Once independent and now...

[Edmond]

I live in Winnipeg, Canada and I was finally diagnosed in July 2024 after about 2 years of chasing a diagnosis for all my symptoms. I am an independent individual and have looked after others and travelled the world. I am 69 and lately getting hit hard wit ALS symptoms; extreme fatigue, very sore lower spine, loss of strength in my joints. These have me reorganizing my life..

I also live alone and now need some advice on how to reorganize my needs via others and support organizations. One thing that have not figured out is timing of health issues. To be honest I simply don't know what comes next Healthwise. Should I sell everything and what can I donate.

 

[Nikki J]

Some of this is going to be specific to your location and also to Canada so I expect our Canadian members will be helpful

Your current working diagnosis is PLS?

If you are going to move early is best Everyone is different for progression rates and progression in an individual is usually not linear

In general it is best if you address things early. I found the second something became a tiny bit hard I needed to implement a solution for when it was impossible and I am ultra slow progression. Faster progression needs to look ahead more. Big issues mobility, self care/ grooming and dressing, transit for when you can’t drive which will ultimately need to be paratransit, communication ,nutrition and breathing. Our resource section may be helpful for some of this Resources

Please feel free to ask specific questions also to use our search function as likely the issue has been raised before and you may get views from members no longer here

Sorry you had to join us. Please let us know what you need to know

 

[ShiftKicker]

Hi Edmond-

Are you being seen at an ALS clinic? ALS clinics are the usual jumping off point and can provide access to occupational therapists, social worker and physio resources. Not sure if you are close to one or not, but if it's not an option for you, the ALS Society of Manitoba website (alsmb dot ca) is a great resource as well. I recommend you register with them as they can provide further links and connections to practitioners, financial aid, a lending closet and can put you in touch with a variety of other helpful people, including local support groups.

It can be hard to know where to start, but an assessment by an occupational therapist can give you some idea of immediate needs with regards to activities of daily living, as well help you with predicting near future needs and long term stuff.

ALS clinics serving the province of MB:

Deer Lodge Centre - Rehabilitation Services ALS Team
2109 Portage Avenue,
Winnipeg, MB, R3J 0L3
204-831-2568

Health Sciences Centre
GE241-820 Sherbrook Street,
Winnipeg, MB, R3A 1R9
204-787-5111

 

[Edmond]

Nikki,

Thanks for the information and confirmation that I am on the right track with Deer Lodge. The other matter that I am dealing with is not knowing what my body does next. I am a Project manager in the tech sector and been a consultant for most of my career. The reason I state this is not to bore you but to show how powerless I feel with the absence of information and CONTROL (lol) like this one... you may have 2-3 years!

I'm not jumping off the cliff yet and will feel considerably better once I get to Deer Lodge.

Ed