all of you, my virtual friends :))!

[Lmji in reply to AmyLindy]

Hang in there mate. Never give up never let go never say die. WE WILL ALL BEAT THIS. MARK MY WORDS

[vm133]

Definitely not too blunt - I appreciate your honesty and perceptive of you to realise that I was looking for confirmation of my fears - my Google searches have been quite frightening.

[M_rosew]

Sorry you didn't get much info.

As you are in UK, best place to start is <nhs.uk> for NHS Choices which lists your entitlements.

Then go to <parkinsons.org.uk> for info on all PD matters. You can get telephone help and be put in touch with your local PD group and Parkinson's Nurse.

(It's worth joining Parkinson'sUK as they also raise funds for research)

[stevie3]

Has he been put in touch with a Parkinson's nurse? You don't get much time with the neurolgist but you should get a Parkinson's nurse who is experienced in this condition and will be able to help with the practical side of things. They act as a link between the neurologist and the pwp. Also, provided it's safe, please encourage your dad to keep exercising. It's really important to keep moving!

[ruff1]

Def contact your PArkinsons nurse, my husband gas been diagnosed for nearly 11 years - although a lot younger , now 60. Golf is great , encourage him to play as much as possible , John plays 4 times a week - 9 holes , gets tired. At our gym there are specific classes for PArkinsons, led by a physio , ask Oarkinsobs UK if there are any in your area . Diet- east as little processed as possible, John gas issues with Protein neat his tablet time do we adjust neals accordingly . Most of all keep positive, there are worse things to have . Feel free to message me if you want 😀

[vm133]

Thank you so much everyone- I'm so glad I have found this forum.

[JohnPepper]

If you read my story you will see an absolute mirror image of what you have described. He is playing golf, which, after reading my story he will probably say, "Well, I have been walking around a golf course twice a week and that should be enough walking". Well, it isn't. If he wants to try to get better, he should start doing fast walking. By that I mean as fast as he can. Follow the recommended instructions and see what a difference it makes to his Pd.

The medication is not designed to slow down or stop the progression of Pd, it is supposed to temporarily hide one or two of the symptoms, so don't think he is doing anything to take care of the Pd, he isn't.

[Hikoi in reply to JohnPepper]

You omit to explain you have an action tremor not a resting tremor. Quite different.

[JohnPepper]

There are many people with resting tremors who are doing the fast walking. A resting tremor does not preclude you from doing fast walking. When you walk, with your fists clenched the resting tremor goes away, hence the name 'Resting tremor'